Cancer Cachexia

dansdiamond

Food Sound Eng.
Gold Site Supporter
Saturday, August 8, 2009 4:00 PM, EDT
Arnetta & Warren Journal


In light of my report on Warren today, the part of this entry that I wrote earlier in the day (below) may seem out of place. However, I have no doubt that it will be relevant again, as it has been in the past week when Warren stayed in his room until mid afternoon (if he left it at all) before coming out to the sunroom to nap on and off in front of the TV until bedtime.

This morning I expected a visit from a friend – our daughter’s former mother-in-law, Leona, - at 10:30am. Ironically, for the first time in many days, Warren was awake by 10am today and wanted to leave his room to come to the sunroom. I had planned to entertain Leona (who hadn’t wanted to “bother” Warren) in the sunroom while Warren slept in his bedroom as he had every morning this week.

I wasn’t sure Warren would feel up to having anyone else around but he said it would be okay today so I got him ready to sit in his spot on the sunroom couch just as Leona was arriving.

Warren didn’t say much while Leona was here, but he did join us for a couple bites of sinfully delicious Baker’s Square brownies which were a gift from Leona. (Warren had his two bites with 1/2 crushed Viokase in a teaspoon of applesauce).

Leona and I had a lot to talk about but Warren didn’t seem to mind our chatter. Leona is one of the family and, although Tim is the biological father of Caryn’s children, Leona thinks of the girls as her own grandchildren because she loves Caryn so much. (Another long and tragic story for another time or my book someday). Leona and I talked about many things including what a rainy weekend Tim and Caryn and Jay and Kate chose to take our four granddaughters camping at Camp Kilarney in the Irish Hills (last night through Sunday). Warren seemed to be listening at times but he didn’t join in.

A while after Leona left, our friend Muriel from church dropped by with some of her wonderful home made chunky applesauce and some quarters for my collection. (I haven’t updated the list lately but I know I still need a few Utah.) Muriel is a witness as to my continuing good health – she mentioned a couple times how good it was to see me looking so well and rested. Last night was a good night – I got a full eight hours with not one wake up call!

Warren says he feels stronger today and he acts stronger, too. Right now he is engrossed in watching Tiger play in the Bridgeport Classic Golf Tournament but later I hope to turn some of his energy into conversation between him and me!


Earlier in the day (prior to 10am) – Saturday, 8-8-09:
A couple of my friends have commented that my last two entries sounded very sad. I thought I was doing a good job of camouflaging my sorrow but I guess it is still visible to those who read between the lines.

Realistically, who wouldn't be sad? Hospice and Pie Susan have both told me that Warren will go from sleeping 90% of the time to a "final sleep" when there will be no more talking to be done.

"Final sleep" has such an ominous ring to it. Right now there is so much left undone and unsaid between the two of us. I'm afraid if Warren truly feels there is hope for life, much of what we should discuss will remain undone and unsaid, for it seems that as long as he has hope, Warren doesn't want to talk about DNR orders, death and funerals. Maybe I should bring those things up more, but I don't know how to do it gracefully and without pushing the issue.

I just pray to God that He gives me the privilege of saying a final “I love you” before Warren is carried off by the angels. People with experience also tell me Warren will still hear me during that final sleep just as I heard the doctors so many years ago when I experienced death. Then, at least if I am beside him, I'll be able to tell him I love him one last time.

It is a blessing that Warren has been able to sleep so soundly. It is likely he will drift away that way. That would be a good thing. I tell him how much I love him before he goes to bed each night so if he passes in his sleep he has been assured of my love beforehand. I also say “I love you” periodically throughout the day when Warren is awake so he is reminded then, too.

Of course, as my good friend, Helga, says, “there is no good time for death but some times are better than others.” Occasionally, I get distracted by the outside world or by a project. God forbid that death should happen then.

Above all, I pray that Warren’s final hours will be very peaceful and that the pain never returns! With or without pain, however, Hospice may give him morphine at the end to help the labored breathing which I expect will increase like it has in many cases as reported to me by Caringbridge readers.

Speaking of the Caring Bridge connection, last night my friend Pat wrote: I was impressed with your entry today. Please know that there are some of us (at least, me) out there who are not interacting with you daily, but we are reading your journals (daily) to keep up with yours and Warren's progress.

I know that is the case. Even though I get too many notes and guest book entries to respond to each one individually, the more than ample number of messages I receive in all forms is small in comparison to the number of hits on the journal page. That large number – now about 22,300 – thrills me, too. Every single digit means that another person cares or cares again. It's astounding!

Pat continued: I am always impressed with your ability to express all your thoughts in the journal. It is clear to see that this is therapeutic for you, but the pain is also sooooo visible and it makes me wish that there was something that we (friends) could do to lessen your load. Please know that we are here sending up our prayers. Losing someone we love is probably the hardest thing we have to encounter. They say that we become stronger after every trial that we face. Sometimes we'd just not like to be stronger. I can agree with that - I'm strong enough already! . Please remember that if there is anything that we can do, just ask.

That is a comforting thought. I'm okay for now, but I'm counting on all our friends at Nardin to give Warren a fitting farewell service and luncheon when the time comes. I know there will undoubtedly be many of our friends who can't make it for one reason or another - that's only natural, but I know Warren would feel very honored to have a lot of people come to see him off.

Thoughts and prayers remain with you.
Thank you for that - I feel them around me, in large part thanks to the communication available through Caring Bridge.

I’m sure I don’t have to tell all of you how wonderful Caring Bridge is. It has been a great tool for me to keep you informed and a great safety valve for my emotions. When the time comes for Memorials to Warren (preferred by many in lieu of flowers), Caring Bridge will be one of four choices we suggest. The other three choices are 1) Hospice of Michigan, 2) donations to eliminating cancer of any kind but especially the silent killer – pancreatic cancer – and finally 4) Nardin Park United Methodist Church. All those entities are very important to us and would be fitting ways to remember my beloved husband.

There may, of course, be other ways to remember Warren as well. For example, ASI (American Sailing Institute) members may want to do something to benefit the organization in memory of Warren. He would really love that, I know. Similarly, the Farmington Community Chorus members may come up with something in Warren’s memory to benefit the chorus Warren and I have both loved and supported for the past 18+ years. The possibilities are endless and all of them would be much appreciated!
 

PieSusan

Tortes Are Us
Super Site Supporter
Arnettamae, I am a lawyer. There are some practical issues that you must learn. It is funny because my father always broached the hard subjects and I didn't always want to listen but he made me. I wanted to be sure that I knew what to do--I am not talking about funerals and services etc. I am talking about the day to day stuff that Warren use to be responsible for. Do you know where everything is in the house--I had no idea where the bathroom plumbing lead--a closet of all places in my parents' room--I didn't know where the septic tank was--there are bunches of stuff that he may know that you do not and will need to know as it becomes necessary to deal with house issues. Do you know where all financial accounts are? Do you know of any and all insurance? Do you know where the key to safety boxes are? My father had all kinds of advice for me that he wanted to impart towards the end. There were phone numbers and professionals to consult if need be. My dad tried to help me be prepared to do all the things he use to do prior to his death but there were a few things he forgot to answer. It is these things that have often made me wish he were here to answer me.

I know it is breathtakingly sad and incredibly painful and stressful. It is not easy to think of the end of life as a celebration. We live in this world to better ourselves to be ready for the next. I know it is cold comfort when you selfishly want to cling to your loved one but that is how our life works. Letting go is one of the hardest things to do but it is essential for a peaceful death.

Don't be afraid to discuss anything with your soulmate. Warren knows what is going on and is most likely trying to protect you and use a bit of denial to cope but he will want to talk about things to support you and help you because he loves you as much as you love him.

Peace be with you,
Susan
 

arnettamae

New member
Arnettamae, I am a lawyer. There are some practical issues that you must learn. It is funny because my father always broached the hard subjects and I didn't always want to listen but he made me. I wanted to be sure that I knew what to do--I am not talking about funerals and services etc. I am talking about the day to day stuff that Warren use to be responsible for. Do you know where everything is in the house--I had no idea where the bathroom plumbing lead--a closet of all places in my parents' room--I didn't know where the septic tank was--We don't have septic and I'm clear on all the others - I've had to deal with many household things before. My main problem is low strength in my arthritic hands and sufficient height to reach stuff! I'm 5'6" but Warren's extra half foot really helped out sometimes. The step stool is my constant friend now. there are bunches of stuff that he may know that you do not and will need to know as it becomes necessary to deal with house issues. I've pretty much dealt with the inside of this 4300 square foot house all these years. Warren took care of our landscaped acre which I know I can't do in addition to the house, so I'm hiring that done. Every time I decide I need to have the irrigation guy come and blow out the sprinkler system to water the gardens, we get a heavy rain - like last night - and it buys me another week. This has been a very strange summer - very wet and mild temps. I think we are swapping climates with the State of Washington. Do you know where all financial accounts are? We have a map with our investment advisor (and very good friend before he became our financial planner - not a Bernie Madolf!). We just have a relatively small amount of cash in local bank accounts which I have always handled to pay bills, etc. Do you know of any and all insurance? Warren has no life insurance; he decided to invest the premiums instead and it worked out okay. I will be fine financially. I handle the other insurances - health, car and house - and have had help from Warren's x law partner and good friend, Dale, with the switch to Medicare for Warren and continuation of Blue Cross for me. That is all set now. Do you know where the key to safety boxes are? I have them. My father had all kinds of advice for me that he wanted to impart towards the end. There were phone numbers and professionals to consult if need be. I have a good list of all emergency contacts that I have always used. Dale is my lawyer now and everything else is and has been covered. My dad tried to help me be prepared to do all the things he use to do prior to his death but there were a few things he forgot to answer. It is these things that have often made me wish he were here to answer me. In your case, Susan, it sounds like you worked and your mom and dad ran the house. My case is so different. Warren and I have lived and worked together out of our home since we moved the legal/tax business here in 1986. We have been together 24/7 for all those years (and more) here in this house. Warren handled our business and I was his "Gal Friday" who did pretty much everything else concerning the household.

I know it is breathtakingly sad and incredibly painful and stressful. It is not easy to think of the end of life as a celebration. It's easier for me after my death experience. Sometimes when the stress of life gets to me, I go back to that place in my memory where I store that vision and it brings me peace. We live in this world to better ourselves to be ready for the next. I know it is cold comfort when you selfishly want to cling to your loved one but that is how our life works. Letting go is one of the hardest things to do but it is essential for a peaceful death. I am ready to let Warren go because he is not living a quality life right now and I know what's on the other side. But I know Warren well enough to know that he truly believes he may beat this disease and he doesn't want to talk about the alternatives to me or to anyone else until he knows otherwise. He seems to be in total denial of the odds against him and he is also losing memories of some of the signs that show he is losing the battle.

Don't be afraid to discuss anything with your soulmate. Warren is my soulmate in many, many ways. However, we both agree that when it comes to talking, we are worlds apart. Whereas I am an open book, a lot of Warren's chapters are kept under lock and key. Warren knows what is going on and is most likely trying to protect you and use a bit of denial to cope but he will want to talk about things to support you and help you because he loves you as much as you love him. I keep hoping so, Susan.

I know I need to try to talk to Warren again. With Warren you have to pick the right time and the right place to talk about something he is reluctant to discuss. Only our kids really understand what I am going through emotionally with him in that regard. Picking the wrong time and the wrong words to talk to Warren about some things can send him into a tailspin. We have learned to choose our timing carefully and even then, it doesn't always work.

Warren is a VERY wonderful but complicated man. He is gentle, loving, and compassionate with a terrific sense of humor. He is also the most moral man with the highest standards for moral and decent behavior that I have ever known. But Warren also has a very private place to which he retreats when confronted by something that upsets or confounds him - a dark place where ONLY he can go. Sometimes, years after the fact, he may drag a memory out of the darkness and bring it to light, but there are cubicles of emotions and memories which no person has ever penetrated nor ever will. Only God can know and affect what may be happening there. So I beseech God to resolve whatever conflicts exist and I wait for a sign that Warren is ready to talk.
So please keep hoping with me for that peace, Susan. I really appreciate your input and your support. Thanks so much for being there!

Peace be with you,
Susan
Answered by insertion above.
 

dansdiamond

Food Sound Eng.
Gold Site Supporter
I will be 62 in Sept. I am in perfect health. I so much appreciate the last dialogue between PieSusan and Arnetta. Cancer, or some other dreaded disease shows up, and than you could be totally incapacitated .
There is so much I need to teach my DW-
 

dansdiamond

Food Sound Eng.
Gold Site Supporter
Sunday, August 9, 2009 10:42 AM, EDT
Arnetta & Warren Journal


Yesterday evening (Saturday 8-8-09) Warren and I never got a chance to talk much as I had hoped to. He sat mum in front of the TV watching golf until 8:30 then he watched Tiger baseball all the while sleeping on and off. My attempts to initiate conversation were ineffective.

Warren reported stomach pain prior to bed last night. He said the pain has been there for two days and hurts worse when he tries to sit up. It used to hurt him to lay down flat – maybe it still does but he never tries to lay flat so we may never know.

Warren couldn’t assign a number to his pain last night but told me that he would appreciate some pain reliever. He had no memory of having morphine on hand or how to take the under the tongue dosage so I had to teach him again. Since Warren couldn’t pin down how much pain he felt, I only gave him half of the allowable dose of 10mg. He said the half dose helped him sufficiently so I returned through the open archway from the sunroom to the kitchen area.

Shortly after ingesting the 5mg of morphine under the tongue, I heard Warren say something so I went back in to check on him. He had dozed off and started talking nonsense in his sleep for a brief moment. As he came to, he tried to repeat what he had said but when he realized he wasn’t making sense, he told me to just ignore him; then he dozed off again.

At 10pm Warren said he was tired and he wanted to go to bed because he “never got put to bed last night.” He was surprised when I told him that I had put him to bed as usual on Friday night. (Actually, I’m not altogether sure he believed me.) I told him that maybe Saturday felt like such a long day to him because he got up at 10am when he had been staying in bed until the afternoon for several days in a row. One day, I told him, he never did leave his bedroom! Warren replied as he often does, “I’m sorry”. I always tell him that there is no reason to be sorry. I remind him that he isn’t on a schedule except for the one dictated by his own body.

There is a strange dichotomy of expectations in our current relationship. On the one hand, Warren is often apologetic about being a burden to me and I try to convince him that I don’t mind taking care of him because I love him. Then, often in the same five minutes, he will call me in to do something for him that he has heretofore (and will again) do for himself. The only thing I can figure is that his strength waxes and wanes a great deal from moment to moment and day to day. Yesterday he felt stronger, today he says he feels very weak and will have to take it very easy today. So far he is doing just that!

I will report again later if anything different happens. Meanwhile, the rest of this journal entry is taken from this mornings exchange with Pie Susan on www.netcookingtalk.com. The exchange is all about our major stumbling block right now – talking about important matters before it is too late. I pray to God for help with that hurdle.
 

PieSusan

Tortes Are Us
Super Site Supporter
Arnettamae, what will be, will be. I would not worry too much about it. If you can have these conversations, great. If not you will get by. I have. I just have been trained to advise people to be prepared and talk about these matters not only because of law school but because I have been through the school of hard knocks. I try to help others who are struggling along this path. Losing a parent is very different from losing a best friend or husband. I have only experienced the former and not the latter.
 

Fisher's Mom

Mother Superior
Super Site Supporter
Dan is away for a couple of days so I will be posting Arnetta's journal entries until he returns. It's a special honor to do this today since Arnetta's journal today is about some email conversations between her and me from this morning.

This is my second journal entry today because an angel visited my Inbox this afternoon and brought me comfort that I want to share with all of you.........................


Message From Terry Carter
Date: 8/9/2009 1:13:16 PM
To: arnettamae@twmi.rr.com

Hi Arnetta,

It's Terry (Fisher's Mom from www.NetCookingTalk.com). I am down at the coast with my youngest son Fisher, but I have still been following your journal. I'm so sorry that, barring a miracle, it looks as though Warren's time is near. I have never been in your position - facing the loss of a spouse - but I have cared for several loved ones with terminal illnesses. I know how tired and scared you are. I also know how helpless you feel in the face of the progression of Warren's cancer. I believe that miracles do happen and I have witnessed so many in my life! I know that you do, too, so I know how bewildering it is when the realization hits that there may not be one this time.

I've been reading your words describing your relationship with Warren. I'm struck by your enduring love and by the joy you have shared together. Current philosophy encourages frank and open discussion about all things important and I think that is a good approach in general. However, some people are not made that way. Warren seems to have been a man of few words when it comes to dealing with the unthinkable - things he can't fix. My husband is very similar. He is a wonderful man and has been my rock for 37 years, but he is not someone who discusses things easily. He is a man of action and if there is no action that can be taken, he is at a loss. It sounds a lot like Warren. Anyway, you are feeling like you need to discuss what Warren wants done in the event that things take a bad turn, as it looks like they are. My heart breaks for you because it's an awful position to be in - making life and death decisions for someone else.

This was what I wanted to tell you: do for Warren what you would want for yourself and let yourself be at peace with that. It may be just too much for Warren to think about this, much less make any decisions. The truth is that no matter what you do, this awful cancer will have its way in the end, most likely. You are the person he will be gazing at when he takes the next journey and his trust is not misplaced. If he cannot guide you in these decisions, trust yourself as he trusts you. You are a wise and loving woman and you will make the right decisions about everything, including resuscitation and final arrangements.

Love to you, my friend,
Terry

From: Arnetta Whitehouse
To Terry Carter
Sent: Sunday, August 09, 2009 12:25 PM

Dear Terry, I so needed to hear your message right now!!!!! My tears are streaming because you understand. You have put my feelings into words at least as well if not better than I ever could - I'm just so close to the forest that seeing the trees is difficult right now. Would it be okay if I share your insights with others? If so, is there any part of your e-mail that you would want me to exclude.

Terry, you will never know how much your words mean to me at this very moment. I was feeling that maybe I had said and revealed too much in my journal, that maybe the relationship Warren and I share would be too difficult for anyone to understand. I've been hovering around my computer amid my tasks hoping for some sign that I am not alone. Then there you were – I watched with anticipation as your e-mail cleared the “junk filter” and entered my Inbox! I can't thank you enough for taking the time to write such a wonderful note. Again, as he has so often, God has used an angel to comfort me and you are her!

Love,
Arnetta Mae


From Terry Carter
Date: 8/9/2009 2:07:39 PM
To: Arnetta Whitehouse

Oh Arnetta, I am so glad that my timing wasn't bad! I've been reading each and every one of your journal entries and it has brought back so many feelings for me - joyful and sad. You are so wise and so open and your words have always struck home with me. Your relationship with Warren is a living, breathing thing that comes through in every word. It is not perfect, just as we are not perfect, but in another sense, it is perfect. And this is not the time to try changing it. Your writings about your marriage have been a gift, and I thank you for them.

You can share anything I have written to you, if you think it might help anyone. I keep you and Warren in my heart.

Love to you,
Terry


From: Arnetta Whitehouse
Date: 8/9/2009 3:20:09 PM
To Terry Carter

Thank you so much for your permission and for your kind words, Terry. Though we have never met and aren't likely to, your reply is another testament to our sisterhood. I feel a kinship with you that can only be explained by our emotional similarities as well as the similarities between our beloved husbands.

Terry, you have added joy to my life today by validating my feelings as well as my efforts to paint a true picture of what it is like to care for a dying spouse. I wish there had been such a reference when I entered these uncharted waters. We have books, such as "The Last Lecture" by Randy Pausch, written by the dying spouse but as far as I know, there are few, if any, books by caretakers of dying spouses that have been written about the day to day grind and the floods of emotions that must be dealt with during such a sorrowful time.

My association with Caring Bridge started out to be just a vehicle to keep everyone informed about Warren, but it has turned into so much more! It is a book of my journey with Warren as we travel this path together, yet apart. I have an idea how it will end but I have yet to know the details. I have faith that God will reveal everything, all in good time.

Love, 
Arnetta Mae
 

Fisher's Mom

Mother Superior
Super Site Supporter
Monday, August 10, 2009 11:31 AM, EDT

Last night the time came for Warren and me to talk and the dreadful silence was broken. Those moments in time, when they finally arrived, were as heart wrenching and, at the same time, as beautiful as I had imagined they would be.

Warren asked me to sit by his side in that way he has that lets me know there is something really important on his mind. I had been waiting for so long and now the time was finally here!

With sorrow written all over his loving face my beloved Warren opened our discussion with a point blank statement, “I have come to the realization that my time here is almost over.” Through tears and sorrow we talked, as Warren’s energy would allow, for the rest of the evening.

Warren told me to go on with my life and find someone to share it with. I told him that I would be happy to share the rest of my life with friends and family. Warren would be a very hard act for anyone to follow and I don’t even want to think about looking for other male companionship when he is still filling my heart. There is just no room for anyone else now – there may never be.

Warren was sorry that he hadn’t taken advantage of the opportunity to talk to Reverend Dale Miller about his funeral ceremony. He told me that at that point, he really wasn’t thinking along those lines and the reason behind Dr. Miller’s visit wasn’t clear to him then. He says he still held out hope that there was something out there that would allow this cup to pass from him and from our family. He knew that our family was open to experimenting with holistic cures, including Rife, and he also knew that I was doing everything I could do to beat the cancer down, if at all possible, by adding things to his diet.

This past week, however, Warren has come to the realization that there is no miraculous cure in store for him. He mentioned our prescheduled appointment for this afternoon with the Rife Practitioner/Doctor which he had had me confirm last week. However, even if the Rife were to give Warren hope for eventual survival, he was sure he wouldn’t have the energy and strength to go through the long daily sessions that would be required. A 100% guarantee of success might be enough to help him endure the agony, but without that he couldn’t do it. The sessions made him hurt and they seemed endless to him. He told me he was "sorry". I told Warren that there was no need to be sorry. I didn't feel that the Rife was a viable option at this point and didn't want him to suffer through it. I had just wanted to be supportive of him if he wanted to follow through to try to save himself. I also told him that I knew the Rife and the chemo were too much for anyone to handle together, and that he had made the right decision to try chemo first. By the time the chemo was done and had failed miserably, it was probably too late to stop such an aggressive cancer. In fact, I said, I still feel that with an aggressive cancer such as his - unlike any of the doctors had ever seen, I really think that nothing we chose to do would have stopped it. Warren agreed.

Last night, Warren still felt he wanted to go to go through with the follow-up scan before closing out the Rife option, but this morning he asked me to cancel that appointment due to the predicted heat and humidity. I think he knows, however, that the appointment will never be rescheduled and I am glad for that. The doctor is booked for this week.


I told Warren about the funeral arrangements that I have tentatively put in place and he was very happy with what I had done. There will be a night of viewing at Heeney Sundquist. Cremation will happen the next day. The day after that there will be an interment service where Warren’s ashes (except for the few I will forever wear in a locket) will be sprinkled in the courtyard memorial garden at Nardin Park. A luncheon put on by the church will follow there. Dr. Miller will do the service if he is back from vacation. If not, our former Pastor, Dr. Ritter has gladly agreed to do the service with our Associate Pastor, Susan Youmans. I hope Tony will be in town (gone from 8-9 to 8-17) for the funeral. If so, he will sing a gospel arrangement of Amazing Grace. Claude will sing Warren’s one personal request, “Beautiful Isle of Somewhere”, and Christine will sing the Twenty-third Psalm. The congregation will sing “Amazing Grace”. Warren said I have covered the music portion wonderfully. He is very happy with my choices of songs and soloists. I invite anyone who wants to say or sing a word about Warren – funny, sad, loving, whatever else is pertinent – to let me know. Warren would love that, too.

Throughout the evening Warren and I talked about many other things. He asked me how the kids are handling his illness and if the granddaughters are okay. Of course, I told him that all of us in the family are sad. We love him so much and we know we will miss him, but we also don’t want to see him in pain or discomfort any longer. I reminded him of what a beautiful and peaceful place heaven is (from what I could see in 1970) and that he will certainly be at peace there.

Warren asked about our friends and I assured him that they are all waiting in the wings to lend any love, comfort and support they can. The number of hits on the Caring Bridge site, cards, e-mails, letters, prayers, and thoughts being sent his way is staggering. I shared some of those messages with him again to refresh his memory as to how well people think of him. Warren said he would be happy to just be thought of as an “ordinary fellow”, so I asked him, “What’s wrong with being thought of as an extraordinary fellow”. He answered, “Nothing if you are lucky enough to achieve that”. “Consider yourself lucky then”, I said.

Warren told me how much he appreciates everything I have done for him and the fact that I have been there for him through all of this. He said I had done everything perfectly from the onset of his disease up to the talk that we were currently having, and that I should have no regrets about anything when he is gone.

I don’t have any regrets about what I have done for Warren since the onset of his illness in early February and his diagnoses in March. I know I have done all I could for him and to the best of my ability. I will always have regrets about mistakes I have made in the past, just as Warren has said he does. But we have hashed those out long ago and they will remain buried under the weight of all the wonderful memories that have since overshadowed them.

My biggest regret is that we didn’t know to make the very most of every moment we had together before Warren got sick. I wish we had spent every hour possible enjoying each other’s company.

I pray that no one of you reading this makes that same mistake. I know we hear it all the time – “Live every day as if it is your last”. At least, I know I’ve heard it a million times; but it really hits home now! If you can help it, don’t wait to do those things you have always wanted to do, especially with the ones you truly love!

Warren is still resting comfortably this morning, asleep in his downstairs room. I feel blessed having him there where I can keep a constant vigil as I sit here and write. I am extremely grateful that Warren and I have been able to talk about so many important things, and my heart is now more at ease with whatever happens at whatever time it happens. I feel as prepared now as I can be for that final “Goodbye”. I am still afraid of the pain in the final moment when Warren walks toward the light, and I know I shouldn’t and can’t call him back to me – like his love called me back so many years ago.
 

PieSusan

Tortes Are Us
Super Site Supporter
It is such a wonderful thing that you were able to have this conversation painful as I know it was but one is blessed if one can have these kinds of talks. I prayed that you would get around to be able to having this meaningful discussion. I tell my mother that I love her every day because I never know which one will be her last and want her to know that she is loved, safe and secure and well-taken care of.

My G-d bless you both!
Hugs, Susan
 

dansdiamond

Food Sound Eng.
Gold Site Supporter
Thanks FM for Posting the Journal while I was gone!

Tuesday, August 11, 2009 8:40 AM, EDT
Warren & Arnetta Journal


Diamond, our female cat, was faithfully ensconced at Warren’s side where she had been for hours when I went to check on him yesterday morning. I sat down next to her, and Warren and I continued to talk a little more. Warren petted Diamond’s head and said, “I will miss this one; she has barely left my side for days.”

Neither Warren nor I knew that Diamond was capable of such stalwart faithfulness. We always said she fits the phrase “Girls just want to have fun!”

Diamond is very friendly, though. Everyone who meets her, falls in love with her – even people who say they never liked cats before. Diamond loves to be cuddled, too, and lets the granddaughters drag her around like a baby-doll. Diamond is a treasure befitting her shelter given name.

Warren told me that he felt unusually weak and tired and for some reason he craved a small cup of coffee. He hasn’t had any coffee for weeks but he thought it might perk him up. I brought a small glass mug half full of heated coffee but he was too weak at that point to hold the cup up to his mouth. I didn’t want to try to feed him hot liquid to his mouth so I went back to the kitchen to get a coffee straw. I held the cup up to him and he only took two sips through the straw before he said, “That’s enough. Sorry, bad idea.” (Not bad coffee – it was Starbucks!)

Warren’s weakness reminded me of the night before when, after we had talked, he asked me to share a dish of ice cream with him while the Viokase was still active in his system. He couldn’t muster the energy to get the ice cream on the spoon and to his mouth, so while I ate from my dish, I also got ice cream on a spoon for him and fed it to him. He only took two small spoonfuls before he tired too much to eat any more.

We continued to talk yesterday morning about how good it had been to talk the night before and how much better we both felt for having done it. I told him, since I had remembered the ice cream, that I really enjoyed him asking me to join him with a dish of ice cream, even if he couldn’t finish his. He said, “Maybe we will do that again tonight”. But, as you will soon read, our evening turned out differently.

We continued to talk about what is to come. I told Warren that I was still afraid of the end. I wouldn’t be afraid, I said, for myself to die, but I am afraid for him because we really never talked about how he feels about the moment of death. I asked, “Are you scared?” Warren thought about that question for a moment and replied, “No, I can’t say as I am afraid. I am trusting in God.” I told him then, that I feel a lot better for him when the end does come and, consequently, better for myself, too. After we each said, "I love you" he drifted off to sleep.

Nurse Mary showed up around 1:00 to see “one of my favorite patients”. She was scheduled, Hospice told me when I called, to come Tuesday instead of her usual Monday. However, she found out she has a meeting to attend Tuesday (today) so she squeezed him in on Monday anyway.

Mary took Warren’s vital signs – still good at 138/68. She noted, however, that Warren’s breathing is more labored and authorized me to turn the oxygen up to the previous maximum of four given to me by Hospice. She also told me I could turn it up another notch to the ultimate maximum of five if I felt it was necessary. Warren’s heart was also racing – probably due to his labored breathing.

After Mary left, Warren wanted to get up and come in the sunroom for the afternoon. As usual, he slept on and off in front of the TV and I went about my business – housework, clerical work, messages, laundry, etc., etc. – only stopping to feed Warren at the proper times and help him with the commode as necessary.

As is usually the case, Warren perked up for the evening at around 6pm. He noted that our TV had recorded a new “Monk” – one of our favorite shows and I was hungry for popcorn. I had only had an apple and a large slice of low fat cheddar cheese so far for dinner so I decided to finish with popcorn. You just can’t beat Monk and popcorn for fun! It was close enough to Warren’s evening feeding that he could have a bowl, too. He could only eat a few popped kernels but at least he enjoyed the taste he had.

It has been a long time since Warren and I watched a favorite show together and had popcorn. For just a brief and wonderful moment, I was in a time warp. I forgot how sick Warren is and it seemed as if everything had returned to normal.

The end of the show brought me back to reality. It was only around 9pm and Warren announced that he needed to go to bed. Sometime during the show he had become utterly weak and exhausted. It was all we could do to get his teeth brushed, use the commode and get him transported to his room.

Once Warren was in bed, I sat down with him and initiated one more conversation. I told him, “We’ve talked about you dying, but people have told me that I need to clearly tell you that it is okay to go. As much as it hurts to lose you, and as much as I will miss you, I will be okay.”

Warren looked at me with total understanding and said, “I really don’t see that I have much choice in the matter. I will be going. We will someday be together on the other side and I will wait for you to join me there.”

I told him that I will stay here as long as I am healthy, especially for the kids and the grandkids. It would be devastating for them to lose both parents and grandparents close together. “But,” I said, “I will look forward to being with you again in heaven. In the meantime, I will wear some of your ashes in a locket around my neck and over my heart so that I always have a piece of you with me here on Earth.”

Warren said, “That sounds wonderful. I can go in peace now.”

“Not tonight, though”, I reminded him, “Caryn and the girls are coming to see you again tomorrow and Kate and Jay will be here on Wednesday. As long as you aren’t in pain and can enjoy another visit, you should stick around.”

“Okay”, he said, “I love you so much.” I kissed him on the forehead and told him I loved him, then he drifted off to sleep.

It’s 8:30 and I just checked Warren. He is still sleeping but it’ll soon be time to wake him up for the morning feeding. Caryn and the girls will get here around 11am so I need to close this entry. I probably won’t write again until Wednesday morning unless there is something urgent to report.

Thanks for being there for us – all of you and Caring Bridge, too. The therapeutic effect of my journaling and all your support is an incredible comfort at this incredibly sad and emotional time. I thank God for it!
 

PieSusan

Tortes Are Us
Super Site Supporter
What a fantastic gift you were able to give Warren by having these conversations. He knows he does not need to worry about you and your love will live on. This is one of the greatest blessings that one can achieve at this time. I am so sorry that you find yourselves here but you are not wasting a moment of the precious time you still have. Bless you both!
Much love, Susan
 

arnettamae

New member
What a fantastic gift you were able to give Warren by having these conversations. He knows he does not need to worry about you and your love will live on. This is one of the greatest blessings that one can achieve at this time. I am so sorry that you find yourselves here but you are not wasting a moment of the precious time you still have. Bless you both!
Much love, Susan

Thanks Susan, I am very relieved that Warren and I were able to talk in such depth. I'm especially happy to know that he isn't afraid to die.

You are right - every moment is very precious. We are enjoying to the fullest every moment during which Warren is alert and able to communicate. Sometimes when he is asleep I find myself just gazing at Warren and feel thankful for the fact that he is able to sleep so peacefully. Now that he and I have probably said everything we need to say to each other, Warren can truly rest in peace and I will be able to let him go when God calls him home.

Thanks for your continuing support, love and the wonderful HUGS!
Arnetta Mae
 

PieSusan

Tortes Are Us
Super Site Supporter
Arnetta Mae, I know how hard it is and you have been tremendously brave. It is not easy to walk this road, at least you do not have to do it alone.
Hugs, Susan
 

dansdiamond

Food Sound Eng.
Gold Site Supporter
Wednesday, August 12, 2009 8:25 AM, EDT
Warren & Arnetta Journal


Caryn and the girls arrived yesterday morning just in time for lunch. Warren was still sleeping.

While Caryn, the granddaughters and I had lunch, the Hospice Aid arrived and gave Warren a sponge bath. On Monday, Nurse Mary, Warren and I had determined that Warren was too weak to go up to Dad’s apartment for a weekly shower. I was sure that time had come even before Mary suggested it, and Warren readily agreed.


Caryn felt that she needed to leave for home around 3pm, if possible, to make sure she could get dinner ready for her family, including Tim’s father. We began to worry that Warren may not wake up enough for her to be able to speak to him.

While Warren still slept, Caryn and I had a meltdown together in each other’s arms. Caryn told me how very grateful she was for every bike ride, canoe trip and camping adventure we had all been able to have together before Warren got sick. We will always treasure those family times.

Around 2pm Warren finally woke up enough that Caryn was able to go in to talk to him for what she and I were pretty sure might be the last time. Thankfully, she was able to tell him what a great Dad he had been and what a wonderful Grandpa he was to the girls. Then the girls all had a chance to hug Grandpa, too.

Warren tired quickly and Caryn and the girls prepared to leave around 3pm just as my good friend Celeste arrived per my request. Celeste came to run a payment over to Joe Stammel to cover his very reasonable fee for checking over and selling our 2002 Ford Windstar. She also took a letter that I needed to send Certified Mail, Return receipt requested to the post office for me. While Celeste was gone, I investigated what was in the bag she had handed to me when she came in the door. She said it was “Vegetarian Pizza” for me but it was really two slices of still warm "Heaven" fresh from Whole Foods. I ate the first piece while it was warm and put the second away to reheat for dinner.

When Celeste returned, she and I sat at the kitchen table to talk and look at the letter that Bob had dropped off for me to read to his brother, Warren, when he woke up enough to hear it. I started to read the letter, but couldn’t finish so Celeste took over and read it to me. She had a hard time, too, and was crying at the end. We wondered how on Earth we were going to make sure that Warren got to hear what his big brother wanted to say. Just as we were discussing how to handle the situation, I got a call from our associate pastor, Susan Youmans (who is marrying Jay and Kate). Susan wanted to come over and visit us before she leaves on vacation. She said she would be happy to read the letter to Warren.

Susan sat at the table to give the letter a "pre-read". She wiped away a tear, too, while declaring what a beautiful letter it is and what a privilege it was for her to be asked to read it to Warren.

I'm glad Warren was awake enough to hear and comprehend Bob’s letter as Susan did a fine job of reading it to him (she is a great preacher, too!) That letter meant an awful lot to Warren and to me, too - it would be impossible to tell you just how much! We both know that Bob is a wonderful guy, but neither of us realized how incredibly deep his emotions run. I feel as if we both got to know him a lot better through his written word. It was a wonderful gift that Bob gave to both of us!

Jay and Kate will be coming today, along with a couple of our long time friends – Hank and Helga Kucharski. I’ve talked about them before – our families grew up together and we remain the best of friends. They are part of our family, too. I’m so glad that so many people have had the chance to say goodbye to Warren.

This morning has been hard already and I write through a mist of tears. My journal wouldn’t be complete without trying to recount the events of the last couple days regarding nights and the commode. I have seen a rare glimpse of what my good friend and nurse, Gwen, said recently in an e-mail to me after Warren fell during the night.....

“One word I would like to caution you on is assuming that Warren is or will be able to function and mentally process his needs, fears, etc. during the night. Nighttime does strange things to patients and as lucid as they are during the day and or evening, and regardless of promises made that they will call, ring a bell, etc...oftentimes it is just not possible for them to do so. What was promised (if they even remember) although made in true faith and dedication.... is often impossible and that is when serious accidents happen. I am so glad that Warren did not fracture anything given his weakened state. Just be careful...neither of you need anymore "challenges" in life.”


Yesterday, before Caryn arrived, I went in to check on Warren because I heard shuffling. There he was on the edge of his bed with his eyes closed and his pull-ups down relieving himself on what he obviously thought was his commode. It was too late to stop him – the deed was done. But out of unfortunate instinct, I said, “What are you doing?”

In a bewildered tone, Warren answered, “I don’t know”, then, “I need to lay down, I’m so tired.” The bedding and the floor were a terrible mess. Unfortunately, I had been preparing Warren for his Monday appointment with some extra water in his tube to hydrate him for the scan and that extra water was still coming through.


I investigated enough to see that just the down comforter, the top sheet, the underwear and the floor had gotten soaked so I pulled the wet things out from under Warren and laid him down. Then I ran upstairs and found a clean sheet and another blanket to cover him. I grabbed a roll of paper towels, put three at a time over the puddle on the carpet and stepped on them to soak up as much as I could. I continued that until the floor looked and felt almost dry – over half of the full roll later. Diamond did her part by pawing the area around the spot to protect her master from detection by “predators" while I went to the laundry room to get more stuff to use. I saturated the area with OdoBan and poured two cups of fresh water on the spot. I let that sit for a minute then soaked it all up by covering it with two bath towels in succession and stepping on them until the towels were soaked and the area felt dry. (I smelled it later and the only scent I can smell is the pleasant OdoBan.)

Warren never opened his eyes and was seemingly oblivious this whole time to anything that I was doing. It appeared that he had absolutely no knowledge that anything was amiss. I was glad for that. Those of you who know Warren personally are probably aware of what a clean, orderly and proper gentleman he has always been. I figured he would be mortified at what he had just done.

The biggest reason that you are all hearing this story is the surprise I felt at what ensued when I wheeled Warren into his room last night. He told me that he gets "very confused during the night". He wakes up “dripping” and doesn’t know where he is and can’t see where to go. He feels like he is awake but he knows he can’t be because he doesn’t remember having last been in the place he sees. He remembered that happening to him the night before and he felt that he hadn’t found the right place to go.

I said to Warren, “Is that when I found you at the end of the bed instead of on the commode which is on the other side of the bed?” He answered, “Yes, and I didn’t know what to do. I can see it now, but I didn’t see it last night and I probably won’t see it again tonight. If you could just be here with a pair of these (and he pointed to his pull ups) I could go in these.” I told him that he had those on last night and he pulled them down to go but I will put them on him each night and if he can remember they are there, he won’t have to worry. Or, I told him, he could ring the bell and I would come to help him. He said, “That’s the trouble, I won’t remember I have these on, I won’t be able to see them, and I’ll probably forget to ring the bell. I have lived a couple days longer than I should have.”

My heart broke! “Honey, I said, you haven’t lived longer than you should have. God has it timed just right. We have had some wonderful time to talk. Whatever, mess I need to clean up, while you prepare to go, I won’t mind.”

This morning at 2:15, Warren rang the bell and I went hurriedly down the stairs. He told me he had to go and he couldn’t see where he was. As I helped him onto the commode he told me, with eyes closed, that all he could see when he woke up was a business project he had seen – a garage warehouse on Orchard Lake Road. He thought, “there’s no bathroom here” and he panicked. Then he said, “Suddenly, you appeared and showed me where to go.”

Warren doesn’t remember that he rang the bell. Maybe he didn’t! Maybe God helped him to bump it, or maybe there was an angel in the room!

At 6:30 this morning, the bell rang again. I went into Warren’s room to find him shivering under his blanket saying he was cold. I closed the windows all the way and got the down comforter out of the dryer to put over him and he felt warmer.

Before I left the room, Warren requested a full dose of the morphine painkiller. He hasn’t had a bowel movement for almost a week now in spite of all my efforts to initiate one with Senna, prune juice, ZMA and Miralax and I think he is getting congested in the area of the pancreas again.

Warren said apologetically and in way of explanation, “I just want to be comfortable in my last couple days”.


“Do you think we are down to the last couple days?” I asked.


“It feels like it,” he said.

Through my welling tears, I said, “I want you to know that it has been a privilege for me to take care of you; it hasn’t been a burden.”

“Really?” It was part question and part disbelief.

“Yes, really Honey, - it’s been a heartbreaking adventure but it hasn’t been a burden because I love you so much. I just want you to be comfortable – that is my goal now.”

As we have known for a while now, the end is near. Please continue to pray for Warren’s peace and comfort. I will let you all know personally through Caring Bridge when Warren has gone to be with God. It is my privilege to owe all of you that courtesy in return for all that you have given us. God be with you
 

PieSusan

Tortes Are Us
Super Site Supporter
Arnettamae, that is exactly how I felt about caring for my father, despite the hardships and the struggles, I was happy to be there for him and to help him as he did me as I was growing up. So, when his last wish was for me to continue to take of my mother, I knew that I could never deny his last request. It has not been easy and I could have taken better care of me but I am happy with my choices. There is time that I have spent that is precious to me and I have learned a lot and have wonderful memories and have been given many gifts.
Bless you and much love to you both,
Susan
 

dansdiamond

Food Sound Eng.
Gold Site Supporter
Thursday, August 13, 2009 11:11 AM, EDT
Arnetta & Warren Journal



This morning has been a good one. Warren seems a bit weaker than he was yesterday but he is more comfortable. My efforts at inducing a bowel movement paid off this morning. He had a fairly large and normal looking elimination and he says he again has no pain. I thank God for that!

Yesterday was a tough day from the very beginning. Awake by 4am, I just couldn’t sleep any longer. I took a badly needed shower and got dressed. I went to the basement and resumed my search for our wedding album and all the pictures I wanted to have at the memorial service for Warren. I finally found them in the area where I had last seen them with my scrapbooking stuff, but in a different container than I had remembered them being in. It was a huge relief to find them!


After I got Warren fed I attempted to take a nap but found it impossible. The oxygen machine kept beeping shrilly on and off. I think we were having “brownouts” because the lights would flicker, too. I did get about 30 additional minutes worth of good sleep, though. That short deep sleep helped me to get on with my day with at least a minimum of energy and I thanked God for that!

Justin and Kate arrived for a visit in the late afternoon after Jay got back from a Phisch Concert in Chicago. They brought plants for my frog pond. Now it looks complete – a home for the many happy snails and frogs who already inhabit it. I expect there will also be some visits from the usual mallard duck couple, Donald and Daisy, that occasionally come to swim there, too.

Our long time friends, Helga and Hank, arrived around 6:30 and the timing was perfect - just after our meltdown was over. Their arrival gave us something to redirect our energies to - especially, Justin. He is having a very hard time with losing his dad so soon. Regarding his growing friendship with his father, Justin said, "we were just getting warmed up." Then he started to cry. That's when I really lost it. All three of us cried and held on to each other for a few minutes.

I showed Jay and Kate the Cremation jewelry I had found to put a portion of Warren’s ashes in so I can keep him with me every day. The design was just recently released and is the only one of it’s kind that I have seen – a sailboat circled by a ship’s wheel.

The sailboat is very significant for our family. The very close bond forming between Justin and Warren really began with a mutual love for sailing and, as the “galley maid” on our adventures, I was privileged to be a part of the growing relationship they shared. Also, I chose the sailboat as a symbol of our marriage in the tattoo that Justin designed and did for me on my left Deltoid in February just as Warren began to get so sick. (See the photo of Justin’s sketch. The tattoo itself remains to be colored in but it's beautiful in black and shades of gray, too).


Hank and Helga loved seeing Jay again and meeting Kate. They think “she's adorable”, too, and they agree that “It really does seem to be a good match.”

We all love Kate very much. The granddaughters have been calling her "Aunt Kate" since they first met her. It was love at first meeting for the girls and Kate loved them immediately, too. Justin and Kate both love to do things with them. Justin said last night, "Those girls are incredible and amazing!" Because of Kate, he is finally getting to really know them. Yes, Kate has definitely made a difference in all our lives. She is very wise for her years and I'm very glad that she is there to comfort Justin now.


I had a very restful night last night! I was very tired and ready to sleep, but I had decided by yesterday afternoon that I wasn't going to take any more chances with not hearing Warren get up. The monitor helped a lot but I could be missing too much - especially that one possible time when not being there would mean disaster - like a broken arm or leg to add to Warren's pain.

I had been trying to figure out some way to sleep closer to Warren all day. A phone call from Brooke, an ill friend, about the comforting knowledge of having her husband there with her at night, cinched my determination to find a way to be closer at hand during the night.

Warren's room is small and it is surrounded by ceramic tile floor in the foyer - tile that would be cold, slippery and not very comfortable as a "bed frame" for cushions. However, last night the kids and I checked out the situation and found that there is just barely room at the foot of Warren's bed for me to wedge three cushions from the pit couch between the bed and the wall. The cushions make an extremely comfortable bed and I was able to get good sleep there. Twice during the night, I got up to help Warren with the commode and also once to help him when he got cold. It was good to be there with Warren and I could immediately go back to my very comfortable bed and right back to sleep. In the morning I lean the three cushion against the east wall where they will be handy at night and can still walk around Warren's bed as needed.

E-mails last night and this morning (and my responses to them) helped me to write today’s journal entry. One message was from Helga and Hank regarding their visit last night and another couple messages were from Carol and Brooke about sleeping closer to Warren.

The final contributing message was from Dan and Vickie – good friends and members of our couples social group at Nardin Park. They wrote a wonderful summarization list of the blessings that God has granted Warren and me in the past few days. As I read over their points I realized that I have been aware of each one individually, but to see them so clearly listed is a gift that I cherish.

Dan and Vickie wrote:

I've been a daily reader of your travels and just wanted to write a note of someting I think you may already realize. That is the blessing of Time that you and Warren have been given. While there's been far enough pain and suffering all around you both, God has granted you the Time to:

- deepen and expand your relationships with each other

- deepen and expand your relationships with family and friends, and them with you.

- deepen and expand your relationship with God.

- Settle estate issues with a lucid Warren

- Close your relationship with a lucid Warren, and he with you.

These are all both precious...and rare.


Amen! As always, our family thanks all of you for your constant prayers, love and support. You have all given us so much to think about and to be thankful for!
 

dansdiamond

Food Sound Eng.
Gold Site Supporter
Saturday, August 15, 2009 9:26 AM, EDT
Arnetta & Warren Journal


Yesterday, Friday, August 14, was relatively uneventful in our lives except for the blessing of having Warren with us for yet one more day. Obviously he isn’t going to give up this life as quickly as he thought. It probably makes a huge difference to him to not be in pain. He had two additional bowel movements yesterday and his pain is totally gone now.

Warren spent yesterday afternoon sleeping in the sunroom with the PGA Tournament on all day.

I am beginning to see that Warren’s confusion is extending more into the daytime hours. A
t first Warren couldn’t understand why he couldn’t get the tournament on the TV. He assured me it was on channel 240, 450 or something like that. Like Warren, I couldn’t get the remote to even register a three-digit channel number, and I don’t ever remember hearing of a three-digit channel number. However, I’m so TV illiterate that I thought I might be doing something wrong. I asked Warren if he was sure about the channel and he said (a bit impatiently), “Yes, take my word for it”. I didn’t argue, I just took the remote off the couch again and set it for channel 35 (TNT) where the tournament had been the day before and, Walla, there it was again!

During the night Warren’s confusion was evident. He woke up to go at about 4am – that was a long time for him so it was urgent. He seemed surprised to see me there when I got up to help him. “Where do I go?” he asked, so I directed him to the commode and helped him get on. I saw his earplug had fallen to the floor so I picked it up and put it on his bedside table temporarily.

“Did you see my candlestick?” Warren asked. I repeated, “Candlestick?” “Yes,” he said, “the stick holder”.

I was at a loss and then I remembered the dropped earplug. I told him, “I picked up your earplug and put it on the bedside table. Do you want it now?” “Yes, I do”, he replied.


Warren looked down toward his feet and saw something on the floor – “There it is down there!” he said. To my question, “There’s what, Honey?” Warren’s answer came back – “The stick holder”. What he saw was actually the second earplug that had also fallen out. At least both earplugs were “stick holders” so I’m glad that I was able to guess correctly at the original word association. I still have no clue as to how the association could have originated. I pray that I can continue to guess correctly so that Warren’s increasing confusion doesn’t cause him stress (and me, too!)

This morning I almost missed an opportunity to help, Warren. I woke up late for me – around 7am – and started my daily routine. I was in the middle of feeding the cats when I heard Warren’s frantic call over the monitor. I went into his room to find him on the side of the bed opposite from his commode. “Is this our house?” Warren asked. “Yes, Honey, we are home.” I answered.

“Where is the bathroom?” Warren inquired further. I told him that the commode is on the other side of the bed and I helped him swing his body around to get there. He never opened his eyes during the process.


Warren is still sleeping but it is almost 9am so I must get his morning feeding ready.

Caryn and the girls are coming today so I will need to get ready for their arrival before I can proof and post this entry.

Have a great day everyone. As always, thank you for checking in and for your prayers during this sad and stressful time. I never know what the present day or the next day will bring, but I do know that God will see us through!
 

buzzard767

golfaknifeaholic
Gold Site Supporter
Such wonderful and brave people are Warren and Arnetta. I am deeply touched. Bless you both.
 

PieSusan

Tortes Are Us
Super Site Supporter
Arnetta, it is not easy being a caregiver no matter how much you love someone but it is a testament to your love that you are willing to. I cannot tell you how many people I know just walk away or let someone else do it. I could not fathom walking away from my parents just like you could not fathom not being there for Warren. G-d bless you and a great big hug! I am glad you have written your journal because I do not believe that all folks know what it means to be a caregiver and how consumed one's life becomes. It is a labor of love and although it is difficult there are many gifts along the way. Hugs to you, Susan
 

dansdiamond

Food Sound Eng.
Gold Site Supporter
Sunday, August 16, 2009 11:34 AM, EDT
Warren & Arnetta Journal


Our new Saturday aid, SandraDee (yes, named after the singer of the 1960’s), came at about 9:30am. Warren was barely able to wake up but Sandra did fine with him. We both liked her very much.

It took Caryn two hours to get here from Lansing. She got stuck in a huge three-lane traffic jam between Howell and Brighton. During that time, Caryn and I were in communication over our cell phones so I was able to give her a traffic update from the Internet. The traffic would clear around Brighton, but she should avoid the connector because there was construction happening there. By the time Caryn and the four girls got here, it was a good thing we have four functional toilets in the house! There seemed to be a rush in all directions.

Everyone went in to say “Hello” to Grandpa. Warren was sleepy so we told him we’d let him rest and we went in to fix our lunches – pizza pockets for the girls again (they love the treat) and tuna on pita for Caryn and me. Caryn had stopped to get me my Pink Lady Apples, some oranges, and my beloved kohlrabi, too. She also brought grapes and spearmint gumdrops. It was quite a feast!

Evidently, just as I got my lunch ready to eat, Warren was trying to call me (not using the bell again) but I didn’t hear him on the monitor over the happy chatter of the grandkids and Caryn and me. Finally, I heard Warren yell, “Is there anybody there?” so I left my lunch and went running into his room apologizing profusely. I asked Warren what he needed, and he said so pitifully, “I don’t know, (pause)…. I just wondered if anybody wants me.” I got all teary and said, “I’m so sorry, Honey; of course we do. I just thought you were sleeping.” Upon seeing how sorry I looked, Warren said, “I’m just teasing, but I do want to be included.” I happily agreed, all the while wondering whether he was really teasing or he actually had felt left out and changed his story when he saw that his question had hurt me. I choose to believe that he was teasing.

Caryn helped me get Warren to the sunroom. Once settled in, Warren tried to get the PGA Tournament on the TV but couldn’t figure out how to use the remote again. He was determined to do it himself but after 15 minutes, he was still watching cooking shows and noisy talk shows. Caryn gently eased the remote from him and almost immediately found the golf tournament. Today is the last day of the tournament and Tiger is in the lead – Warren will definitely want to be there! I hope I can help Warren find the golf using the written lesson sent to me by our friend, Frank.

After she finished her lunch, Caryn announced that she had brought a beading project to do while we visited. That sounded like a lot of fun – it’s been a long time since we were able to bead together. I got out my stuff, too, and Caryn and I sat down to work at the table right behind Warren’s place on the sunroom couch where we could all be together. We beaded all afternoon and it was wonderful fun! Caryn helped me to finish off a full set – necklace, bracelet and earrings – that I had started last summer. She also made us matching ankle bracelets using Swarovski Crystal beads. They are gorgeous – so sparkly! I may never take mine off! The girls busied themselves with all their favorite things – playing in their room, playing in the family room with my stuffed dog collection, playing outside and running through the sprinkler. It was a fun afternoon for all of us.

Caryn and I both lost track of the time and before we knew it, our tummies told us it was dinnertime. Caryn's husband, Tim, had tickets for the Nascar race and would be busy all day and evening so, happily, she was in no rush to get home. I got out a container of frozen chunky garden style spaghetti sauce and a wheat Baggett then cooked up some fresh noodles to go with them. Dessert was ice cream with a choice of toppings and sprinkles accompanied by a “health food cookie” – Warren's favorite oatmeal, walnut, and raisin – from Sam’s Bakery. Sadly, Warren wasn't up to joining us even for dessert this time.

Caryn and the girls needed to leave right after dinner to get home. On her way out the door, Caryn expressed a thought. She wondered if I had any plans for Warren’s old camera. I don’t – I love the little digital one that I am finally learning to use. With welling tears turning to overflowing, Caryn explained to me that Warren’s old camera is to her like the sailing is to Jay. Photography is the way that she and Warren first connected on a more adult level and it had served to bring them closer together. She hoped she wasn’t asking too much or appearing selfish. Such a wonderful daughter as Caryn is and has been, deserves so much more and could never ask too much! The camera (and much more) shall be hers.


Warren and I settled into our evening. He seemed awake and wanting to talk so I sat down beside him.

“What floor are we on?” Warren asked. I told him, “We are on the main floor in the sunroom. You don’t climb stairs anymore to the upper floor so we made your office into a bedroom for you, and we don’t count the messy basement as part of the house, so you are always on the main floor.” He said he knows those things. Still, he looked around like he didn’t recognize his surroundings.

“Really, the sunroom? But we are in the Fake room, right now, right? I haven’t been in this room for months.”

By this time I didn’t quite know what to say. I assured Warren that he had been in this room - the sunroom - yesterday and all day this day. After a contemplative pause, Warren agreed, “You are right, you are absolutely right.”

Here I am talking with Warren in his relatively normal voice, using normal words that have a ring of sense. My curiosity got the best of me and I asked, “What does the fake room that you have referred to a couple times, look like? What is in it?”

Warren’s response surprised me. “I know what I’m talking about, Arnetta. Don’t write me off yet.” When Warren calls me Arnetta instead of Honey or no address at all, I've learned he is stressed so I replied softly, “I’m not writing you off, Honey, I’d just like to know what the room looks like that is confusing you so maybe I can help you identify it better.” Warren seemed satisfied with my answer but offered no further explanation.

At the time, I thought, Warren was seeing a room in his imagination. But later a different idea occured to me. Maybe since it had gotten dark outside, Warren was thinking of the “Game Room” where there is also a couch and an older big screen television. He hasn’t been in that room for a while so that would make sense.


Later today, after Warren is awake and up I will try to get him to the Game Room. It’s quite an operation to get Warren there because it’s a step down from the rest of the house on slab. (Unlike the rest of the house, there is no basement underneath the game room.) Actually, that could explain Warren’s confusion with “levels”. Today, it would be good to bring the spare wheelchair in from the garage and use it to transfer Warren from the kitchen level to the family room and wheel him into the game room beyond. It just might serve to assure Warren of his surroundings and that would be worth any effort. Unfortunately, the game room is a mess right now because a lot of the stuff from Warren’s office is in boxes in there waiting to be dealt with. I have also borrowed three cushions from the pit couch to use as my bed in Warren's room and the granddaughters have scattered my stuffed dogs and cats about in there. I will try to straighten it up a bit before I take Warren there so it will be more recognizable to him.


Today, I also need to plant the seven potted mums that I bought for the deck planters into the larger deck pots. The mums are suffering from daily dehydration in this dry warm spell we are having but I’m sure they are better off outside in the sun than in the sunroom. They just need to be in more and better dirt where I can easily keep them sufficiently watered. I will plant trailing ivy and vinca from our garden beds around them and hopefully they will be lush and beautiful by Jay and Kate’s wedding celebration garden party in October.

It’s already almost noon. I have fed Warren one feeding while he slept and he hasn’t stirred since. He seems to be resting comfortably.

I had best get on with my day. I will enjoy working in God’s Big House today – that’s what I’ve always called our Gardens. Thanks for checking in with us. I pray that it is a good and enjoyable day for all of you, too!
 
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