Caring for elderly parents who don't help themselves

[SheWolf]

Latest depressing update in this sorry saga.

I've been very worried as I've not been able to get Dad to eat anything substantial since Tues (after the Doc visited and gave him a pep talk). I don't think he's washing as he's getting a bit whiffy, but I did manage to get him to change his shirt yesterday.

I'd like to get him in the shower but as he's so weak and depressed it's not the time to force that issue. Yesterday I even gave him a miniature bottle of whisky (double measure) which made him smile. However, it didn't make him eat (though he drank the whisky overnight). I keep explaining we need to build his strength up then he'll feel better and I can take him out (I've now got a fold up wheelchair), but with his dementia I'm not sure how much of our conversations he remembers.

Had been expecting various aides to be delivered this week, including perch chair to use for washing at sink, and walking frame. Nothing arrived. Had also been expecting the SS/care agency team to contact us and offer an assessment/home visits as we had discussed... but again, nothing.

Decided to go over to the hospital today and talk to the OT lady, as she's very switched on and helpful. Appears her fax order re the equipment never got received by the team... she will sort that pronto and we can expect the stuff delivered Monday. Meanwhile they referred Dad's case onto the response team (again!) as we seem to have slipped under the radar. If Dad was eating and getting stronger it wouldn't have mattered, but the way it's going maybe a team of strangers would handle him better. I don't like it and feel like I'm admitting defeat, but alternative is that he ends up in hospital - again!

I'm told that somebody will come out to us on Sunday afternoon to assess everything: home and Dad's care needs. We can have up to 4 visits a day for 6 weeks (or maybe 4.5 now as he's been home 1.5 weeks?) but I think that's probably overkill. Not sure what to do, as chances are every time the carer turns up they will find Dad is upstairs in bed, no matter what time of day it is.

Mum doesn't want the key safe on the door, so as a compromise I've bought a special loud door bell, which can be plugged into any socket. I plan to ask my husband to sort this for me tomorrow afternoon, if possible. At least if the thing is plugged in somewhere in the living room near Mum she can't deny hearing the doorbell! If she still doesn't co-operate then the key safe goes on the wall.

This is not how I wanted things to turn out, but I'm feeling totally drained and depressed by all this now. It's not the physical stuff that's wearing me down, it's more the fact that my Dad is refusing nearly everything I offer him, foodwise, and is not even drinking enough fluids. It's like he's committing suicide, very slowly. Meanwhile my mother sits in the corner, watching all this go on, but is seemingly totally indifferent to whether my father lives or dies. She SAYS she's worried about me and I mustn't overdo it, but she offers NO HELP at all, despite being fairly nimble on her feet and having nowhere near the amount of mobility issues that my father has. She has made him ONE cup of tea in the 10 days since he came out of hospital! I kept saying to her that if she helps out a bit and makes him a cup of tea in the morning and one at night that would be so helpful and inbetween I will try to make sure he eats something, but she just can't be bothered. She pays lip service to caring about me, but actions speak louder than words and she's just content to step back and let it all happen. She doesn't want a bunch of strangers coming through the house and I tried to avoid that, but now I'm left with little choice, because Dad is not the only one who's losing the will to live now. I'm totally drained.

[Anne001]

Hi SheWolf,

I dont unfortunately have anything useful to add but I just wanted to send some hugs your way. I'm not surprised that you are exhausted; you are doing your very best and that is all we can do. One question - would your dad have hot milk, if it included a nip of whisky in it? At least he would be getting some nutrients ...

I know how frustrating this is; I too struggle to get my mum to eat and drink. Beginning to dread the supermarket shop as I stand there for ages wondering what might tempt her.

[SheWolf]

Thanks Anne, and I know just what you mean about the shopping - it's so difficult trying to find things to tempt elderly people who've lost their appetite (Dad) or have trouble swallowing (Mum). One thing I did some time back was to start doing my parents' shopping online once a week. I find it very convenient as most weeks I'm ordering the same few staple foods/drinks that I know will get eaten/drunk, so I can do a repeat of last week's order but then add on a few bits and pieces to try to tempt them. Also, it saves me one more visit.

Things have changed quite a bit since I last posted. I accepted the 6 week aftercare package, which involved a carer calling every morning to help Dad wash/dress, take his meds and have some breakfast. The problem was, they couldn't guarantee the same carer would visit each day, nor could they give any indication of what time the person would call - it could be any time between 7 and 11am! My father is not an early riser, so was often still in bed when they called and many times refused to get up, so the visits were next to useless. In the end the visits were causing more problems than they were solving as Dad resented a never ending stream of strangers arriving at different times each morning, so I cancelled them.

Meanwhile, by chance I got to know of a very nice, experienced carer who had recently moved into a house just a few doors away from my parents. She had been doing care work for years, but had had to take a job she hated when she moved into the area a few weeks back, so was hoping to get back into care work. She has a lovely personality and is both kind and caring. She's also quite attractive, which probably helps when dealing with elderly men. . Dad liked her instantly, so to cut a long story short we are now paying her to care for my father every morning and afternoon, to give him meds, breakfast and afternoon/early evening meals and generally encourage him to wash/change his clothes etc. She is working about 14 hours a week for Dad, and during that time he has begun to perk up and his appetite has slowly begun to return.

The carer has even started doing the occasional fried breakfast as a treat for Dad, which he loves, and she has got him interested in doing crosswords with her (something he'd never been interested in before). So, things are on an even keel now, and I'm thanking my lucky stars that the right carer came along at just the right time. I've learned that the right person for 2 or 3 hours a day can work wonders, but I realise that as Dad's dementia progresses he may need a LOT more help eventually.

One thing that I'm finding a bit hard to get used to is the fact that I no longer have to visit my parents every day... in fact I could probably get away with just visiting them once a week, which is a real shock to my system! Suddenly I have much more free time on my hands, which is great, although I do have a tendency to wonder what's going on round there on the days I don't visit. Also, as I've watched the effect the professional carer has had on my father, I've sometimes felt like a failure, because she seems to have so much more patience and imagination in the way she handles my father - she just knows how to bring the best out in him, whereas I just didn't have the knack. Still, we've never had the best relationship, so I know it's silly to dwell on this, but I wish things had been different. Like somebody posted before, when carers come in the situation changes radically, for the better in lots of ways, but the emotional stuff is still there. Anyway, I'm very relieved we've found the right person to care for my father. It's been a massive change for both of us but I'm still getting used to the fact that my visits are now surplus to requirements.

[bowlingbun]

Your visits ARE still important, but your role has changed, for the better. It took counselling for me to realise that I was fed up with all the work I was doing when I went to mum's. I needed to just be her daughter, especially as I have a son with LD. I leave the work of running her house to others as much as possible. Now I have time to do things like cut the roses and prune the rose bushes, a skill I learned when I was very, very young. I can report on the plants in the garden which are in flower which mum can't see, and move the pots with plants in that are flowering nearest to the french doors, where mum can see and enjoy them. It's so much nicer this way. Hope that helps.

[SheWolf]

Thanks Bowlingbun. I think you're right, I just need to get used to the idea of letting somebody else do the bulk of the caring - I'm finding it a bit hard to let go. Part of me is also very aware that this phase may not last very long, so I keep telling myself not to take my new freedom for granted.

I had feelings similar to you about all the work I was doing at my parents - sometimes I felt like their unpaid cleaner/housekeeper/cook and I really resented it at times, partly due to the history between us (we were never a close family). But for now things are easier and I will try to do more of the nice stuff with them, rather than the essential chores.

I'm trying to limit myself to two visits a week, and setting myself small goals to achieve with my parents, things that the carer may not have time or be able to do. Today my goal was to clip my Dad's beard off. He stopped shaving months ago, saying he wanted to grow a beard, but really it's because he doesn't like shaving now. So, I was quite pleased when Dad agreed to let me clip his beard, and with the little beard trimmer I managed to get the thing removed in a few minutes (that's about as long as he could put up with - he has no patience). I would have liked to give him a proper shave but he doesn't have the patience to let me do that, so he was left with some "designer stubble" but anyway he looked a lot better and the carer remarked on how smart he looked.

Roses - ahh, I LOVE roses but don't really have the ideal garden for them, so I've planted some in large tubs that I move to the sunniest part of our garden in the spring, near the patio, then once winter comes and they're dormant I move them to a quiet corner. That way I make the most of them without having them in the prime spot all winter, when they just look like dead twigs. Funnily enough, today I spent quite a bit of time in my parents' garden, dead heading the roses and giving them a good watering (it was SO hot today). While I was there the carer actually managed to get Dad to take a walk out into the garden to see what I was up to - quite a feat as I haven't managed to get him outside since he came out of hospital. So, all in all things are looking up.

[Juggler]

What I find difficult in 'handing over' the jobs is that they are done so poorly. The cleaner gives 'a lick and a promise' rather than a thorough clean no matter how many notes I leave and I can see the dirt building up. I can see me going there to do a thorough clean while I'm on sick leave...

[bowlingbun]

Juggler,
Would it be possible for you to employ a cleaner (or extra hours from existing staff) for half a day to work with you to do a proper spring clean in one or two rooms? Then you could supervise and work with her, and make sure it was done to your standards.

[Juggler]

Juggler,
Would it be possible for you to employ a cleaner (or extra hours from existing staff) for half a day to work with you to do a proper spring clean in one or two rooms? Then you could supervise and work with her, and make sure it was done to your standards.

Good idea - thanks!
I think one of my problems is that it's not up to Mum's standards - mine, for my own home, are different . It's Mum's anniversary next week (4 years since we lost her and this year would have been her 91st birthday) and it's probably playing on my mind too that things have gone downhill since then.

[SheWolf]

Not sure whether to start a new thread but things have taken a downturn with my mother over the last few months and I'd be grateful for any advice. Back in August my mother's weight dropped down to 6 stone 10 and suddenly the medical profession began to take her problems more seriously. She had various problems/issues with eating/swallowing, but due to her depressed state and the fact she was neglecting herself the psych consultant called it "passive suicide" and got her admitted to a psych unit. She was there 2 months and had ECT plus anti depressants and lots of people encouraging her to eat proper food. She seemed to rally round and finally agreed to have an endoscopy, which revealed her throat was constricted and eventually she had a second endoscopy, where they stretched her throat. All very unpleasant but she seems to be tolerating food much better now and is just over 8 stone - a great result.

However, she has gone drastically downhill on the hygiene front and I'm struggling to solve this problem. For some months now she has been wearing incontinence pants as sometimes her IBS has resulted in toilet accidents. The problem is though, she never wants to change them - even when she's messed them! Several times over the last month I've arrived to find a foul smell in the house as I open the door. Often I will cut to the chase (subtle gets me nowhere with her), saying "Mum, I can smell something... I think you might need to change your pants" to which the reply comes "Oh no, they're fine, it's just wind!" I then have to push it and make her stand up - sometimes I can see a wet patch, or worse... then I say "Mum you've messed yourself, you have to change your pants and trousers!" She then caves in and changes, but refuses a shower.

I can't get over the fact that at times my mother has sat in her soiled clothes for hours, even overnight, then still tries to deny there's an issue,preferring to sit in her own mess! I know that even when she was in hospital the staff had the same issues with her and they said a lot of old people are stubborn and difficult on these issues. I've asked the carers to encourage her to change her pants daily, but they don't have much luck with her. I guess they don't feel they can push her too firmly on this, so it's mostly down to me.

I'm so shocked she can sit in soiled clothes like that. When I questioned her about it, she just said "Well, it's my own dirt and it had dried anyway so I don't think it matters". I've explained over and over the risks of urine infection etc but it seems to fall on deaf ears. I can see she'll be back in hospital soon. Any ideas, anyone?

[bowlingbun]

Sorry, can't make any suggestions about how to change mum, but I can send you a big (((HUG))) for having to deal with this.