Alzheimers and the Elderly

[Petra]

What experiences have you had with this? What advice do you have?


My old friend Lyn, who I've spoken of here before, is a single, never married 79 year old with no children, and lives on her own.

Her health has always been good, although alzheimers has been creeping in over the last couple of years or so.

As she lives alone, I make sure that I try to visit with her most days - though not every day - and I take her on outings and make sure her bills are paid and that when she sees the doctor etc, I'm there to be her memory. Without me, she wouldn't have a clue about why she is at the doctors after getting there, or what the doctor's prognosis and prescription is after the fact.

She can be lucid at times, and her long term memory is good. But she can also be muddled and occasionally panicked to varying degrees about such things as where her chequebook is, or where her car is. (We sold her car after she was deemed incapable of having a drivers license a few months ago - sometimes she knows this, sometimes she doesn't).

Last Monday, I called her to tell her I would be around after I'd done my housework. She sounded in a state of shock, and told me that she was just running herself a bath, but that she had intended to call me because she was bleeding. I asked her where she was bleeding from, and she said "down below", thinking she was having menstruation visited upon her again after all these years and that she didn't have a pad or anything to stop the flow. Naturally, I told her I'd be right there.

When I got there, I found blood dripped from her bed to the loo to the bathroom, all over the carpet. She had already changed her linen and soaked her nightie and knickers, and run herself a bath. She had done all this before I'd called her, and who knows when she would've called me about it (or, for that matter, called a doctor, an ambulance, or pressed the button on the emergency necklace she never wears.

Lyn is a wanderer, always taking about 3 walks on a familiar route every day, after bathing and applying her makeup, getting dressed etc. She's walked for exercise ever since I've known her (and I've known her since I was about 5 years old). So she's pretty fit physically - more so than many her age - but her mind is going. Yet she prides herself on her independence, and it's so hard watching that independence go.

Anyway, I got her up to the emergency room, which was hectic, and without me there she wouldn't have had a clue why she was there. She was admitted late in the day to the surgical ward in case she needed a blood transfusion (which she didn't as the bleeding - which was coming from her colon or bowel - slowed to a stop). I've spent a good part of every day with her in the hospital, and have also been to her house to arrange for carpet cleaners, getting her washing machine fixed (I didn't even know it was broken, and I would've thought that the home help she gets for an hour or so a week would've noticed, and told me), and generally having a good clean up of the place.

Anyway, she was released from hospital today (Friday), but I didn't take her home from the hospital - I booked her into a really lovely rest home instead, and told her a wee lie about why she was there. (And it really is a lovely place - I spent the best part of 2 days going around all the local homes and interviewing them before choosing this one). Anyhoo, I told her that she had been officially referred and sent to this one by the doctors at the hospital because she wasn't sick enough to stay in the ward, but she wasn't well enough to go home, and so this was the prescibed transition place between hospital and home. In the meantime, I'm sorting her out for a proper and full assessment of where's she at, mentally and physically.

I've booked her in for a week, and I've reassured her that it's only for a week, but I'm not so sure. She has to have a colonoscopy in about 2 to 3 weeks as an outpatient - they'll send me the paperwork and appointment details - and I'm kind of hoping that I can keep up charades until after that procedure, at least. It means warping time a bit for her, so that she thinks the 2 to 3 weeks are really only just the one week. I've taken her her tv and radio for her room there, so she will be comfortable and have some familiarity, and of course I shall continue to visit her and take her on outings. But, I still feel like such a heel - such a big, bad meanie. But I'm worried for her wellbeing at home on her own, especially overnight and during the hours of the day that I can't be there for her.

I try to joke with her and make her laugh and calm her when she's nervous and be patient when she's confused - all things I'm pretty good at, if you don't mind me blowing my own horn here - and she trusts me completely.

I had always thought that putting Lyn in a home would be like a death sentence to her; that it would facilitate rapid deterioration; and that she is best off in her own home and familiar surroundings, with enough support (she already gets one midday meal delivered through elderly support services 5 days a week, and the aforementioned weekly cleaning lady) - but I really have no prior experience of such things, and I'm now doubting myself about this. Maybe she would be better off in more permanent residential care? Even if it were against her own wishes.

I don't know.

[Hugo Holbling]

All you can do is what you think best, Petra. I'm sure Lyn will trust your decision and would say as much if she understood what was going on, not least because you've been there for her for so long. I know that if i get Alzheimer's when i'm older then i hope i have someone like you looking out for me.

[Pendaric]

I don't know what the law is in New Zealand, but in the UK it can be hellish difficult to put somebody in a home if they object to it, even if it is clearly for their own benefit.

My grandmother was in a similar state to your friend last year, and because she was fiercely independent and resistant to going in a home the doctors and social workers would not commit her, even after a spate of incidents such as you describe and with all the family on board. We finally got agreement from the social services for her to be put in a home only when she was taken in to hospital because of various accumulated ailments she wasn't telling us or the doctor about, although she died in hospital and never actually went to the home.

You say that the lady is a friend rather than a relative, so I would have thought it would be even more difficult if not impossible for you to force the issue. As said, I don't know what the law is in New Zealand, but here a home is the last resort after various methods of support at home have been tried - it's a lot more expensive for the state to pay for someone in a home than it is to provide meals on wheels and call bys.

You have all my sympathies in this situation. It can be massively painful for family and friends to watch this happening - been there, done that.

You can and will feel like an absolute bastard if you have to take decisions on the person's behalf that you know they don't want, even though they are the right decisions for them. You have to be strong and know that you are making the right choices for the right reasons, even if it's not appreciated and earns you nothing but pain.

[Dingfod]

Uncle Jack, age 93, related only by marriage, was lucid and entertaining to converse with at our family reunion last October. A couple months ago, his wife, Aunt Isabel, 90, had to go into the hospital in Portland for minor surgery. Their daughter offered to drive Jack to their home in McMinneville, they were worried about him getting lost or something. Jack was insulted, insisted on driving himself home. Jack's car was found a couple days late off in a ditch up in the mountains east of Portland. Jack was found the next day out in the wilderness, wandering lost, all bruised and scratched up. He had no idea where he was. He's recovered now, but pretty well gone mentally. It seemed to me it came on so suddenly. Obviously, immediate family noticed the onset beforehand, that's why they were concerned.

To echo Hugo, I too hope that I have someone like lunapetrachick watching out for me when I get old.

[Pinecone]

If it's any help, I too am very independent and would love to stay in my little cottage until the end (a painless easy one of course). But, have told anyone that would try to care for me if I got alz, to put me in a care place and don't look back! I want to BE the independent old crow in the woods, and if I'm not, quite frankly I'm not 'me' anymore and they shouldn't have to watch what I myself wouldn't want to watch... The slow end of 'me'.
So I think you are doing very very good by her! Hugs!!

[yguy]

Originally Posted by Petra

But, I still feel like such a heel - such a big, bad meanie.

I would suggest you let that feeling go to Hell where it belongs. It's sweet that you want to help and all, but your resources are limited. Caring for someone like that will become increasingly draining over time; and you have a daughter to attend to, who has to come first.

[lisarea]

My grandfather had Alzheimers. He wanted to continue living on his own, but things got pretty bad. He'd get confused, get lost, and started to forget things. They were worried he'd burn his house down someday, and my aunt had to 'steal' his car to keep him from driving. So eventually it was decided he'd come out to live with us.

But even with both of my parents and four teenagers helping look after him, it was hard. He'd do things in the middle of the night, including calling 911 and telling them he'd been kidnapped. In his lucid moments, he'd just feel guilty for putting us through it. So my dad took him back to Detroit and found him a retirement home there. And he had a great time. There were a bunch of little old German men there, so they'd take them all out for a once a week "Beer Bust" at the pub. They had dances and parties and got to socialize every day. It turned out to be probably the best thing for him, despite everyone's expectations to the contrary.

Don't feel bad about having to use a little deception to help her along. It really sounds like you're doing the right thing.

[maddog]

But, have told anyone that would try to care for me if I got alz, to put me in a care place and don't look back!

Amen!

#1259

[vremya]

Wow, this is a weird coincidence. I'm working on some research for one of my profs on what to do when an older person is unable to make their own medical decisions and they need medical care, and they have no friends or family. Lyn is really fortunate to have someone like you watching her back!

Wait and see how things play out - it doesn't make too much sense to worry about stuff before you have to. So long as she knows she's in a place where she can get some rest and the care she needs, that's fine for now.

And don't forget to take care of yourself! It's really easy to forget yourself when you're looking after someone else.

[Plant Woman]

I echo take care of yourself too. This is a hard situation and unfortunately you are the one that has to make the decisions. Keep doing what you think is best for her, that is all you can do.

[mickthinks]

Hello Petra!

You have to make some decisions on your friend's behalf and naturally you don't want to make any mistakes. But that is an unrealistic standard for anyone to set themselves. Recognise that you will make some mistakes and Lyn will suffer as a consequence. You aren't taking on this responsibility because you are perfect, but because you are better placed now than anyone else, including Lyn, to decide what's best. All you can demand of yourself is to know that you did the best you could.

I think the big danger is to place too much emphasis on the pain and guilt you would feel, and the blame you might get from others, if anything bad happened to Lyn and you weren't there to prevent it. Sometimes the willingness to risk that pain is the best gift we can give our loved ones, because it is the price of their dignity and freedom. Her long-term survival may not be as important to her as her continuing dignity and freedom.

The story I have to tell is that of my old mathematics teacher, who was kept on at the school long after retirement age, because the teaching and nurturing of children and the fellowship of the staff room was his whole life, and because he was still good at it. I reckon that it was the year I spent in his form that developed in me the enthusiasm for mathematics that took me on to university. Early in the following year, his new class started noticing that he was making more and more frequent mistakes. One day he didn't turn up to take the class. He was missing for about three days and then they found his body floating in the canal. The inquest decided it was 'accidental' but it was generally assumed that he'd made it happen.

Those who were closest to him probably felt dreadful that they'd not been able to prevent him doing 'something silly'. My feeling is that the only way to prevent it would have been to take control of his actions away from him, and that would have been worse than what actually happened.

The cases are very different, and I am not saying you should leave your friend to fend for herself. The point of the story is just to illustrate the difference between 'doing it for her' and 'doing it to avoid the risk to yourself of feeling, or being made by others to feel, that you could have prevented something'.

It's a tough call. Talk to her about your fears, and let her know your needs. Then take the risks with her that she needs to take.

You're both in my thoughts.

Mick

[Godwhacker]

Your friend is very lucky to have you. Most of what I do involves trying to take care of those with dementia. Its very hard work emotionally, and my hat is off to you. If there were more people like you around, the safety of our older adults would be so much better!

Im going to say some things that you don't want to hear (or, in this case, read):

First, a person with dementia is going to need a nursing home level of care at some point in the disease process (unless they die of something else first).

Second, I have personally witnessed too many times where a demented person has seriously injured themselves or someone else or died due to remaining in a home environment. We usually don't think of our homes are being dangerous places, but they can to a demented person. Some examples: I have had several patients burn themselves severely when they cranked up the hot water and forgot to add cold. Numerous fires due to various causes (leaving things on the stove, leaving the gas on, smoking). Many many examples of caregivers who are attacked by the demented person when the demented person forgets who they are and thinks that they are a thief or attacker. I have seen several husbands attack their wives (in a few cases, severely) who they have been married to for over 50 years because they did not recall who they were! Probably the most dangerous thing is the wandering. In the area in which I live, at least once every few monts, once per month in the winter, an older demented person wanders off, only to be found dead after getting lost, exposure to cold, etc. Lastly, many demented patients died by not taking vital medications or neglecting themselves (dementia can lead to people forgetting to eat, sleep, bathe, etc. - I often have residents ask me "whats for dinner?" five minutes after they just ate it!).

Third, thus, based on the above, sometimes a home is a safer place. Granted, they might not be happier, but they will be alive. What I often see is great resistance on the part of the patient and caregivers when a resident first comes to the nursing home. However, in time, once the resident starts to socialize and get into the activities, they end up being happier than before they came in. This is certainly not true of all residents, but many.

Fourth, most (certainly not all) nursing homes are not nearly as awful as people think, and there is a large movement afoot to make them more home like and less hospital like (e.g., "The Eden Alternative"). Before I get jumped on, I am not saying that all nursing homes are great, or even good, but many are, and many are trying to get rid of the negative view of nursing homes by the public.

A good home should have a walking program, so your friend can continue to enjoy her walks. They should allow her to make trips with friends and others (like you!). A good nursing home will aim to try to give a resident the maximum amount of freedom and quality of life possible within a reasonably safe environment.

I don't know about down under, but I know in the U.S. we have some resources, such as the local branch of the Alzheimer's Association, or a Azheimer's Research Center (ARC) at a local university, etc. I would suspect that there has to be some kind of community support or some project or program at a local university that could give you some advice, guidance and support. I'm sorry I don't know much about New Zealand's social services to give you more specific advice. The best advice I can give is to not go at this alone, if you can help it. Try to seek out some kind of support, for both your friend and for you.

...and not matter what happens, your friend is lucky to have you and your help! Without you, who would be there for her?

[Petra]

Thanks for your replies, everyone. And sorry I haven't responded earlier, but I've been flat out and feeling a tad exhausted.

I've moved all Lyn's stuff into her garage so I can more thoroughly clean the place. Lyn was always very smart and proud and it's a surprise to find things being as dirty as they are. The kitchen alone is a nightmare! All the visible surfaces all looked clean, if a bit cluttered sometimes with old mags and newspapers, but when you start really poking around, the true biohazards begin to emerge.

Anyway, you've all given me much to think about - thank you - and I will call a family meeting when mum gets back from France the week after next. (Lyn gave us power of attorney some time ago, so we all need to discuss everything regarding what is in Lyn's best interests).


Thanks, guys.

[Petra]

We have a solution, and Mum has agreed.

She called me this morning from France to see how Lyn was, and so I took the opportunity to discuss with her an idea that me'n'Heidi had.

Heidi lives in the old family home, which she rents from Mum. (I lived there before I moved to Hamilton). A friend of Mum's rents the adjoining "granny flat", which is just lovely and easy to maintain. The friend that lives there is young, single and healthy, so we're going to give him about 6 weeks notice to vacate. Then Lyn can live in the granny flat, I will live in the attached house, and Heidi will move into Lyn's old place. As the house and adjoining flat are just around the corner from Lyn's place, Lyn will still be able to go on walks on her familiar route, and if she forgets she's moved and goes back to her old place, she will find someone there she knows. And I will be on hand 24/7 as I'm no more than a few metres away. The property is fenced and safe, and is sunny and easy care. Lyn has been familiar with the place since it was first built some 40 years ago, so the change should be quite easy for her. To give me a break from time to time, I can place her in day care one or two days a week, and when we go away she can stay a few days at a time in the rest home she is currently in.

She doesn't mind the rest home, but is always asking me when she is due to leave it and doesn't want to be there permanently at this stage. And as has been previously mentioned by baldbantam (and the staff at the home), if she doesn't want to be there indefinitely, we can't make her stay. For that we would need a court order to commit her, and we aren't prepared to do that. Certainly not yet, anyway.

All we have to do now is tell Andre - the current tenant in the flat - and as he also knows Lyn, I'm sure he'll understand.

I spoke to Lyn about it today - although I'm sure she has already forgotten that, as she doesn't even remember being in hospital last week - and although she wanted to return to her own place, I managed to convince her of why she must not live alone, but close to me - and after reminding her of what she'd just been through, she realised that the plan was a good one and agreed to it.

So all's well that end's well.

For now.

Hopefully.

[Petra]

Bloody hell.

How quickly does this disease take hold? How rapid is the decline usually?


On Sunday night, Lyn came bursting into the lounge all panicked. When she saw me lying on the floor, she asked me why I was there (as in the house, not on the floor) and then said, "thank goodness you're here! I've just realised it's Monday tomorrow and I don't know where my work clothes are!"

I proceeded to tell her that she had been retired for a long time now, and she asked me if I was sure about that. She thought she had to go to work at the hotel she had worked at for years, but had retired from almost 20 years ago. She couldn't remember that she had spent almost a decade since then living and working part time at the farm, finally retiring from there about 3 - 4 years ago.

Everyday I remind her of what's happening - that we will be moving to Compton Street, and Heidi will be moving into her place and that Heidi is fixing her place. Everyday she starts off a bit confused, but in fairly good spirits and grateful as hell that we are looking out for her and that the arrangements as planned meet her approval and that she understands that it is for the best. But tonight she changed tack. She became really upset that she no longer has a car - she can't remember selling it back in about May or something - and she can't remember not being allowed to drive. She can't remember Compton Street, an address she's known very well for years, and she is adamant that she is to return to her own place because she does not feel that she is ready to live with a caregiver yet and then when she asked about how much we would have to pay to live in the new house, she got alarmed by my reply that she would not pay anything! She asked who owned the property (my mother) and who said there would be no rent (my mother again). When I said "my mother" she said "and who is your mother?" !!! When I told her, she suddenly went quiet and knocked on her head exasperated with a "how could I forget that!" And then we started over - "what's happening to my place, why can't I live there, I feel that I can still live on my own, who owns Compton Street, where is it, what rent must be paid, who said, why wasn't I consulted, I'm not ready I want to go home, who lives there now, why can't I go home tomorrow, who owns Compton Street, what rent must we pay, who is giving us this house for free (I'll have to pay rent, but Lyn won't), I thought all this time I was going back to my place, why wasn't I consulted, etc, etc". This went on for a couple of hours, and after exhausting her, I managed to calm her down and take her mind off it all by diverting her attention to something on tv. Half an hour later, you'd think it never happened, and she later went to bed peacefully and in a fairly relaxed mood.

And now I can't sleep. My mind is churning. The hardest thing was that she didn't know (at that particular time) who my mother was. My mother has only been her best friend for some 40 years. It hit me like a ton of bricks. Fuck that was sad.

I'm certain that things will be easier (I hope) when we get to Compton Street, because she knows it so well and will feel at home there. It's just extra difficult where we are now because it isn't a familiar suburb to her and our house at the moment is a bit too small for the 3 of us, and she doesn't have her own things around her.

God, I wish Andre would hurry up and find a place so we can move in there. He's been spoiled there, because it's such a lovely apartment and as a long time acquaintance of my mothers he's had cheap rent there, so he's really dragging it out!

Oh dear. I'm tired and I want to cry.

[vremya]

From what I've seen, which isn't authoritative by any means, people with Alzheimer's can have all kinds of disease progression. People have good days and bad days. Lyn forgot who your mom is today, but she may remember later. That's one of the things that makes Alzheimer's so nerve wracking. I think once she's settled in a place that's familiar to her, things will be better.

Hang in there - you're so good to care for her like this! Take each day as it comes. And make sure you take care of yourself too.

[livius drusus]

That's really rough, Pets. I'm sorry.

I understand mornings/afternoons are often better than evenings/nights for Alzheimer patients. It's called "sundowning", an agitated state they get into after the sun goes down. The Alzheimer's Association of Los Angeles: Sundowning

[Petra]

Thanks for the link, liv.

Lyn doesn't nap during the day, and she remains fairly active as she loves her walks and I take her on outings all the time to make sure she gets outdoors and does different things. We'll walk along the lakefront, or in the forest, or visit gardens and whathaveyou. But she definitely shadows me, and I can see that I need to turn house lights on earlier, and perhaps more of them to make sure she has adequate lighting. I will also find things for her to help me with in the evenings. I can see how that could help, as she likes to feel busy.

Thanks again for the link, liv. Very helpful.

[Petra]

Thanks, vremya. I know she will know exactly who mum is come the morning, but it really concerned me tonight. It was the first time - to my knowledge - that she'd forgotten my mother. Scary.

We just have to get through the next week or three, and then everything will settle down, I'm sure.

I never did use a gift voucher for the Polynesian Spa that my sister gave me for my birthday back in May. I will be using at the very first opportunity after the big move. Thank goodness I saved it up - I'll need it even more in about a month's time!

[Petra]

Billy Collins - Forgetfulness.

Seemed kinda apropos.

[JoeP]

Bloody hell indeed. No wonder you want to cry.

[Watser?]

Wow, that sucks. I have no experience with this at all, my parents (and my grandparents too) were still doing very well mentally when they died. But I heard of this kind of thing before.

Sorry you have to go through all this Petra

[Petra]

Liv, I know I've thanked you half a dozen times already, but that link you provided was just great! So thanks again, for the somethingth time.

The first night, she started up again, but I was able to nip it in the bud by getting her to help me with dinner and dishes. Something that up until this point I've always said "no, it's okay, Lyn - just relax" whenever she's asked if there's anything she can help me with. Her help is more of a hindrance than anything, but I'm going back to when Zoe was a wee child asking to help me and applying the same philosophy, which is: "just give her some jobs to do and let her help me, even if it really isn't much help at all and slows me down - don't worry about it, just have fun with it". It worked a treat, and I was able to avoid a difficult spot.

And tonight, when Lyn told me before bed that she would go home tomorrow, I just said, "that's ok, Lyn. Whenever you're ready" knowing that she will have forgotten in the morning and I can remind her about our plan of action when she is in a frame of mind that can more easily cope with those changes. Until now, I've always felt that I must try to 'keep her on track' a little bit, but now I realise that in the evenings it doesn't matter - let her confabulate whatever she wishes and go with it. Tomorrow is a new day.

And I'm turning on more lights earlier.


Eternally, gratefully yours, etc

[livius drusus]

I'm so happy, Pets. Anything that can help you and her cope in a practical, healthy way with the confusion and fear she's experiencing is a good thing for both your states of mind.

Perhaps once the moving is over you can find a local support group. As it says in the link, caregivers are an endless source of tips and ideas for coping with Alzheimers. Besides, I think it'll be good for you to have some time to yourself you can share with people who understand better than anyone what you're going through.

Keep us posted, please!

[Pinecone]

Originally Posted by livius drusus

I'm so happy, Pets. Anything that can help you and her cope in a practical, healthy way with the confusion and fear she's experiencing is a good thing for both your states of mind.

Perhaps once the moving is over you can find a local support group. As it says in the link, caregivers are an endless source of tips and ideas for coping with Alzheimers. Besides, I think it'll be good for you to have some time to yourself you can share with people who understand better than anyone what you're going through.

Keep us posted, please!

Yeah that!!! for BOTH of you!!!