Prayers please

I am not a religious person by any means, but I want to ask for some prayers for my grandmother.

A little background. She was diagnosed with lung cancer almost a year ago. About 3 weeks later (it seemed) she was also diagnosed with colon cancer. She wasn't a candidate for the lung surgery to remove the mass, but they said she could have the surgery for her colon.

Now my grandma is also diabetic and her health had been declining for a while beforehand, but she was still able to do for herself (walk, cook, etc.) She wasn't taking her medication when she was supposed to, falling alot, etc ...

She had the colon surgery which was a success (they removed almost all of it). About 2 weeks after surgery - in the nursing home for rehab, we all noticed that she just wasn't herself.

My grandma is not the most emotional person in the world. Some may even say she is cold (not in a bad way) - but that is her - we were used to it. You always felt loved, even tho when you would say I love you to her - she would reply with "me too" rather then I love you too. She never had a problem with hugs and kisses tho. We always got a ton of those. The reason I am telling you this is because she changed to this extremely emotional person - crying everytime you would visit her - saying I love you all the time. I am not going to lie and say I didn't absolutely love it. But, she had no clue where she was, she would fumble her words, she had no energy to walk, she could barely feed herself.

The doctor's kept saying that it was just the effects of the anethesia - some old people take longer to recover. But she wasn't getting better. They later found out that during the surgery, she suffered some brain atrophy and the woman she was now - was probably the way she would stay - for good.

She went into an assisted living home, sharing a room with her mother. The good thing was that grandma was still as fiesty as always - being snarky any chance she got, but the emotional part was so hard to deal with. She would cry when you would leave, she would cry when you arrived to visit - thinking she hadn't seen you in months even tho you were just there they day before. She was/is also wheelchair bound. If you stand her up, like to get her up the stairs at my parents house - you have to guide her because it is as tho she has forgotten how to use her legs. They get all jumpy and spasm and then she will just fall.

This went on for awhile when they decided to put her on a kind of anxiety medication. Talk about a change. She no longer begged to go home, or get her out of here. She was so happy and pleasant when you would visit. No more crying. And, the best part - she was emotional in a good way - still saying I love you alot.

Then she changed. I noticed it and mentioned it to my mom after one of my visits. She visited and noticed it as well. Another UTI! They got her medicated and went from there. But she wasn't getting better. They said she had urinary retention, couldn't pee on her own. So, they catheterized (is that a word) her. They said it may be temporary, then they said indefinately.

2 weeks ago, they decided to take the catheter out. She was able to go by herself again. She was so miserable, always trying to take it out - succeeding at one point. Well, a couple days ago, my was told that they think the UTI is back. Grandma is tired - barely eating, always wanting to sleep. She is miserable and just not herself at all. Now a UTI for some may be no big deal, but for someone with dementia ... it can be bad

It scares the crap out of me. I remember my Babcia (her mom) doing the same thing shortly before she passed. Grandma never says she wants to go to that she is done ... but I can't help but feel that she is quietly giving up. It bothers me to think she is hanging on because of mom, or me, or anyone else. Yes I want her here - no question - but I want her here because she wants to be here - not to make me or mom happy. And let's face it - her quality of life right now stinks.

I remember when my dad was going through this with his mom who had congestive heart failure. He wanted her to hang on because he wasn't ready to let go. And she did. At the hospital - the day she passed - he told her if she wanted to go, that it was ok - that he understood. He walked out of the room to meet me outside (I was driving up to see her at) and as he walked down the hall - my aunt called to him. He walked in and she was gone. Just like that. As if she was waiting for my dad to say those words. I missed her by 5 minutes literally.

It isn't fair to make someone hold on just because you aren't ready to let go. We aren't feeling what they are feeling - we only see it. I know that it is going to be hard and I know I am going to have a break down if and when she does go - but I am conforted with the fact that she will go because she is ready. I have spent so much time with her over the past year and have some wonderful memories - even if she wasn't really herself - I was there.

Wow, I really wrote a book didn't I? I guess I needed to get that out for while. I just ask that if you have any to spare, please say a prayer for grandma that she gets better. That she becomes comfortable. Please say a prayer for my mom - who is overwhelmed and stressed worrying about what she is supposed to do next. She doesn't get a break or time her herself. Other then myself, no one else goes to see grandma often - but that is a whole nother rant. She spends so much time worrying and taking care of everyone else - that she forgets she needs the same thing. I worry about her as much as I worry about my grandma.

Sweetie, my mom is diabetic, too...being diabetic makes things more difficult with someone with dementia. When one has an infection (uti for example) it causes one's blood sugar to rise and increases confusion. However, after the infection is resolved the extra confusion should go away. The problem with utis is that they are often recurrent and can be tough to get rid of. Catheters are also always a situs (Latin for site) for infection. It cannot be helped. This is what your Grandma has been enduring. If they could clear up the infection, she would feel a whole lot better.

My mom has changed a lot, too. She is a kinder, sweeter version of herself and that doesn't bother me in the least. She is loving and appreciates me in ways she never did before. That is part of the gift that I have received for being there for her.

I was lucky. When I was in law school, I told my parents that they had to create advance directives because I really didn't want to have to make certain choices for them. I felt it would be easier to just follow their wishes. It is a great idea in theory but not so clear cut in practise.

Your mom and I met and talked about being a caregiver. There are wonderful blessings associated with knowing that you are there for a parent but there is a lot of sacrifice and heartache as well. It is a long goodbye and one is powerless to do anything about the progression of the disease. However, I have been told that my mom has been so stable because she sees me everyday and had I not been there for her as I am, she would have declined more rapidly. It makes me feel better knowing that I have improved her quality of life.

Life and death issues are always hard. I try to do the best I can with the information I have at any given moment and make decisions based upon what I can live with. I do not want any regrets or guilt. No woulda, coulda, shouldas. One of these days and it may be sooner than I like, I may have to let go. Hopefully, I will be able to do so with grace but I know it will be very painful. I am a very sensitive person and her death will make me an orphan.

I have been keeping your family in my thoughts and prayers for a while now. We should try to meet again for coffee when things settle down a bit.
Hugs, Susan

I'm sorry!!

God bless her, and you.

Buzz

Its a hard thing to work through Heb, we are thinking of you.

Your grandmother, homecook, and you are in my thoughts.

PieSusan said:

The problem with utis is that they are often recurrent and can be tough to get rid of. Catheters are also always a situs (Latin for site) for infection. It cannot be helped. This is what your Grandma has been enduring. If they could clear up the infection, she would feel a whole lot better.

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Susan, I do understand what you are saying. But the fact of the matter is that they are never back to normal. At least in my grandmother's case. She has had 4 UTI's in the past 3 months. After every UTI, she has gotten worse. Yes, she is more comfortable - but her mind is a little less there then before. Someone like my mom's brothers who see her once every year may not notice it - but mom and I do because we see her every couple days.

They are supposed to be putting her on a high dose of medication which she will take indefinately to catch one before it happens. In my mind now, I am coming to grips with the fact that everytime she gets a UTI, a little more of her mind goes.

That is exactly the problem with urinary tract infections with diabetics. If they could clear up the infection (with the right antibiotic) and make sure that she is kept scrupulously clean when she goes to the bathroom, and washed her hand etc. she would have a shot at getting over the infection for good. But they do tend to recur over and over.

I don't think that the uti is causing a little more of her mind to go--although it may be progression of the disease. If they could clear up the infection--she would not be as confused--that I know for a fact.

You are going to need a lot of courage to deal with this, sweetie.

Positive energies from me to you and your family, Heb.

My grandmother has been gone for 17 years, but I still can't think of her without tearing up.

Lee

You both are in my thoughts and prayers.

Thanks everyone. I really appreciate it alot! I am not one of air out my dirty laundry - but sometimes it really is therapy to talk and I am glad I have you all to talk to.

Absolutely Heb.... I will keep you both in my prayers!

We will keep both of you in our prayers here!

I'm really sorry Heather. You know, sometimes people have these things called TIAs. They are little mini-strokes. Sadly, they can cause really profound behavior changes that are sometimes permanent. It sounds to me like extreme emotional changes could be related to a TIA.

I know exactly what you are saying about being worried she may be hanging on because of you and your mom. I read a book by Helen Kubler Ross about death and dying and it addresses this. She suggests that if your loved one is suffering and there is a moment of clarity to talk to them, you should let them know that you love them so much and you will miss them more than they will know but you will be all right when they are gone. I know it sounds creepy but apparently she did a huge amount of research by talking to hospice patients. Universally, they all said they were ready to pass and have their poor quality of life end, but they were very, very worried about those they would leave behind. Perhaps at some point you can let your grandmother know that you will be OK and will take care of your mother and you will meet her on the other side one day.

Hugs to you, dear. I miss my grandmother like crazy and she's been gone 33 years.

good thoughts to you and yours....

Fisher's Mom said:

I'm really sorry Heather. You know, sometimes people have these things called TIAs. They are little mini-strokes. Sadly, they can cause really profound behavior changes that are sometimes permanent. It sounds to me like extreme emotional changes could be related to a TIA.

I know exactly what you are saying about being worried she may be hanging on because of you and your mom. I read a book by Helen Kubler Ross about death and dying and it addresses this. She suggests that if your loved one is suffering and there is a moment of clarity to talk to them, you should let them know that you love them so much and you will miss them more than they will know but you will be all right when they are gone. I know it sounds creepy but apparently she did a huge amount of research by talking to hospice patients. Universally, they all said they were ready to pass and have their poor quality of life end, but they were very, very worried about those they would leave behind. Perhaps at some point you can let your grandmother know that you will be OK and will take care of your mother and you will meet her on the other side one day.

Hugs to you, dear. I miss my grandmother like crazy and she's been gone 33 years.

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Terry, that is exactly what I did with my mom when she was just in the hospital. I told her that she was very sick and she had a choice to make. She could join my father or choose to stick around but if she did she would have to eat and do her rehab and not be lazy. I let her know it was up to her and she insisted that she wanted to live and she seems to be making a pretty remarkable recovery considering all she has been through.

I think she is bouncing. I am almost afraid to post it lest I jinx it somehow. There are so many bugs flying around, she could cycle back in the hospital like my father use to. All one can do is take things day by day. If you try to focus beyond today, you will stress yourself out needlessly. We don't know what tomorrow will bring and it is best not to borrow trouble or worry. I know, from experience it is far easier said than done. Your mom and I talked about it.

In the end: My advice, just be there and love her. When she is ready to go, she will go. You can let her know that you are fine and well cared for if you believe that is one of her worries but as Warren Zevon said, "Enjoy every sandwich."

(((((heb and homecook)))))

heb1976 said:

Thanks everyone. I really appreciate it alot! I am not one of air out my dirty laundry - but sometimes it really is therapy to talk and I am glad I have you all to talk to.

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that ain't dirty laundry, heather. it's just a piece of your soul that needed to get some air.

many of us have, are, or will go through a lot of the same things, so please know that we feel for you, and will keep you in our prayers.

buckytom said:

that ain't dirty laundry, heather. it's just a piece of your soul that needed to get some air.

many of us have, are, or will go through a lot of the same things, so please know that we feel for you, and will keep you in our prayers.

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Thank you for that bt. I couldn't respond for lack of the ability to put it into words what I wanted to say.
This did just fine.
Hugs to you Heather, homecook and you too bt, as silly or as flipant as you try to make us think you are.

We will definitely keep you both in our thoughts and prayers!

Fisher's Mom said:

I'm really sorry Heather. You know, sometimes people have these things called TIAs. They are little mini-strokes. Sadly, they can cause really profound behavior changes that are sometimes permanent. It sounds to me like extreme emotional changes could be related to a TIA.

I know exactly what you are saying about being worried she may be hanging on because of you and your mom. I read a book by Helen Kubler Ross about death and dying and it addresses this. She suggests that if your loved one is suffering and there is a moment of clarity to talk to them, you should let them know that you love them so much and you will miss them more than they will know but you will be all right when they are gone. I know it sounds creepy but apparently she did a huge amount of research by talking to hospice patients. Universally, they all said they were ready to pass and have their poor quality of life end, but they were very, very worried about those they would leave behind. Perhaps at some point you can let your grandmother know that you will be OK and will take care of your mother and you will meet her on the other side one day.

Hugs to you, dear. I miss my grandmother like crazy and she's been gone 33 years.

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You know 8 years ago my mother had a stroke. Six months later she had 2 episodes of TIA's. That's when little by little she started going down hill. I'm sure she had some permanent damage that we weren't aware of at the time. A couple years after that is when she kept falling, forgetting her meds including her insulin. I really think that's when the dementia started in. It's a known fact that a diabetic that poorly controls her meds leads to dementia. Now with all the other problems she's having including the surgery it's all irreversible. Controlling her infections is not going to change a thing. She is wheelchair bound and all she does is sleep all day. Some days she knows me other days she thinks I'm Heather. I've accepted that and only want what is best for my mom. I have Hospice coming in to see her a couple times a week and they are a blessing in disguise. She is in God's hands now.
Thank you all for caring!!!

Barb

Its a hard time for sure, but I hope some comfort comes to you guys knowing that we are here for you at any time even if just to air out feelings inside. {{{{HUGS you two!!}}}}

Ah, Barb. I am sorry. I did not know that hospice has gotten involved. At least you know that she is receiving comfort care and will have all her needs met. You are right, she is in G-d's hands and may He bless her with a peaceful passing when it is time. I am so sorry. Hugs to you and Heather.

Heather and Barb you are in my thoughts. This is one of the hardest things to go through.

I am the emotional support for my Wife who is dealing with the same problems, a mother with Dementia and Diabetes.

Someone holding onto a dieing person because that someone isn't ready for the passing is selfish.

Letting someone know it's ok to pass on is a bit creepy, but sometimes it needs done.

These things are not an issue for Wife, unfortunately they are an issue for her seven brothers and sisters. But then Wifes siblings have many issues.


I hope everything works out for the best.
.

Thoughts and prayers to you both.

Prayers are en route Heb!

Fisher's Mom said:

I'm really sorry Heather. You know, sometimes people have these things called TIAs. They are little mini-strokes. Sadly, they can cause really profound behavior changes that are sometimes permanent. It sounds to me like extreme emotional changes could be related to a TIA.

I know exactly what you are saying about being worried she may be hanging on because of you and your mom. I read a book by Helen Kubler Ross about death and dying and it addresses this. She suggests that if your loved one is suffering and there is a moment of clarity to talk to them, you should let them know that you love them so much and you will miss them more than they will know but you will be all right when they are gone. I know it sounds creepy but apparently she did a huge amount of research by talking to hospice patients. Universally, they all said they were ready to pass and have their poor quality of life end, but they were very, very worried about those they would leave behind. Perhaps at some point you can let your grandmother know that you will be OK and will take care of your mother and you will meet her on the other side one day.

Hugs to you, dear. I miss my grandmother like crazy and she's been gone 33 years.

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She has had those before. Way before the cancer diagnoses. She went in for a procedure for a blocked artery and from what I remember (and I could have it wrong), she started stroking. So they never finished the procedure. I remember when she had them and my mom having to make the decision quickly to give that medication so there were no effects from the stroke. They said that she would definitely have them again. She of course did, on my 22nd birthday no less. But she has never had any since then. UTI's make dementia alot worse - added in with the diabetes too. Mom always looks for certain signs as do I. Facial drooping, sticking out her tongue, etc ... When she doesn't have a UTI - she is good - well as good as she is going to get.

That sounds like a good book. My grandma has said before all this started happening that she just wanted to die. I always told her to just stop, that I couldn't listen to it. She would always tell me it's going to happen so I need to get used it. And I would tell her - I will deal with it when it does - you're not dead yet. I think maybe mom and I will go and sit down with hospice together - like a counceling thing. That way I know how to comfort her and still be able to comfort myself. Alot of times, I stay strong for mom and do not grieve myself.

Editted to add : didn't know Mom has responded to that already! LOL

Heather, you need to take care of yourself, just as your mom needs to take care of herself. It is ok to cry and show grief. Keeping everything inside and trying to be strong for each other doesn't help either of you. Share, let it out. You both will be better for it and a whole lot closer (if that is at all possible--you are pretty tight as it is). Your hearts are in the right place trying to protect each other but you are each going through a hard time and sharing grief makes it easier. Try to focus on good memories. It is what I do. My mom took her grief out on me when my dad died. She was miserable and I was miserable. She has since apologized but it was a very tough period. Don't do that to each other. Just love each other, give lots of hugs and support and don't be afraid to cry. It is healthy and normal.
You are both still in my prayers.
(((((Heather)))))

PieSusan said:

Heather, you need to take care of yourself, just as your mom needs to take care of herself. It is ok to cry and show grief. Keeping everything inside and trying to be strong for each other doesn't help either of you. Share, let it out. You both will be better for it and a whole lot closer (if that is at all possible--you are pretty tight as it is). Your hearts are in the right place trying to protect each other but you are each going through a hard time and sharing grief makes it easier. Try to focus on good memories. It is what I do. My mom took her grief out on me when my dad died. She was miserable and I was miserable. She has since apologized but it was a very tough period. Don't do that to each other. Just love each other, give lots of hugs and support and don't be afraid to cry. It is healthy and normal.
You are both still in my prayers.
(((((Heather)))))

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Sounds like good advice.... yer taking it right Susan????