Alzheimer's. My sister was just moved into a nursing home

G

grannyjo

Member
The time finally came when my 84 year sister had to moved into a nursing home, because her Alzheimer's had become so advanced that neither her husband nor my niece, could care for her any more.

It has been a traumatic experience for all of them. My sister is disorientated - a bit aggressive, quite tearful. My 86 year old brother-in-law law feels guilty, as does my niece.

We all know that she is in a better place, for her, at this time.

She had frequently refused to be bathed, would throw things in the bin, if she couldn't think where they should go. It could be clothing, cutlery or crockery

She was getting up during the night and dressing herself and saying things like she needed to go to work, or demanding a meal.

They have been encouraged to visit her on a daily basis. That has been an emotional roller coaster for them. She cries when she sees them, she cries when they leave. It is such an insidious disease.
 

That is so sad.....and so traumatic for everybody involved. Your sister, probably won't remember; it is the family that feels so guilty. No need, but that is easy to say.
 
Dementia is a progressive condition and anger is one of the phases, but it will pass.

It is important to get good 24 hour care and there comes a time when this can only be provided by specialists.
Your brother in law and the rest of the family can still care for her, just not in the home.

The crying, like that of a small child, will not last long after people leave. I found with my mother that when I left, rather than say 'Goodbye' it was better to say something like 'It's getting late and I need to pop down to the shops for some groceries' or 'I must go and get the washing off the line'. She always agreed that that was important and saw me away quite happily. I would also reassure her that I would come back in a day or two for another visit.

Grannyjo, I've been down this road several times and I'd be happy to have a conversation with you anytime you would want.
 

That's very sad indeed Grannyjo, I wish the best for your sister and your family in this tough time. My aunt had to be placed into a nursing home for AD also, but I was too young to remember how badly she was affected by the disease.

It's natural for family members who are close to feel some guilt, but they made the right choice for the safety of your dear sister. I agree that they should visit her often, she'll appreciate the visits and it's wise to go their often to make sure she is being properly cared for there. Even the most reputable homes can have workers that are abusive and careless. Please take care of yourself too, sending warm thoughts to your family. :rose:
 
I'm so sorry Grannyjo. I have a good friend who has her mom in a home for Alzheimer and she has it pretty advanced and one of my friends, my age, has it and she is still at home with her son and daughter-in-law and their boy, but she will have to go to a home soon. She will get up and wander away, they can't leave her alone for an instance.

Yes it is really a sad situation, I'm sorry for your sister and the rest of the family. Hopefully your sister will settle in just fine.
 
Thanks Warrigal - It has been a while since I was able to have a conversation with my sister. She would phone me, I would listen to the same conversation we had a couple of days before. Now, although she still recognizes my name, she doesn't really know who I am - she has called me her mother. I am about 700 k from where she lives and I am sad that I am not able to be with her now. I am concerned that it is a family failing. I have had two sisters, and my mother go down that path previously. I just hope that my activities, my being out into the community will help me stave off the dreadful disease that it is.
 
It's an awful way to end one's life. I lived through it with my mother, who died in 1982, after many years of continuing deterioration. She lived alone for a while after my father died, then moved into a group home, was asked to leave after setting fire to the kitchen stove not once but twice, moved in with me and my family for about a year, and finally into a nursing home when it was clear that she needed more care than any of us could give her. She seemed happy enough there, probably because she was pretty much "out of it" by then and didn't realize too much. If the home is a good one and your sister is being reasonably well cared for, that's probably all you can do, Grannyjo. Visit her as often as possible, which is probably the best thing you can do for her and yourself.
 
I'm so sorry about your sister GJ, it's becoming more familiar to most families now but that doesn't ease the pain of it.
I'm doing phone duty with yet another elderly relative in the early stages of Alzheimers. It's just 6 months since the previous one got to the stage of no longer knowing who she was talking to, she thought I was my mother, and the calls have stopped, and now here I go with it all again.

This one is still well aware of her surroundings, and her future deterioration prospects and is just plain scared, and surprisingly, lonely.
She has a husband, 2 daughters and a clutch of grown and growing grandkids and yet asked would I please talk to her about it as none of them would let her discuss it all. They just shut her down as though it will go away if it isn't mentioned and she finds that devastating.
She feels they are pushing her away.

I see it as just fear of losing her on their part as I know they all love her dearly. But they are loving the old 'her' and distancing themselves from who she is changing into, and what she is going through, just when she needs their unconditional support most.

She calls me when her husband goes out as he takes the phone from her otherwise and doesn't like her talking to anyone about the diagnosis. He 'laughs' it off. He's a kind and intelligent man but is just not handling this well at all. For either of them.

So I listen to the same story 3 times in 15 minutes. We don't pretend that there's nothing wrong with her repeating herself and getting 'ditzy' we just talk about it as some of the strange things that Alzheimers does to people.
I pull no punches with her when she talks about the silly things she's doing, just point out that it's what happens as the disease progresses and she seems relieved to hear that view of it, and can still see the funny side of it, if that's what it could be called. May her sense of humour be the last thing to go.

We talk about the rels who have been dead for 50 years as though we saw them yesterday and we can still laugh together about the whole sad and silly thing life has been for us all. I'm the only one left who remembers the same people she does from that shared past now so I draw the duty. Gladly.

She always ends by thanking me for letting her talk about it honestly and facing it with her. Least I can do, nothing else I can offer her unfortunately. I'm missing the old 'her' too, when she goes off at a tangent, but as long as that part of her that remembers me keeps calling I'll keep taking the calls.

Not all sufferers seem to go exactly the same track, neither this one nor the other went through 'angry.' They seemed more annoyed than angry but then I'm only hearing them, not living with them so it may not show.

Perhaps 'angry' is frustration generated, and perhaps family humouring and patronizing them is exacerbating that? Maybe a bit of honest down to earth discussion and acceptance of what is happening, whenever that's possible, would be a better way to handle it?

Thankfully my Mum was sharp as a tack (or scalpel sometimes) until very near the end so haven't had hands on experience with Alz sufferers, just a lot of very long and convoluted conversations.

I'm sorry those calls have stopped for you Jo, and a shame you're so far away, that was my regret too, that I couldn't go and see them. But then that may have been a blessing too. They'll always be the 'originals' to me now in my memories if you know what I mean.
 
I know all too well what you're going through, GrannyJo, and it's a nightmare. Those who have it don't know. It's the family who suffers the loss. My heart goes out to you in the biggest way and I'm hoping you can get yourself prepared emotionally for more. That's all I can say without making you feel worse, but you have to be strong. It's a gut wrenching disease and there are so few of us who have not been touched by this disease in some way. ((HUGS))
 
Di, you are spot on with the importance of conversations. The opportunity to talk is very important. I lived with my MIL when we were first married and later she came to live opposite us where we could keep close contact as she aged. I knew most of her stories and the names of the people who were important to her and whenever I visited her in the dementia hostel we would share a pot of tea and I'd prompt her with a "do you remember ...?" question, mentioning something from her past. She would then reminisce at length and was very happy while doing so.

I think people with dementia realise what is happening to them, at least in the early stages. The anger stems from grieving for loss of self and from frustration. Also, that part of the brain that inhibits antisocial behaviour may cease to function and childlike behaviour, good and bad, is very close to the surface. The important thing to remember is that underneath whatever symptoms may be manifest, the person we have always loved in still there and still needs our love. Love is not a feeling - it is a decision, and the dementia sufferer needs us to decide to be patient and to accompany them gently as the condition progresses. When we accept the situation it is a lot easier for the patient too.
 
We should do a 'hat's off' to Hazel Hawke and her kids, who had the guts and good intent to go public with her slow decline into Alzheimers.
Reeespect Hazel for putting a human face to a disease that people are having trouble coming to grips with.

I think there are many Hazel's out there who just need a bit of honest conversation about their plight to retain their dignity. Patronizing them robs them of that I feel and they're already being robbed of enough. Love and support are plentiful, but acceptance and open discussion with them among families seems to be still a strumbling block.

Of course it's only possible in the earlier stages, but that's the time when they still realise the enormity of losing it all, that's when they need to be told that we understand, and know, that it's not their fault, and thats it's not insanity, it's a brain disease, and that we know they're not stupid. They're not children, despite their behaviour and no doubt resent being treated like one.

Helping them in retaining their dignity for as long as possible, by not indulging in patronising pretence, is really the most respectful, and only, kind of goodbye we can give them that they will still recognize. Love is for later.
 
Our next door neighbour was diagnosed with Alzheimers a month or so ago. Her husband came in to tell us and he was pretty upset as he's not a well man either. He said that she'd been getting really forgetful over the past 6 months so they saw the doctor and had tests done to confirm it, but he asked us not let on that we know as she wants it that way.

He wanted one of us to witness a few legal papers re power of attorney for his daughters, but when I went into their home to do so I had to pretend all was normal. She didn't, at the time, even want her close friends to know. I'm sure they do now, well I would hope so anyway.

She's had to give up her driving licence, and he told us they're going to sell her little car which she ran around in all the time. We'd like to put in an offer as it is a well looked after little car but can't say anything in front of her as we're not supposed to know anything.

We've only known them for 3 years since they moved in and she doesn't seem much different to me but then I don't see her like he does. I always thought she was very vague, and had always been that way, so maybe it started a lot earlier than her hubby realised and it took someone who didn't know her well, like me, to notice it.

She's only in the early stages but who knows how fast this disease can progress. She is being treated with some medication, I don't know what, so hopefully it will slow it down, but we all know they can't stop it.

Until she actually tells me I'll just carry on as usual.

So very sad.

 
Yes, that's all you can do Cas, we're all different and if that's her way of coping then so be it, go along with it. If she wants to talk about it she will. But as she hasn't known you long it's unlikely she would confide. I've known my 2 all of my life, big difference.

If you want the car mention in passing that you're looking for one and let them offer it to you. He already knows what's going on, she doesn't have to know that you do. It can be put down to a lucky chance.


 
When you visit try to remember them as they were prior to the illness.

The really difficult part is when they reach the stage where you become a stranger.

It is almost impossible to care for a loved one at home and finding a good place where they can be cared for within a safe environment can be a major headache.
 
Bringing up old stories is a great one that was mentioned, also photographs. They LOVE to go through family pix. I could keep Mom entertained for hours doing that. It was great for car rides where she usually became restless. Good luck and our thoughts and best wishes are with you.
 
Diwundrin said:
Yes, that's all you can do Cas, we're all different and if that's her way of coping then so be it, go along with it. If she wants to talk about it she will. But as she hasn't known you long it's unlikely she would confide. I've known my 2 all of my life, big difference.

If you want the car mention in passing that you're looking for one and let them offer it to you. He already knows what's going on, she doesn't have to know that you do. It can be put down to a lucky chance.
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Yes Di, you're pretty right in what you say about her not confiding in me.

We've mentioned when chatting with her hubby, before all this happened, that we'd like to get an automatic car so that I can drive. I refuse to drive our manual. Don't really like to bring the subject up again but may get a chance if I get to talk to him on his own.
 
My father had it and it was heart breaking. He did end up in a nursing home as he was big man (6'5") and none of us could do much to help physically. The nurse told us that he was also depressed but they didn't want to give him any medication for that as it might alter the drugs for Alzheimers. In the end, the depression was just too hard to deal with so we told them to medicate for that. I would rather see him happy and not know who I was than the other way around.

He died about 6 years ago and I believe he willed himself to go - he just didn't want to live anymore. Do what you can for your sister and don't feel guilty for the things you can't.

Hugs coming your way.....
 
Yesterday was the first day that my sister didn't cry when my brother-in-law and niece arrived, and she didn't cry when they left. I think she may be settling into the nursing home environment. I asked my niece if the nursing home had "resident or visiting" pets, as therapy. Apparently they don't. I looked up the nursing homes in my area. then, most of them have the resident pets - either a dog or a cat, those who don't have the resident pets, have the visiting pets. I know it is extra work for the workers, but so many older people relate well to animals that I feel it is almost a necessity.
 
grannyjo said:
Yesterday was the first day that my sister didn't cry when my brother-in-law and niece arrived, and she didn't cry when they left. I think she may be settling into the nursing home environment. I asked my niece if the nursing home had "resident or visiting" pets, as therapy. Apparently they don't. I looked up the nursing homes in my area. then, most of them have the resident pets - either a dog or a cat, those who don't have the resident pets, have the visiting pets. I know it is extra work for the workers, but so many older people relate well to animals that I feel it is almost a necessity.
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Grannjo, you are so right about this. It has been proven that animals visiting children in hospitals and patients in nursing homes relieve stress and elicit responses not usually seen in them. I have a friend with three little poodles, two of whom she has gotten certified for the pet therapy program. She belongs to a chapter that sets up visits for nursing homes, hospitals and would you believe colleges for students during mid term exams. Yes, apparently the students benefit a lot from the stress relief of petting and interacting with the dogs, and is highly popular with the students.

Maybe you could be proactive in helping to arrange pet therapy visits. If you like I could talk to my friend and see how you might go about initiating this and you could talk to the nursing home about adding this to their social time. If you went armed with some information, they might be open to the program. I don't know much about the protocol of this but would be happy to help find out.

The little white poodle on the top and the black and white one on the left are the therapy certified ones. The one on the right does agility, so she hasn't taken the time to certify him yet. Who wouldn't want to pet them.

Michelle Chloe Robbie.jpg
 
Pets make a tremendous difference in nursing/aged care environments. The one in Singleton had a flock of around 8 sheep and 2 alpacas and 2 rickety ancient ponies that had access right up to the balconies where the oldies could feed them bread and watch them. Most places of course don't have the acreage for that, but it was a real buzz for the residents. Many of them had lived their lives on farms and the livestock comforted them probably more than domestic pets would have.
It was a great arrangement as the original manager was a part time farmer and built the shelters and fencing and stocked it with older, quieter animals from his property. When he moved on a retired farmer who lived nearby volunteered to oversee their care. The home paid for the feed and costs and he provided the hands on work with them.
An old shearer did the sheep for free and the local dog clipping lady did the Alpacas. One year she couldn't make time for both and sent an amateur she was training, and that poor Alpaca was the laugh of the town they made such a botch of the shearing. Poor thing must have wondered why we all laughing at it. It looked like a tall Porcupine.

There was also a cat that always seemed to be asleep in the car park but would wander around at night to visit some rooms as the oldies were being settled in. The staff said it calmed them as they'd watch the cat instead of fussing about being put to bed. They threw the poor cat back outside before lock up though, it didn't have the run of the place. It had it's own little 'house' but no one ever saw it go in there. It was one tough looking cat and probably slept rough. Nobody owned it.

Relatives sometimes bought old pet dogs in to visit former owners and that was always a tear jerker. They were restricted to the 'lounge' or outdoor areas and weren't official 'visiting/therapy' dogs which is also a great idea in some places.

Glad your sister is settling down Jo, it takes a while, did with my Mum, I'd find her 'packing' to come home with me, and she didn't have dementia at all. But suddenly she found she liked the card games etc and having more than one person attending her needs and stopped mentioning 'getting out.' Look at it as half the battle won.
 
Dementia can be such a painful experience for all involved.
 

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