How dementia simply erases the world around someone....

[Mililea]

I'm a bit troubled and reflective today, so I just want to get this off my chest a bit.

As I've already mentioned in other places, I live in a multi-generational housing project, it's a bit like a small village and a cross-section of all humanity. It is a very nice form of living and we all know each other very well here and also look after each other and help each other as much as possible.

For some time now, one of the flatmates (74) has been suffering from dementia.
Her relatives live about 50 km away from us. But they still came to visit from time to time. When they noticed that it seemed to get worse, they decided together with her that she should move into a nursing home at the end of 2021. H. agreed and went to visit her relatives over the holidays and then came the first day in the nursing home.

She didn't feel well at all and had something like a panic attack. She argued with her relatives, got in a taxi and drove here home and wants nothing more to do with them.

Before all this, there was a group in the house who did not approve of her going to a home. Others were more like the people who said it was better because it could be dangerous for her to live on her own. She had already fallen so badly that she had to go to hospital three times. Most recently she had a fracture of the neck of the femur, which was operated on. Since then she has been walking on a rollator. There were a few inconsistencies in our house about the move to the home. I was part of the group that was more in favour of the move, because I thought it would be rather problematic for us to be able to take care of her.

So now she is back. I participate in this by cooking for her. A nursing service comes three times a day to give her her medication. Others help her with other everyday things and go for walks with her, for example. It works relatively well. Except for her moments when she lies down and just wants to die, alternating with swearing at people that she can do everything herself, that she wants to eat almost nothing, drinks little, to the point where she is almost unconscious due to lack of fluids. Sometimes she walks around the house with her walker and doesn't know where to go. Then she has some bright moments again... You can see how she's still trying to cover it up and look normal.... She used to be responsible for organising the cakes in our in-house café, baked some herself and also served in the café. Today, when she was with us, she told us that she no longer works there, but only bakes cakes. That's not true, of course... But in her mind it is apparently still the truth. It is just sad to watch her slowly becoming a shadow of her former self and losing the world around her.

Today she was at our place for dinner and was really looking forward to it (although she had practically forgotten about it within an hour). Then, as she sat at the table and ate a bite or two, she just threw up for some unknown reason. I quickly managed to get her bucket. She was just a mess and wanted to go home to bed. Which I can well understand. I then took her back to her flat and she apologised a thousand times. I hugged her goodbye and she gave me a kiss on the cheek. It was an emotional moment somehow.

She was such a fun, loving, independent and good-natured woman before she got sick. It is just sad.

Unfortunately, her network of helpers still needs improvement in communication I feel. Most of them are not tech-savvy enough to be able to network smoothly digitally... I really hope we can work it out... at least until a certain point.

A few days ago, I watched the film "The Father" with Anthony Hopkins with my husband and I really liked it. In the course of the film, you experience dementia from the point of view of the sick father. It really opened my eyes a bit about some things, as I was not aware of many things from this point of view.

Thank you for "listening"... that's it for now... a thoughtful Mililiea....

 

[irjO]

Thank you for sharing that story Mililea, I know the sentiment. My grandma suffered from Alzheimer her last couple of years before passing, the progression of the illness was very hurtful to watch, I was still very young when she passed away, I regret not appreciating her more back then. I remember everything started with her changing of mood and then starting to forget things, at the end she couldn’t recognize us and she ended in a nursing home as well, every week my dad and mom used to visit her and bring her some food. Years later speaking with my parents about her life made me cry (not in front of them) because she suffered many times her entire life and she was a very happy and caring person and at the end she ended forgetting everything and everyone and passed away in her own loneliness.
I would say that appreciate that person while you can, even if sometimes it’s difficult to deal with her mental state and her situation. I think even tho she may get o a point of not recognizing anyone, at least she won’t feel alone!
Big hugs.

 

[brandon]

Yes, thanks for sharing Mililea and irjO, really touching stories.. I hadn't heard of "The Father", I'll check that out..

My grandfather has Alzheimer's, it's gotten a lot worse in the last couple years.. He and my grandma still live in their own house and she looks after him. He has a lot of trouble walking, and can't remember where rooms in the house are, or what's happened more than a couple minutes ago.. He used to try to cover it and say nothing, or pretend he knew what was going on, but lately has stopped doing that and constantly asks....gets very upset especially when there are multiple people visiting and talking at once. Often asks what's wrong with him, and says he's determined to get better.

I think the thing he appreciates the most is someone patiently telling him what's happening, or what the topic of conversation is, even if they have to do it every few minutes. Too many people just don't bother explaining, or get impatient with the repetition and say "don't worry about it"..

He wants to sleep almost all the time, but gran makes him get up and do stuff most days. If she's ever out of the room, he'll frantically call to ask where she is and if she's ok.. Actually he asks if she's ok every 15 minutes or so, even sometimes wakes her up in the middle of the night just to ask :) Bless them..

He usually remembers me and my mum, maybe because we see them regularly, but has trouble with other people... Sometimes clearly thinks he's back decades ago. Like a slow dispersion of his mind, unstuck in time... At christmas he did think my 3 year old nephew was me for a bit... If you get him talking about theology or physics or etymology he'll still talk your ear off though!

Once when I was waiting with him I asked if he was dealing with it ok, and he said "It's a nightmare. I don't understand what's wrong with me or what's happening".... just heartbreaking... all I could do was hold his hand... And as for my gran, she's utterly exhausted, but keeps going. I told her he's lucky to have her, and she replied "oh, I'm lucky to still have him, after all these years"..

 

[Alejo]

Thank you guys for sharing,

I don't have a very close experience with this, I have seen over the years how my grandma, the last one living, has forgotten details and must ask the same questions several times. And about ten years ago, I saw my grandma from my father's side, who has since passed, and she was almost gone mentally, her memory wasn't reliable.

I remember thinking then, and your stories have reminded me of it, that it must be a terrifying state, to have known yourself as a certain individual, to have learned to rely on your memory and your knowledge for decades and then suddenly reality does not respond positively to who you are anymore, it's like if you were suddenly dropped in an alternate reality, where things look similar and sound the same but the story is just different enough to make you feel completely disoriented.

Picturing myself in such a scenario, I was able to understand the anger and frustration, the hopeless drive to hold a solid identity and the emotional intensity of the experience. And witnessing that from the outside is heartbreaking.

Just a few thoughts, thank you all for sharing.

 

[naorma]

Before all this, there was a group in the house who did not approve of her going to a home. Others were more like the people who said it was better because it could be dangerous for her to live on her own. She had already fallen so badly that she had to go to hospital three times. Most recently she had a fracture of the neck of the femur, which was operated on. Since then she has been walking on a rollator. There were a few inconsistencies in our house about the move to the home. I was part of the group that was more in favour of the move, because I thought it would be rather problematic for us to be able to take care of her.

Dear Mililea,
for me it looks like this woman tries to leave this world. When old people fall and break bones they want to lay down for ever at least in my opinion. It is hard to say what would be the best for her. Hopefully the best thing for her will happen! I wish you all there a good way to deal with this situation.

Years ago I was redacting a book by Naomi Feil who created something like Validation. It was helpful for me to understand the situation of old and dement people. If you google her you will find more than this link below.

Naomi Feil - Validation & MGT

Beratung in schwierigen Lebenslagen, Demenz & Angehörige, Fortbildung und Seminare zur Anwendung der Validation nach Naomi Feil. Mal- und Gestaltungstherapie Supervision und Lebensberatung, Selbsterfahrung im Raum Wien

www.validation.co.at

 

[fifty_five]

Dear Mililea,
for me it looks like this woman tries to leave this world. When old people fall and break bones they want to lay down for ever at least in my opinion.

i lost my seriously ill mother to alzheimer's a year ago. she fell, broke her femur, in the hospital they operated and all went well, but she died of pneumonia caused by the feeding probe, inserted because she refused both food and water. covid time, so she died alone.
in those days I supported her soul so that she did what was right, her life in any case was already shit before.
up to that moment, the choice of the family, I as usual did my minority report, was to keep her at home with my father as the only care giver. big mistake, both for her and for him. i did my minority report also at the time of the diagnosis 6 years ago by the neurologist, because keto can significantly slow down the course of the disease, but in this case too, the minority report failed. what I can recommend (even if it was emotionally devastating, it was an extraordinary formative experience for me) is to talk to the family, verify the possibility of a keto diet and not take on the burden of the only care giver.

 

[Turgon]

My grandma is starting to show signs of dementia too. She's an outgoing, talkative person who loves to socialize but in the last few years her memory has declined a lot that she'll sometimes call me twice in a day and forget that we had a conversation earlier on. Her short term memory is failing and she can't remember where she puts things and easily loses track of what's happening around her, often asking the same question over and over again. Sometimes she tries to laugh it off as a sign of aging, but once or twice showed that it really worries her. Her long-term memory is excellent and she can remember things that happened 60 or 70 years ago with total clarity. I sometimes feel as if life as we live it in our modern age - not to mention the last two years - that she's retreating to a simpler, happier time for her and trying to ignore what's happening around her.

@Mililea if you haven't seen it, there's also Still Alice, which deals with a woman who starts to suffer from early onset of Alzheimers. It's been a long time since I've seen it, but from what I remember it was a good movie.

 

[Tauriel]

So now she is back. I participate in this by cooking for her. A nursing service comes three times a day to give her her medication. Others help her with other everyday things and go for walks with her, for example. It works relatively well. Except for her moments when she lies down and just wants to die, alternating with swearing at people that she can do everything herself, that she wants to eat almost nothing, drinks little, to the point where she is almost unconscious due to lack of fluids.

Thank you for sharing, Mililea.
It looks as if you really have a great and unusual community there. People developing dementia have at best some family around; many only have the mobile nursing service for social contact. It's a dark and lonely place they enter while losing their memory.
I like how you all take care of her.

As others here have said before, the wish to live often declines enormously in dementia patients as you can observe in her refusing to drink or eat sufficiently.
If this becomes an apparent problem they end up in hospital. There they often show erratic behaviour and can't be dealt with, so they end up in a psychiatric hospital.
So keeping her well hydrated might be bothersome but could spare her some ugly experiences.
I'm seeing this endless line of dementia patients at work and it's not easy to deal with.

I really appreciate what you and your community are doing for her and it would be great if you'd go on as long as it doesn't become overwhelming. This is a clear advice to everybody involved to taking good care of themselves.
If you can help her to be able to stay at home that would be a gift worth providing, but if you should realize it's too hard to handle choose wisely.
If memory loss is accompanied with hallucinations and aggressive outbreaks it might be time to check out.
That isn't to say that all people with dementia will develop these.

 

[thorbiorn]

Thank you Millea for sharing your experience and opening the topic.

H. agreed and went to visit her relatives over the holidays and then came the first day in the nursing home.

She didn't feel well at all and had something like a panic attack. She argued with her relatives, got in a taxi and drove here home and wants nothing more to do with them.

It is not uncommon that old people say yes, and then change it to no in situations like this. My uncle did it just recently, though his brain is the most healthy part. I think he just prefers to die at home.

Is H. more connected to the people in your house, than to them? Would it have made a difference if people from your house had been with her when moving into the new place? Anyway, I think it is great you can help each other find the time to help her.

When my mother began to show symptoms of dementia, my sister signed up for a membership with a local organization, and through that we learned more about the disease. One thing we did was make observations and take notes about the development. This helped both us, the doctor and municipality to make appropriate and timely decisions. For some people it can move very fast, for others it takes much longer time. My mother has a slow developing variety. She can still recognize faces, and laugh at small jokes and play on words, but keeping track of what happened a few minutes or hours back, or the day of the week can sometimes be much more difficult. She loves her calendars, and is the only one on the floor who keeps a newspaper, but often we need to tear off an extra day, or find the one that was torn off and stick it back on. In one of her calendars she writes down who calls, and who visits her. It is a help for us and her, though she now more frequently notes down under the wrong date. This year she has received a calendar with drawings and colors, different from page to page. I wonder if it will make a difference.

A few days ago, I watched the film "The Father" with Anthony Hopkins with my husband and I really liked it.

This is almost odd. I called up my sister just now, and she of her own accord mentioned this title, which she had watched today after her son had recommended it. She also told me about and recommended another movie, Still Alice. It is mentioned along with a few others in this list of nine movies.

I hope all works out for the best

 

[Maya]

Hang on there Mililea and everyone else in similar situation
It is very hard no matter who is about. And those lessons realy teach us compassion, patience,
love and humbleness like the few.

My mother in law who passed a year ago with 94 years was also demented, but luckily only for the last 6 months of her life.
She was very strong woman, who could manage everything in life by herself - raised her kids, took care of the land, the animals, all the village life duties. Her husband was never around a lot since he worked abroad and then he died when she was 40.

Last 2 years it was hard with her cause she also couldn't accept that she could not be by herself any more - she only
reapeated that she just wants to die in her home - not in hospital, not at her childrens, and specialy not in nursing home.
She didn't want any help from whoever.
Somehow we all shared responsibilities for her, every day someone else sleeped in her house just in case,
took her food, feed her, bath,.. Few times she was in hospital (cause she threw herself down the stairs) - she tried to escape.
It was a struggle, because she was suicidal, and so stubborn, frustrated and tired of
everything cause her body 'would not listen to her anymore'. It was really heartbreaking to watch.

She was mild demented before but after falling the stairs it all worsen up.
In a few months she couldn't recognize almost any of us. Even the children.

And the most interesting part of this story is - 3 days before she passed - she took from somewhere and put on her wedding ring.
She was a widow for 54 years, never talked much about her husband and never wore her ring after he died.
I guess she was angry at him for leaving her like that. She had a tough life alone and never married again.
He died young of a heart attack.

We were all shocked - she couldn't remember her kids standing besides her but she knows about him after so many years ?!
And that she is prepared to meet him again on the other side.
We asked her what's with the ring and she only said 'I'm going....'

That last 2 days she was only sleeping, no more resstlesness, no more pain.
And funny thing is, but acctualy very sad - some of family members didn't know how to say goodbye to her.
They all used to have her for comforting others and could not accept that she is leaving now.
And I said everyone to come if/whenever they wish to hold her hand and talk to
her since she probably hears everything - to give love, forgiveness, nice memories,
respect and gratitude so she could go in peace. So we did that.
And tomorrow she left.

Although it was hard I am very much thankful for this experience.
It is kind of blessing.

Hugs to all !

 

[Mililea]

Please forgive me for not replying yet, but so much has happened since Sunday evening... I thank each and every one of you for your replies and I'm glad I shared it myself. Because like every time, I felt a little better afterwards.

First thing Monday morning, her care provider called 911 and she went to the hospital, but she seems to be doing okay. However, there is no diagnosis yet.

But this wasn't the only scary news for yesterday, at the same time an email came from another house resident... she came home on Sunday evening and her husband was lying dead in bed. He had no previous illnesses apart from a stroke a few years ago as far as we know. He would have been 55 next week.

In our house, we are all (or let's say most) really good friends too, so this has hit us all really hard here. I was useless all day yesterday.
His wife invited to say a silent goodbye to him before he was picked up by the funeral home. This I did and he was completely relaxed in his bed as if he was asleep. I have seen deceased people before, but he looked the same as always. I wished him a safe journey... It was just a terrible day yesterday.

As nice as it is to live so close to so many people, of course it also means that you are together in joy AND sorrow.
Last night we had a small prayer meeting with his wife in front of the house. We sang, cried, hugged and exchanged stories. I think it really did her good.

But now for the answers:

I would say that appreciate that person while you can, even if sometimes it’s difficult to deal with her mental state and her situation. I think even tho she may get o a point of not recognizing anyone, at least she won’t feel alone!

Yes, that's how I set out to do it. Just to support her when I can and for as long as I can. But it's like @Tauriel said, you really have to look after yourself here and ask for help when it's beyond your limits.... I know from my own experience that this limit can very easily be overlooked.... Thank you for your advice.

@Brandon thank you so much for your reply too. It sounds a lot like the direction things are going with our neighbour. She tries to cover up a lot of things. Like she realises it herself, but then makes up stories... I think there's a lot more to come. But I'm the type of person who wants to know everything that's happening and coming up. As realistically as possible, so I can assess it better. Just like you recommended too @thorbjorn

@Alejo yes, I think patience is what you need most in these cases. And I think humour can't hurt either. Before my neighbour was so bad on Sunday when she visited, we had a lot of fun and laughed together.

Many, many thanks for all your tips. It really helped me to feel that I am not alone with this problem. This disease seems to affect many, many families. I am now looking forward to seeing how she is doing when she is back from the hospital.

Big hugs to all of you I had goosebumps reading all your stories and am very grateful for sharing.

 

[loreta]

As nice as it is to live so close to so many people, of course it also means that you are together in joy AND sorrow.

I think it is so important, so vital to be able to share the sorrow, almost more than share joy.

Thank you to share your story. About the movie, “The Father”, how a fantastic actor is Hopkins, how good he is! On the same line, I suggest a book about a “mother” written by the daughter of Anne Morrow Lindbergh. A.M. Lindbergh had Alzheimer, and the book is the experience of her daughter and how she dealt with it. These sorts of books can help others to understand the world of the people who have dementia or Alzheimer, and also to understand how difficult it is for the people who take care of them. Sad stories they are that are shared in communion with others.

No More Words: A Journal of My Mother, Anne Morrow Lindbergh by Reeve Lindbergh​

 

[Echo Blue]

Alzheimers/Dementia is, in my opinion, the most horrific disease imaginable. My sister died from this disease and she was only 58.....this was two years ago. We (her sisters - and there luckily were 4 of us) and with the help of two other wonderful individuals, took care of her for 8 years. So, this means that whatever happened to her brain probably started in her late 40's. She was married, had two children, college grad, a teacher and helped with her husband's business. She was very outgoing, loving, had a wide circle of friends and had a busy life.

The type of dementia she had included aphasia (she was unable to speak coherently) and this issue was the most difficult to deal with. Somehow though,my sister never forgot who we were right until the end. What was most difficult for us as caregivers, was the constantly changing emotional issues that would occur......going from initial grief and sadness to anger and frustration and then finally a calm and accepting demeanor. Each step was a long process.

I don't know how families are able to function and care for someone with this disease. It is an all day, all night time consuming vigil. And the only way we as a family were able to function well, was that my sister was the baby of the family and two of us were retired and two of us had flexibility in their jobs. And, we (my sisters and the caregivers) networked with each other when difficult issues came up to find the best workable solution.

My heart goes out to everyone who has a loved one, friend, companion who develops this disease. Those individuals and families need lots of support. Believe me when I say there are many moments in time, when you are caring for a loved one suffering from this disease, when you just want to walk away. Luckily our family is close and we not only were there for our sister, but for each other.

 

[Harmony99]

My mother was diagnosed with dementia in October 2016 and it was very scary. It was our family first encounter with this illness. I removed her to my home to care for her. We got a caregiver to assist us as most nights as she could not sleep. It was so depressing to see my mother undergoing such dramatic change in her brain ability to properly function. I did some research and discovered the benefit of cold press coconut oil to control dementia. This turn out to be the magic bullet to slow it down.We gave her two table spoon each day and the result has been amazing.
I made a bold decision going against the opinions of my other siblings to stop all medication for dementia as the side effect was surprisingly Alzheimer's.
I also discontinue giving her high blood pressure and diabetes medication. All these decision were made one month after she was diagnosed. I currently have no regrets for making those decisions as mother is still alive today at 89 years. She was return to her home after seven mpnths and is been look after by a caregiver. She seem now to be entering the final stage of this illness as she can no longer control her bowel movements but all in all she has aged well with this disease.

Dementia is classified as type 3 diabetes so we all need to be cognizant of this fact. It will accelerate when a diabetic patient is lonely and depressed.

 

[Gwenllian]

Today she was at our place for dinner and was really looking forward to it (although she had practically forgotten about it within an hour). Then, as she sat at the table and ate a bite or two, she just threw up for some unknown reason. I quickly managed to get her bucket. She was just a mess and wanted to go home to bed. Which I can well understand. I then took her back to her flat and she apologised a thousand times. I hugged her goodbye and she gave me a kiss on the cheek. It was an emotional moment somehow.

A professional who works in a care home just told me that people with dementia won't inform others when they are not feeling well. That means they have their meal and then will start vomiting if they have some kind of stomach bug, so others won't see it coming. I also heard that the norovirus has been going around (also in care homes) and apparently, it is even more contagious than the Rona, and includes vomiting.

What does your house-mate still like or do, Mililea? Does she still listen to music (music is good for the brain for instance)? Is she still involved in preparing dinner (can she do some jobs like peeling the potatoes) and so on. I often have to think of Jordan Peterson who said that we have to make sure that we don't do anything for people in a care home for instance if they can still do it themselves. That means that I sometimes tell my mother no. It's very easy to see people with dementia as helpless, incapable human beings (I am not saying you do, it's a general remark). They are in need of extra assistance or some explaining, certainly, but can still go shopping or for a walk with someone else or help with dinner.

What I have been doing with my mother is asking her about her travels, the books she has read, the friends she still sees and so on. She starts to forget their names, so I started reciting their names and then she could remember a few names on her own. So, if your friend is not upset or frantic you could play some games with her, just for fun with no anticipation, although it will be good for her! My mother has taken up painting in her care home and makes really nice artwork. So does her boy-friend. They all watch movies together, which my mother really enjoys.

I think the most important thing is to make the person who is going through this as comfortable as one can. Make them laugh, crack jokes, pretend you are the one who is forgetful etc. I think there is still lots you could do, but it depends on her state. Take care, Mililea.

We were all shocked - she couldn't remember her kids standing besides her but she knows about him after so many years ?!
And that she is prepared to meet him again on the other side.
We asked her what's with the ring and she only said 'I'm going....'

I can't remember whether I read this on SOTT or here on the forum, but apparently some people with serious brain issues can function normally, just before passing, even if they have never been able to do so. The theory being that the mind/brain is non-local, at least that is how I remember it. Perhaps your grand-mother stopped being angry with your grand-father when she somehow knew that he was waiting for her, hence the wedding-ring?