So my grandma is dying...

[ChickNanny13]

 

[chickendreams24]

Oh wow

I'm praying for you and your family.

I wish I had easy answers for you or any answers. I wish there was an easy assurance, a fix, a way to send hugs through the internet.

How long ago was your Grandma diagnosed? Do you know what stage they said she was in?

I went through this with my Grandpa he passed away the week of Thanksgiving 2017. He was diagnosed 16-17 years before that, but we caught it pretty early and I don't doubt Grandpa fought to stay with us until the end.

There's no question Alzheimers is a horrible, terrible and tortorous disease. I wouldn't wish it on anyone. It effects not only those who have it but everyone they love and the effect radiates out. It's almost tangible. I'm not an expert but I can share my story, my experiences with you and I pray that God give me the words to give you peace and help you to know the path He want for you.

That being said it also gave my Grandpa and all of us around him something. Something that nearly everyone loses as they grow. See while some, maybe the majority, of Alzheimer's and dementia patients can become suspicious, angry, or violent my Grandpa did not. He became like a little boy innocent and sweet. Loving and gentle.

See my Great Grandpa had Alzheimer's in the late 90s back when it was something that was hidden. I guess it was more newly diagnosed then. My Great Grandma hid it from the family covering for her husband until she passed away. It was only then that we noticed my Great Grandpa's erratic behavior. Underwear on the outside of his clothes, peeing in potted plants, wandering, getting lost, confusion. He moved in with my Grandma and Grandpa(his son) until his wandering became dangerous for him. He was placed in a nursing home. My Great Grandpa became erratic and at times angry with his Alzheimer's. He shadowboxed and ran around yelling. As children it was frightening for my brothers and I when he became very agitated. My Mom tried to keep us from the worst of it but allowed us to see him and we visited rather often. Some would say children shouldn't see such things but we had been through much in our lives and we were never in danger. My mother is a RN.

Great Grandpa passed away at the age of 90.

4-5 years later my Grandpa got the diagnosis. His worst fear. Losing himself. A strong farmer my grandpa said the last thing he wanted was to be placed in a home and languish like my Great Grandpa did(There was some question as to his care and if the lack of care in the Alzheimer's wing was the cause of death- my grandparents were the only ones suspicious so it wasn't pushed.)

**I make the above note not as a judgment of any or all facilities but merely because through our experiences we learned there will always be places and even people in good places that don't care the way they should and places that are also understaffed. Etc.

Even now I think Alzheimer's is something that touches so many but so few really know anything about. If you haven't had first hand experiences chances are you know next to nothing about Alzheimer's.

We kept my Grandpa home as long as possible. My mother and I even moved in full time for over 5 years to care for my grandparents. Grandpa with Alzheimer's and grandma with dementia. Of course this was when they could no longer do it themselves.

Grandpa did begin to wander and received a tracking bracelet by the police for his safety. Alarms were placed on the doors but although he would only seem to shuffle when watched. He could move! LOL we used to joke that he would run when we weren't looking. When the wandering became so bad that it wasn't safe for him to stay home any longer we did have to finally place him in a Alzheimer's care facility. It was fall and into winter and two or three times he wandered without a coat and ended up in the shallow creek down the road from my grandparents house. Somewheres there's still a pair of slippers down there of his. The bracelet allowed them to triangulate his position but it still sometimes took hours in the dense woods surrounding their house.

My Grandpa had always loved to be outside and so we hadn't locked him in the house because it was his greatest joy and could also trigger him to get upset. Still considering it all he seldom wandered until the very end of him being at home I can think of only two times both of which he was out in public and Grandma left him in the car, thankfully he didn't drive away(these we're also both before Mom and I moved in)

I have no doubt that him staying at home for so long allowed him to stay better for longer. He also lived in that farm for 40+ years which helped for a long time. We also took him to Bible study for quite a while even as he got worse the gentlemen in our church graciously took him into the men's bible study while we went to the women's in a different part of the church. The more interaction Alzheimer's patients have the longer they take to decline. Exercising their mind helps in all kinds of ways including conversation. Grandpa loved puzzles and word searches and various other things.

Now when we placed him he lived three more years before he passed away. In fact although he declined he was pretty good until the last year: specifically the last 6 months. He was mobile the entire time until the last month and continent until the last month or two.

My uncles, aunt, cousins and even my Grandma were in denial for a good long long while before they came to terms with the Alzheimer's. My uncles even both said that Grandpa was already "gone" as in dead because they didn't see the man he had been there. Now in my own opinion anyone who hasn't ever spent a longer time than the average visit with someone with Alzheimer's is not getting a true picture of that person and what is or isn't there. Frankly I don't doubt for even a moment that it's there it's all there. It's locked inside and seldom can they access it but it's there all of it and you'll see snippets. More about that in a moment.

Now this is the part I think is most important for your situation regardless of how far along your Grandma's disease is or isn't. She is inside there and it sucks when life gets busy and things get forgotten I know I've been there but move forward and think about what you can do. Forgive yourself. I'm sure she would want you to. Find things that bring her joy if you can. A stuffed animal, maybe a visit from a therapy dog or cat, flowers, balloons, a favorite food.

So many of my family stopped seeing Grandpa when he was placed into care. A few even stopped seeing him before that. One of these is one of my brothers he stopped seeing Grandpa afraid of the memories of my Great Grandpa. Instead of asking us if he was how Great Grandpa had been he didn't have any contact with him for three or four years before my Grandpa died and only saw him maybe once a year for several years before that.

As a granddaughter I too had no say in my Grandpa's care it's hard when you loved them so much and want what's best for them but some or all of the people in charge have their heads in the sand. Despite that for all the years I lived there and a couple before him and I talked and I think maybe I was the only one who asked him how he felt about the Alzheimer's, my aunt and uncle wouldn't listen and my other uncle wouldn't at first either.

Now if you would like to I would gladly talk to you more about it all and about your Grandma. I don't know what stage she's in but I will say that she may rally even in the final stages(my Grandpa did several times in his last year but we never knew it until his final 2 weeks when hospice was brought in). Don't fear hospice, they were a Godsend for us.

Now I know Grandpa broke most of the rules for Alzheimer's. When he was diagnosed they gave him 7 years I've already told you he lived almost 17. Of course 7 was a conservative estimate and back then there weren't as many treatments but he broke other rules too.

He never lost the ability to feed himself until he was in the very final stages like a month or two before he passed. He did go through 2-3 non-responsive times in his final maybe 8 months it wasn't until hospice told us that these times were coming to the end of life and then he rallied. All but the last one of these times were connected with an illness, including a MRSA infected bed sore due to how he liked to sit on his tail bone(he also had pneumonia that time). The facility missed the sore and didn't care for him well. He was rarely bathed, etc etc they also didn't know how to deal with him sundowning and placed two inexperienced girls in the wing at the same time without other supervision. They called it training for the girls. Anyway we of course moved him.

He was rushed to he hospital with a high fever and we were told he may not make it and the sore probably wouldn't heal however long he lived. My Grandma, Mom, Aunt, and Uncles(mostly the three latter) almost chose not to treat him with the harsh drugs. I went in if you can believe it with fresh strawberries and a hope and a prayer that he would become responsive again and they would change their minds. While they were at dinner my DH2B and I stopped by and found Grandpa awake and trying to remove his catheter. Ouch! I distracted him with the strawberries and that along with a couple other moments including him telling us he loved us and knowing my aunt's name they decided to treat him. The sore healed in between 3-6 months and he lived another year.

Grandpa was moved 5-6 times in the last year to 18 months of his life while we searched for a place that would give him proper care. One thing that repeated itself again and again at all these places were the lonely other residents most of which we never saw a single visitor for even though someone went to see Grandpa nearly every day. It was hard and we would be surrounded by multiple people with Alzheimer's wanting to tell us stories and talk to us and play with us and wanting hugs or a friendly smile. For too many of them their families just dumped them too busy to visit, too busy to deal with the "burden". One woman had fingernails that were never cut since who knows when wheeled up and asked us to help her. She had torn a nail way back and it was tearing more and more as it caught and none of the staff would help her. We cut and filed all of her nails and she was so happy she cried. The staff said she wouldn't let them but we had originally told them and they hadn't addressed it at all not even with a bandaid to hold the nail down. We later found Grandpa left in bed all day without meals or his medications because he wouldn't get up. We moved him again.

On and on it went I won't lie.
The last facility Grandpa was at for only two days when he came down with a fever and become non-responsive. He was again rushed to the hospital but after tests were discharged still in that state. The hospital told us they had no ideas. Hospice told us a few days later that what we were seeing were the end stages of life. Grandpa was dieing. She told us the symptoms and that we didn't know how long he had. She also said he could rally, and when she described it we realized he already had. We decided after a few days to bring him home still praying he would rally.

He did that first day she told us. For just a bit he woke up and I fed him some sherbet and he had some water and juice. He knew my name and my Grandma's he addressed us both and told us he loved us he even joked a little. Then he was almost completely silent again. I did get one last I love you after he was home.

He passed away three days after we brought him home. Surrounded by my Grandma, Mom, aunt, uncles and my DH2B and I. He waited until all of us told him he could go home and that we loved him and we'd miss him but we'd be okay.

Even when my Grandpa didn't know us by name he knew he loved us and most of the time he knew me even though I'm one of the youngest grandkids. After Grandpa was moved I moved in with my DH2B and Grandpa would ask my Mom and Grandma about me from time to time when they visited without me. Yes sometimes he didn't know us at all and that increased the worse he got. Sometimes it felt hopeless but then he would say our names and tell us he loved us.

I hope this gives you hope and peace and I pray you get a little more time with your Grandma.

 

[Ninjasquirrel]

Thank you for your story. I dont know what stage she was in or what stage she is considered in now. What occurred yesterday is a rapid decline so she might be on 3 now. Shes hallucinating and doesnt recognize where she is or anyone. Your great grandpa sounds like he lived a long wonderful life. My grandma just lost her husband(my grandpa) to a heart attack 5 years ago. I never spent or knew much time with them because they lived far away and my mother dispised them. They still sent us money every Christmas and on our birthdays but thats about it. I lost my grandpa on my mothers side 10 years ago to dementia. I lost my mother to pancreatitis 10 years ago as well. I just have two grandparents left. I am unmarried and had hoped that they would make it to my wedding but now im not so sure.

You are very lucky that your grandpa went child like instead of delirious. We had to go thru that with my SOs grandfather before he passed last year. He would steal clothes, fall frequently because he'd forget he needed assistance to walk. My SOs mother struggled so much with it. I remember her calling us late at night to meet her at the er because he had a heart attack. She was inconsolable saying how she needed to pray for him but it wouldnt matter because he never accepted Christ. It was rough seeing the whole family go through that. We even experienced the horrible effect of how people in the medical industry can manipulate and hurt. He had a nurse that used to visit who stole from him. He also was taken to a facility from the er and they said that they couldnt admit him in his condition. They recommended a facility...a mental ward. It was due to how violent he became. We did not allow it to happen and he was sent back to the icu where he stayed until he died.

I appreciate all of your kind words. It means a lot to know that people are there for you. Please keep the prayers coming.

 

[chickendreams24]

Did she possibly have a stroke or maybe she has some kind of infection? Grandpa had multiple urinary tract infections over the last 6+ years of his life. Anytime someone elderly but especially someone with dementia or Alzheimer's is sick especially with a fever and most especially if they're in the hospital their mental state will be much worse.

I also don't want you to think that my Grandpa never sundowned or was never delirious he was. While he was continent for nearly all of it he didn't always know he had to go into the bathroom. Or when it was towards the end he often thought he was going where he should but as an example one time he peed all over his roommates bed sure that he was peeing in the toilet. Yes he hallucinated but he wasn't violent really mostly sweet and confused. If he became agitated my mother and I could generally always refocus him on something else and he would calm down. It's all about how you react/handle it for the most part.

Also when Grandpa didn't know us he would often call us other names of people he knew/had known. Because they regress in their memories they don't know they're the age they are. Grandpa always wanted to go "home"/ his childhood home.

My Grandma on bad days usually got called my Grandpa's mother's name. It helped that they were high school sweethearts and had known each other since they were quite young. Of course my Grandpa often thought Grandma should look younger.

Eventually they did have to medicate him in the evenings when he would sundown. This started at the first place we took him that didn't have experience with someone like him. Although they said they specialized in this wing in Alzheimer's care every other patient there was in a wheel chair many weren't able to speak and when Grandpa went there he was still pretty well off. There was only ten beds in that wing but they didn't know how to redirect him. Well I should say the regulars did pretty well but that is the place that put two inexperienced girls in there alone with all ten patients. Unfortunately Grandpa sundowned and got upset. One of the girls tried to push him where she wanted him and he pushed back. She wasn't hurt at all but they filed a report and it went on Grandpa's permanent record that he was violent. It made it very difficult to find a place willing to take him. Despite that more than 90% of the time he was happy and smiling and friendly, easy going and compliant. Every facility we ever took him to everyone just loved him. It was only when he sundowned that he was ever trouble and he just needed some care from someone with kindness and patience who understood how to redicred him. In every place he went he loved to wipe down the tables after they ate and help put dishes away(glasses and such) and stack blocks as he got worse and the list went on and on.

Both my Grandpa and Great Grandpa lived long wonderful lives. My last memory of my Great Grandpa is actually of him calling me my mother's name because I look almost identical to her especially as a child. So although he didn't know me he thought I was my mother because he thought she was still a child.

No matter how bad it gets there is always a chance for a moment or moments of clarity/lucidity. There will likely still be good days and bad for your Grandma and even if she doesn't "know" you as in doesn't recognize you on the surface I truly believe she does more deeply.

Also my Grandpa did have a couple times where it was a rapid decline especially when he was ill and taken to the hospital. Also my Grandpa did hallucinate various things. Sometimes he thought people were there that weren't, he thought my Grandma's antique composition baby dolls on display were real children. Etc etc.

In my Grandpa's final three days at home nearly the whole family came and saw him and said their goodbyes. By that time he was mostly sleeping and not responsive but although his eyes never fully focused by that point except once or twice and he barely spoke and when he tried it was a hushed hoarse sound. Despite all of that when he looked at us or heard us talking he would smile.

While so many of the family all the grandsons(except my DH2B) and all the granddaughters except for me and even my uncle's(except one uncle once) cleared out when it was time to change, bathe, even just to turn him. A few of us stayed, helping the hospice nurses when they came and doing it on our own when they weren't there. My Mom of course knew all about it and while I knew some I learned a lot more as did my aunt. One time when we were changing him I had him on the edge of the bed when he woke up and became fearful of falling. There was no way he was going to fall and I talked to him and told him that. I told him I had him and I'd never let him fall and he relaxed and lay back smiling softly at me. Even then he knew.

My prayers are continuing for you, your Grandma and family. I know it's hard not having a real say but please don't give up your family needs to come together for your Grandma.

Is your Grandma saved? We are blessed in that all of the family we have lost(sadly it's a long list) including my Grandpa and my Grandma whenever she goes(may it not be for years yet) have been/are saved.

I also understand your desire to have your grandparents at your wedding. I wanted my Grandpa to walk me down the aisle but that couldn't happen. Instead I will wear his cowboy boots down the aisle. My father was not really a reliable parent and my grandpa stepped up and was really like a father to my brothers and I so the loss was very difficult for the three of us.

Also differently than most traditions I was a pal bearer at Grandpa's funeral.

 

[GoldenChooks]

As everyone else has said, prayers for you, your grandma, and your family. I hope all goes well and I'm so so so sorry you have to go through this, we are here if you need to talk to us

 

[ButtonquailGirl14]

I am so sorry and will be praying... I was so in shock when my grandma was murdered on thanksgiving..... it was one of the worst days of my life only compared to my great grandmother who died a couple weeks after her... they think she died because of stress and shock about her daughter, she was very healthy otherwise... we had to move out of her house that we were helping her care for and it was sold under the table by my great Aunt (she is evil) and we had to be out in 1 month, then it was torn down to build a mansion and to top it off she (my great aunt) convinced almost are whole family that she hated and feared us and that we abused her...(I wanted to cry for the rest of my life) because she wanted us taken out of her will (my great grandma was one of the people I Loved most in my whole life!) and they never spoke to us again (I never thought they would belive that about us) and when we moved here we were bullied by every kid in the community (real Christian kids here) and were not able to walke throught the community without being told to "Get Home!" by the other kids... they went so far as to come on our property and told us to leave because they always play on this hill (we own it)… but everything is fine now, I will always miss them, but can't wait to meet the in heaven

 

[dotporter]

Hugs and prayers.
My grandmother had alzheimer's and dementia. She spent the last year of her life hallucinating. We were lucky though. She thought she was on a cruise. She often talked to old friends and her late husband.

I spent the year as "the cruise director". I never did correct her or try to tell her where she was or who I was. I was glad she was somewhere pleasant in her mind.

I pray that your grandmother finds as pleasant a place, and finds peace.

 

[ButtonquailGirl14]

Thank you for your story. I dont know what stage she was in or what stage she is considered in now. What occurred yesterday is a rapid decline so she might be on 3 now. Shes hallucinating and doesnt recognize where she is or anyone. Your great grandpa sounds like he lived a long wonderful life. My grandma just lost her husband(my grandpa) to a heart attack 5 years ago. I never spent or knew much time with them because they lived far away and my mother dispised them. They still sent us money every Christmas and on our birthdays but thats about it. I lost my grandpa on my mothers side 10 years ago to dementia. I lost my mother to pancreatitis 10 years ago as well. I just have two grandparents left. I am unmarried and had hoped that they would make it to my wedding but now im not so sure.

You are very lucky that your grandpa went child like instead of delirious. We had to go thru that with my SOs grandfather before he passed last year. He would steal clothes, fall frequently because he'd forget he needed assistance to walk. My SOs mother struggled so much with it. I remember her calling us late at night to meet her at the er because he had a heart attack. She was inconsolable saying how she needed to pray for him but it wouldnt matter because he never accepted Christ. It was rough seeing the whole family go through that. We even experienced the horrible effect of how people in the medical industry can manipulate and hurt. He had a nurse that used to visit who stole from him. He also was taken to a facility from the er and they said that they couldnt admit him in his condition. They recommended a facility...a mental ward. It was due to how violent he became. We did not allow it to happen and he was sent back to the icu where he stayed until he died.

I appreciate all of your kind words. It means a lot to know that people are there for you. Please keep the prayers coming.

I am so sorry... I all my real grampas died before I was born, I have some Grampa figures in my life though!

 

[Birds of a Feather]

Remember that there is something bigger than all of us, that created all beings, that is watching over her and all of us. Sending prayers that she'll get better.

 

[Ninjasquirrel]

No uti and for whatever reason they did not perform a mri. I seriously think ER doctors just dont care anymore. It used to be you could go to the er and they wouldnt let you leave unless they knew what was wrong with you. Now they rush you out the door and tell you to follow up with your primary care doctor.

Buttonquailgirl14...she was murdered?! I wont make you discuss it as im sure thats horrible for you. I know it happens but im always shocked to hear it. It should not be common place.