What to do for the best?

[jstmcm]

My mother now needs 24 hour care. She has very reluctantly gone into a care home for "respite", but is absolutely adamant that she is going home after 4 weeks. (She only agreed to try it by making me promise that she would be going home after 4 weeks.) So far she has been there 7 days and no matter how confused she is about other things, she know how long she has been there and when I visit her every day she keeps on about how she can't wait for the 4 (now 3) weeks to be up so that she can go home. Today she talked about getting a taxi to take her home because she doesn't want to stay at the care home - luckily she does not have the ability to do that.

My brother and I have Power of Attorney (both kinds) so legally we can control where she lives, but for me that is not the only point to consider. My mother could live in her own home with 24 hour live in care. She would not like that either, but it would be the lesser of two evils from her point of view.

Whilst my brother and I both want Mum to stay in the care home, he believes that we should insist that she stays there no matter what she wants or how miserable she is. I believe that we should take her happiness into account, so whilst I would prefer her to be in the care home near me, if she insists on going home I think we should let her. Her own home is more than 2 hours away from me and more than 3 hours from my brother, so it is demanding on us to have to do all the travelling to visit her and deal with her affairs, but I am prepared to do it, my brother is not.

My brother keeps on telling me how everyone he knows says it doesn't matter what my mother wants because we have PoA. He has absolutely no empathy and is only interested in what suits him best (my son has autism and my brother has some traits, like this). I am so torn. I want my mother to be happy, but I would also love her to stay in the care home which is excellent and then I could see her every day. Although she keeps on talking about wanting to go home, she does seem quite happy with the care she is getting - often says how wonderful the food is and the staff are nice, and she had a lovely time at a singing event yesterday.

I just don't know what to do if Mum is still insistent on going home in 3 weeks. I want her to stay, my brother wants her to stay, but if I tell her she is staying she will be extremely upset, and I can't see that stopping after a day or two. She will also be very angry with me.

What would anyone else do in this situation? If you have had to deal with this sort of problem, what did you do and how did it work out?

Many thanks
J

 

[Benrese]

Hi JSTMCM,

This is such a difficult time and decision. After reading and re-reading your post, I feel pulled in the direction of leaving mum where she is.

I don't know what all her needs are. You mention she needs 24/7 care, but nothing specific.

In cases like this, if you remove the emotion and issues with your brother-it really looks like having your mum close to you is the best thing. I understand she is telling you she wants to go "home", but to be very honest...oftentimes "home" is a memory of a place and time no longer existing. If that makes sense?

I fear she would get to her house and in no time be desperately lonely. Yes, I understand she is stuck on going home and that currently it's forefront in her mind. However, things do progress in time, and ultimately it sounds like she would just have to go back again.

I can only go on what you've shared thus far. Perhaps you would like to add more regarding mum's health issues as well.

Hang in there, you are doing a great job. This is one of the most difficult parts you are going through-but it will pass.

Cheers,

 

[marionq]

Hello there! My Mum was a wonderful person and we owed her everything. In old age she became quietly self centred and although her illness was very demanding on as all with full time jobs and families she refused absolutely to go into care.

She had a number of emergency rushes to hospital and ended with a massive stroke which seemed to cause her to fall out of bed or the fall caused the stroke. The point is that we could see how it was going to end but she dug her heels in. I think she would have possibly enjoyed the company in a nursing home but we couldn't get her there. If you think your Mum is safe and well looked after then start planning delaying tactics to keep her there.

Good luck.

 

[pippop1]

I agree that delaying tactics should be used. For example we told my MIL in the care home that it was just while her house was being painted and the Dr said that it wasn't healthy to be around paint smells for her.

The fact that you and she are happy with the CH and she is nearer to you are the most important factors. What use are familiar walls and possibly substandard care compared guaranteed regular family visits and good care?

Make a white lie up between you and all stick to it. It worked with my MIL who now knows she's not at home but doesn't ask to go back to her old one.

 

[jstmcm]

Thanks for the replies everyone. Re my Mum's health, physically she is probably the fittest 87 year old around - has absolutely no problems walking, climbing stairs, etc etc, and has no health issues at all other than Alzheimers and using glasses and hearing aids. She used to be a passionate gardener and has a large garden; although she is no longer able to look after it, she enjoys walking round it and watering the plants obsessively. (Even when it has rained continuously for 12 hours, as soon as it stops she goes out to water things!) She can wash and dress herself etc, but needs help to get the clothes on right and to be reminded that clothes need to be washed when they are dirty etc.

She needs 24 hour care because she has become a danger to herself. She has started wandering, and wandered off from the house when we hadn't realised this had become a problem. She was missing for more than 2½ hours. She has also accidentally turned a gas ring on several times and didn't notice the noise or the smell. Thank goodness I or my brother were in the house at the time, as I dread to think what would have happened if she had been alone. She has left a switched on iron flat on the wooden ironing board several times, has switched the fridge off at the mains without realising, eaten or drunk food/milk which had gone off, left saucepans boiling which could have boiled dry if we hadn't spotted it, fiddled with electrical fittings to make them unsafe, tried to cut frozen food with sharp knives which could easily have slipped and cut her, and has had two falls. Both were caused by the alzheimers rather than poor mobility; one happened when she tried to climb through a window because she thought she was locked out of the house (she wasn't), the other was when she was trying to carry a very heavy hoover down the stairs (for no reason - she has separate hoovers for upstairs and downstairs and a minivac for the stairs themselves).

I know that if we did allow Mum to go back to her own home, it will only be a matter of time before she has to go back to the care home permanently, and we would then have the trauma of her knowing she was leaving the house forever, which would be dreadful. I just dread the thought of having to tell her now that she is not going home, having promised her faithfully that she was going home, because I know how awful it will be.

 

[Witzend]

24/7 care at home - if that really does mean someone on hand all day, all night - can work out even more expensive than a nice care home, since carers must have breaks and need their sleep. That may not be a consideration for you and this arrangement can work very well. However what may be more problematic, depending on your mother's personality, would be having someone constantly in her house. Some people resent bitterly some stranger 'interfering' as they see it, or stopping them doing this or that, or trying to get them to do this or that, e.g. have a shower. We looked into all this for an aunt of OH's who needed help day and night - no dementia but not an 'easy" person, and apart from the added cost, there was the fact that she had rejected every 'pop in ' carer we had arranged, on grounds of 'too loud' or 'too common' etc.

If you really think it stands a chance, then you can only try it and see, while bearing in mind that it may not work out, but even if it doesn't you have done your best to give it a go. Having said that, I agree with others that 'delay tactics' at the care home may still be the best option, or 'blaming it on the doctor', I.e.he/she wants her to stay until she's a bit better/stronger, or while they 'sort her meds out' if she's on any. However I know this is not so easy if someone is still able to remember that you have said much the same before.

The biggest headache with dementia and someone needing 24/7 care, is so often that the person does not or cannot recognise that they need it. As they see it, why do they need to be in a care home or have anyone living in, when they are perfectly well able to manage at home on their own?

One option I will admit to resorting to just once with my mother, when she was constantly demanding to go home from her care home - and by then she really did need 24/7 care - was to tell her that if we hadn't found this nice place for her, then social services would have taken over and put her somewhere not nearly as nice and smelling of wee. Which was a lie, since we had never involved SS at all. But I was pretty desperate then and in any case she invariably forgot anything I said within minutes.

Good luck - I hope you find a solution without too many massive headaches.

 

[Isabella]

I really struggle with this too. I know personal choice is the big thing that everyone is trying to promote. But for my mum, happiness meant being able to driver her car or go for a walk in January without shoes on. If what makes the person happy could potentially harm them, then as upsetting as it is there is no choice but to deny them what they want. Maybe try a different approach - tell your mum that you'd like her to stay near you because then you/her grandchildren would be able to see her more often. In the end my mum was happy to move because I explained how much closer she'd be and I'd be able to visit more often, which was more important to her than where she lived. Would that work?

 

[Oxy]

I've not been in that position yet as do it 24/7 but carer's at home is not reliable and I think would be more expensive than a good home with 24/7. Would never go down 24/7 live in personally taking into account trouble it has been to get one for a short time.
She has liked quite a lot of things eg music, food. Does the care home have a garden where she could help? Even if just tending her pots. She could put bulbs in now for Spring.
Most importantly, you have clearly got her into the home of your choice and a room has become available-it would probably get taken and then it may not be so easy when maybe a crisis occurs. Things you have mentioned make it unsafe for her to be left alone at home even though she is relatively fit.
I would visit as often as possible and take grandchildren in especially now it's half term and when she is enjoying herself reinforce how this could not happen at a greater distance. Also reinforce how you enjoy being able to visit her more. Could you take her out for a coffee or a place she enjoys so she realises how nice life can be with you close. I so hope it sorts itself but one thing to note is that it takes a few weeks for them to get settled and to do activities and enjoy them after first week is great.
She would probably be lonely at home alone if she could only get used to attention from all in time. Has she got some personal effects with her:duvet covers, photos and other little favourites? Good luck

 

[Katrine]

I agree with the excellent advice above. I've written something of a saga below. I hope some of it is helpful.

I have experience of making decisions for both options. My mum has had live-in care for 7 years, my MIL lived unsafely alone and is now in residential care. MIL would not have accepted strangers in her home and would have continued to wander at night, turn off her central heating, leave the gas fire on unlit, dismantle electrical equipment, have kitchen fires, and phone her family to come and rescue her from whatever was frightening her at that moment. She knocked herself black and blue against kitchen cabinet doors, furniture and her front steps (she just couldn't move around safely and anticipate/avoid hazards in her environment). In her case 24/7 care mean just that - night and day. She doesn't sleep 12 hours at night and 5 more in the day as my mum does. She needs a team support environment.

My mum is quite different. She is (after an initial period of toddler bolshiness and occasional spite) compliant with her carers, grateful for what they do and able to relax into being looked after like a pampered cat. She is physically frail and has shown no interest in running her own home or even making a cup of tea since she got back from hospital in January 2008! We chose the live-in option for her because:

a) She can afford it. Her money is draining away fast but she still has enough savings and income to sustain another 4 years at home with (as of a year ago) 2 live-in carers at once, which is much more expensive than a nursing home. She is 90 in 3 weeks time. We don't think she will outlast her funds.

b) I undertook to manage her home, finances and carer regime for the duration. I am unemployed/retired and therefore this part-time 'job' is sustainable in terms of my availability, if not my future finances.

c) My brother agreed to do half the support visits (we both lived a plane-ride away). That soon fell by the wayside as he had better things to do with his time, and he now lives the other side of the world.

d) She likes a very quiet, tranquil life of absolute routine, with her familiar possessions around her. She used to startle and sob at any loud noise. We had to change the telephones and doorbell because she freaked out so much. In hospital she sat hunched on her bed with her eyes tight shut to block out the scary strangers all around her. We could not imagine she could cope with the noises and challenging behaviour of other residents in a CH.

e) She is very self-focused and would have been bored by group activities and other people's conversations. She enjoys reading reciting and listening to poetry, and telling anecdotes. She dislikes music and singing, radio and TV, jigsaws, craftwork, knitting... what could an activities co-ordinator find to interest her? She would just want to retreat to bed and turn her face to the wall, hoping that she could die by sheer willpower alone. Believe me, she kept up that game here until the doctor put her on permanent antidepressants and she realised she couldn't get a carer to push her downstairs however much she offered to pay them.

f) She can still enjoy her garden (she was a great gardener). Mostly she just sees it through the window and is physically unfit to do any gardening, but in the first couple of years back at home she could still perambulate around the perimeter. We're currently having a wheelchair ramp built so next year she will be able to get outside again. She still says she wants to go and inspect her garden. We employ people to do some gardening and heavy pruning and I do the rest of it myself.

In my experience it can be a big commitment to undertake to be the manager of such a situation. We were told my mum would live 2-3 years, 5 at the most. She's still going strong and I am now nearly 60 and needing to plan for my own retirement, having missed out on 7 years of earnings and accrued pension entitlement. I do it because I know it is what my father would have wanted. However, I won't still be doing it when I'm 70. I will have run out of energy and she will have run out of money. When and if you start live-in care, I strongly recommend that you and your brother agree a timescale for review, and a suitable Plan B.

 

[Katrine]

I get the feeling you are struggling more with the guilt involved in breaking your promise than the actual choice to keep your mum at this CH permanently?

If she says she's only there for 4 weeks but is unable to do the countdown, this is the way to achieve a permanent change without overtly lying to her. It isn't a lie to say that she's there for 4 weeks, just keep that as her permanent goal. Many people need to feel that they are going home soon. It gives them a sense of control and choice. The staff will be used to fielding such aspirations with vague answers and positive distractions. You have to practice some answers that tell her what she wants to hear.

I'll give an example. MIL sometimes thinks we have come to take her home. Usually she accepts No for an answer, but there are times when she gets distressed and begs us not to leave her there. She might say "I can't go home until I find my keys. Where are my keys?" Her house has been sold, she has no keys, she cannot go back there. I would respond "You usually put them in your drawer. I expect that's where you would find them. Shall we go and have a cup of tea now?" Panic over for her. The keys are 'found', she can go home 'later'. I have not actually lied. If she still had keys, and a house, then she would probably find those keys in a drawer.

 

[jstmcm]

Thanks so much for your replies everyone, they are very helpful. I will certainly try delaying tactics, although it won’t be easy as Mum seems to know exactly how long she has been there and how long it is until she is going home, even though she is confused about everything else. We have noticed this before – when something is extremely important her brain functions much better than it does with everyday stuff.

Katrine, you are right that I am struggling with the guilt involved in breaking my promise, and also with knowing that I would be the cause of extreme distress for my mother.

Does anyone know if doctors might get involved in the decision? Witzend suggested blaming the doctors, although as Mum doesn’t have anything physically wrong with her there is nothing we can use as an excuse like medication or needing nursing. But I wondered whether the GP who visits the home every week might judge that she really would be better off in the care home and would tell Mum that she needs to stay there? I know I am trying to dodge responsibility for the decision, but I wonder whether she might accept the news better from a doctor than from me?

Many thanks again
J

 

[Katrine]

In my experience if you want someone to detach from the lifeline of 'home' then they need to be motivated to form an attachment to their new environment and carers. It sounds as if things are going well and she's enjoying staying there, so you're off to a good start. You will not be the cause of extreme distress. She's happy there. You just have to find a way to prolong her 'respite' without confronting her with the blunt truth. In Social Services parlance it is called temporary residential care 'with a view', as in 'a view to making it a permanent arrangement'.

At the moment you are visiting very regularly. I understand that you need to see her. I would suggest, however, that you need to withdraw for a week to allow her to focus on the new environment, and reduce her fixatation on her life outside. Can you plan to be 'on a course for work', or ' on holiday'? You could still ring for daily updates from the staff.

 

[HelenInBC]

Might I suggest that you don't have to tell her that she never going home. When my mom went into the care home, we told her it was just for a few days, so her carers could take a break. We kept telling her this any time she would ask. Then one day she just stopped asking anything about home or where she was. She just accepted it. If she hadn't, I think we would have just kept coming up with new reasons why she had to stay a little longer; the carpets are being cleaned, walls painted, whatever. The longer you delay, the better chance your mum had of settling in and accepting it. Good luck. I know in or case, we are so relieved to have my mom in care finally and safe from harm, for the most part.

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