Support for those who care for elderly parents - drop in as you need, everyone welcome

[CMOTDibbler]

All of us would rather not be here, but we need to be - with the people who really understand.

My mum was never a drinker at all. She would go pink and giggly with a sniff of any alcohol. A few years ago we went to a family wedding and she insisted on having her "only one small one", but forgot 5 minutes later that she had already had her "one", so ended up being very much worse for wear. My sister and I thought it was hysterical. The next wedding, a year later my sister was commissioned to swap any alcohol with a fruit juice to stop a repeat......however, my sister had to "dispose" of the champagne herself and ended up worse than mum had been at the previous wedding!!

I went and visited mum at the nursing home yesterday and I was so happy to find her playing skittles. (well, having a go anyway) She has not laughed and smiled so much for years. The day before we had found her dancing with a young male member of staff - she thought it was wonderful!! I have also started to realise that this is probably what is annoying dad - she is having fun without him and is happier than she has been for years while he was caring for her. I can now understand some of his frustration, not that I agree with it, but it is better to understand.

I hope you are all doing ok. I must admit that having some time off work is making it so much easier to do the visits and be sympathetic with dad.

SugarPlum, at least they can keep the visits short!

Bob, hope your visits went OK - could you get a cleaner in for your bro?

PA, that sounds great about your mum

My DM is sort of ticking along - seems much more coherent at certain times/talking about certain things. I am going to have to talk to the current care agency about her not really trusting/liking the girls and that she would really like older carers and that most of her worries are around nor being able to work/understand technology, eg TV remote and that she needs help with that.

I agree that dealing with the partner is just as hard, PositiveaAttitude.

My stepfather spoke quite aggressively to my mum. He would say I am not going to allow her to go this way. He seemed to think that nagging at her would somehow cure her.

She passed away a few months ago after 4 years in a home. She was so well cared for there by lovely staff. They would remark about how aggressively he spoke to her, but there was little they could do. He only went for one hour a week and she forgot immediately anyway.

He is becoming impossible to manage now. He lives on his own. It is severely disabled. I do so much for him but he has such unrealistic expectations and can be quite rude. Muggins here is the only one who feels an obligation to him, so I am at the forefront of his anger.

The thing that winds me up is that I get told off because my husband won't dance to his tune, the neighbours have stopped helping him, the doctor, optician and 4 hospitals won't do what he tells them. All my responsibility.

PA that sounds great about your mum, seems like the home is really meeting her needs. I think you've hit on something re your Dad. I guess it must be painful to support someone for years through the early and then progressive stages of dementia with all the stress that entails, only for them to move on and thrive in residential care. Florentina I think aggression towards a demented person is sadly fairly common from partners who can't express their stress and resentment in other ways. I used to work in palliative care and saw many a husband vent his anger and frustration at his sick wife. Not easy, don't take too much on if tyou can avoid it, easier said than done I know.
Went to visit my poor old Dad in hospital yesterday. He is very sleepy, shows no interest in getting out of bed, managed a few words and enjoyed eating the cheese i bought him. He has an infected finger and horrendous looking skin around his groin, due to incontinence and urine burns. It really looked like burns. Not sure what to make of the care on the ward and the fact that they have allowed this to happen. I asked for a doctor to look at it, clearly the medical team had no idea, he'd only just been fitted with an external catheter by a nurse and at my request, was not on any pain control nor antibiotics.I made it very clear that he needed good pain control.
A nursing home has been found for him and the room should be ready mid January. Unfortunately it is not in his home town nor on a train line.
His house is as expected really squalid, i have to face the fact that bro is a hoarder in the making. I saw that one of his mental health workers had sent something about a cleaning service which I really encouraged him to consider, but he's terrible at making decisions and of course raised an objection (it's £14 ph, which frankly seems bargainous considering the need). I have decided to mentor him and help with a de clutter but if no improvement happens I will take my distance after the next 6 months as i can't be his housekeeper. Nearly had an argument with DH who is longing for me to put down some of these family commitments.

Its lovely to hear about the care home. I am certainly coming round to the idea that a nice care home would be better for someone who is starting to disengage from normal community and who needs prompting to remaining use social and physical skills.

One of the challenges/benefits of the whole process has been me having to come to terms with aspects of my childhood. My mother was always a strong character and my approach before she was ill was to go with the flow and to keep my distance. Three years ago I had to confront and win, as the only option acceptable to my mother was to become well again. It was pretty brutal and she hated it as much as I did. Things have calmed down since. (A tip for anyone whose parent is refusing to accept necessary change is to stress it is temporary. "Until you are better." My mother knew she was struggling but could not face it being permanent.)

Once in a while something seems to happen which both triggers aggression from my mother, and an overly defensive reaction from me. Christmas did it this year. I had essentially forgotten that my parents used to go away every Christmas from when I was 17, which meant I was often alone. Some bizarre stuff like when we were invited down, but then the invitation was cancelled on Christmas Eve. Or another time when my dad phoned, passed the phone to my mother, who prompty put it down before speaking to the grandchildren. People say you only really grow up hen you have children. I wonder if you only really, really grow up when you parent your own parents. And actually it is probably no bad thing that my children get to witness the whole circle of life, and perhaps realise that as the layers of the onion peel away its important that the inner core is attractive.

Sorry, a bit deep, but it was that sort of Christmas.

Happy New Year to all.

Florentina, sorry you are struggling with your stepdad. It sounds tough.

PA at the hospital not looking after him properly. Hope it improves now you've had a word. And could you get your bros MH worker to tell him that he HAS to have a cleaner - that it's not negotiable?

PA sorry that this is bringing back unpleasant memories - I know myself that more have been uncovered for me as my DM has deteriorated. And she is/was quite a nice person, but with her own foibles/issues.

Hello all- sorry to hear w hat you are having to deal with particularly Bob and Tilly, florentina and pa.
all the practical aspects of the elderly parent- and then all the associated complexities of other relatives, practical challenges- and all the emotions and history from the past- I hear you SPT!
It is great to hear about good care in homes- and awful to hear about neglect and having to fight for care. How are you feeling Bob? Are you still taking time off?
Family get together here brought all the crap sibling behaviour to the fore- coupled with feral boys( I mean it!! We are used to lots of large families visiting- these are wild!)and my dm's behaviour also regresses to how she was in my teens, with my brothers as golden balls- even the one she has seen once in ten years......... I cope through mentally singing "let it go...." A la frozen...... And a large glass of wine.....
Florentina- do you have to take all this on? What is it doing to your life? Just because others don't does not mean you must. He has Some responsibility in this. Please take care.

Unfortunately I cannot walk away. Everyone else has because of his attitude. Mother was a very difficult woman. My lovely dad died was I was in My 20s. She remarried quite quickly . I cannot explain what a relief it was.

For all his faults he took good care of her for 40 years. He would not cope in the house without my help. I don't mind doing the physical things, I don't do his caring. I manage all his finances, carers, doctors cleaners, repairs etc. Sort out utilities but he is not easiest person.

I can forgive the bits that are related to his mild dementia, and his physical disability, but sometimes the bloody mindedness drives me to despair. Even his disability was caused by his refusal to go to hospital for weeks and weeks. Eventually the district nurse said we had to call an ambulance as he had forbidden her to do it. The crew told him he would die if he did not go.
Of course the resulting 5 month hospital stay was everyone's fault but his.

I don't talk to anyone about it as I expect they would find it quite boring and expect me to walk away and leave him to it. My OH could not stand my mother and does not think I have any obligation to her husband.

Pisses me off really, because I took care of my MiL for 12 years, while he and his brother very little.

Thank goodness for all of you, who are the only ones who really understand.

Oh florentina. This sounds so difficult. I do get why you feel you can't walk away- but please take care of how it affects you. Counselling has helped many of us change our thinking- managing the oughts and the shoulds, and protecting ourselves.
Who is supporting you in rl? A wonderful friend helped me compartmentalise and work out what I felt I could do and set boundaries. Rant away here- loads of wisdom here. Take care.

I understand what you are saying Florentina. I have seen my DHs jaw harden when i talk yet again about my Dad or bro. For him there are always simple practical solutions, but as we know, working with/ to help human beings is not always simple and logical. One does feel a sense of commitment and obligation, and in my case, I am no longer ashamed to say, I am hoping that taking my distance from a sibling who refuses to help himself will be easier than walking away from an elderly relative.

I don't think my DH quite gets why I feel worried/responsible, etc.

Have had DM's carers on the phone twice now - yesterday flapping about the milkman having delivered 6pints of milk, 2 loaves and 12 eggs. She apparently rang him 5 times after he had said he would come and get it (despite her having "ordered" it on the Christmas form) because he didn't come immediately. Today they rang because she had rung them because the heating wasn't working (I'm pretty sure she had fiddled with something) - luckily they seem to have sorted it out. And she said she didn't know where DH and I were despite the fact that she waved us all off on Monday and I spoke to her yesterday. I am hoping it is due to us going to see her - we are going to monitor it with the carers and see what to do next if she doesn't settle down a bit

Happy New Year folks!

Happy New Year !!

You could do with someine on the spot who can just deal with these things really BTM couldn't you? Although a bit of time away, would be good if new agency you're seeing at end of month are more proactive.

Yes, SugarPlum - exactly! However, I really can't fault the lovely care manager who went round today. She was able to calm DM down and get it sorted - I feel bad about looking at another agency, but I am still going to meet the manager of the new agency. I will also be keeping in even closer contact with the current one to see how things are going. I am not totally convinced that a new agency will be any better - I guess it's down to whether individual carers can gain her trust.

Yes I think it is and I found that wasn't a particularly quick process. I think my Mother's do now have her trust and recently have managed to get her to start going out to eat at the restaurant. It has taken six months though to get there.

When it's carers in your house it is the whole losing control thing so big adjustment.

Yes, that is definitely a thing for my DM - she has had such tight control over life for the last 35 years, and likes to do things her way...

Sounds familiar ! I guess it must be hard, being aware that your memory is going and then someone coming in and effectively telling you what to do, however we dress it up.

Happy New Year everyone. I haven't posted for a long time because everything got very fraught and then my dad died. I'm struggling at the moment with supporting my mum, who is another rather difficult woman with very high expectations. I've just started a thread in Chat (so that it eventually goes away).

Reading all your posts I am beginning to realise how lucky we have been!! Tilly we had to have carers for a totally different reason a few years ago - it was for my daughter and she did not get along with the older carers and I really didnt want to rock the boat by explaining this, but it was making the whole situation difficult. When I broached the subject with the agency they were amazing and totally understood DD3's reasoning and reluctance. I know it is totally different from you mum (reversal actually), but I am sure the care agency will take your concerns fine.

Here I am going to have to phone the nursing home in the morning and warn them that dad is on the war path. He has said he is going to demand why he has not been told about the plan for getting mum better and getting her home again. He truly believes that mum is just being awkward and that she is playing about, She should be slapped like a naughty child to make her see sense and be well again.
My sister who is the biggest help is going on holiday for 5 weeks starting on Tuesday. That means 5 weeks of me being first and only port of call - normally a few times a day at least and a few times each evening. Deep breath and get through it is my plan.

Hello all- sorry to hear of the challenges you are facing- amongst all the other stuff of life. Pa- that sounds very hard. Does your dad respect time if say you said you'd call him at a set time? Is there anyone at the home who could talk to him? Or a doctor? It must be awful. Hello more- have you name changed? Hope you are doing ok.
Bob are you still taking time off work? Are you feeling better? How are things?
Good wishes to all.

Thanks PA, that's really helpful. I am also thinking that maybe if we try the new carers, I could present it as someone who would come round for a chat and help sort any small problems out - like a friend rather than a carer IYSWIM? Maybe just once a week in addition to the 2 x carers coming to do cleaning, etc? But I'm going to see how the next few weeks go till then.

PA that sounds terribly draining re your dad. I agree with thesandwich - is there an important looking older male doctor who could really lay it on the line to him - just thinking that might be the kind of person he'd listen to?

PA, my dad is just the same. He tells me all the time that mum is 'being awkward' and he 'has to threaten her with hospital' to make her behave.
No matter how many times I, or anyone else, explains to him that this isn't the way it works he just can't accept or understand it. I think its his own problems that get in the way here, and his brain can't make sense of it all.
I got told off yesterday for saying I hadn't done something as was enjoying my holidays - he told me he didn't get any and I was selfish.

BTM, I think thats a great way to present them. Just someone popping in to make sure all is OK, give her a hand with things

BTM That sounds like a really good move. I know that if my dad "clicked" with someone he is far more likely to accept help from them, so going in as a "help" will take all other expectations and frustrations away. Good plan!

CMOT Totally get the selfish card thrown this way often too!! I often have to remind myself - and DH is very good at reminding me when he needs to, that it is dad's frustration talking when he says nonsense and as much as his mantra is "No-one understands me" it is actually the reverse and we do understand far more than he does, but he can only see a very small select viewpoint of HIS life and there is no headspace for him to see anyone else's issues, or point of views.

Off to see mum and see if I can catch a member of staff to warn them without my dad seeing me do it.

Hello everyone and thanks for asking about me Sandwich.
I am returning to work on tuesday after 4 weeks of being signed off by the GP. Rather anxious that there will be repercussions in terms of disgruntled colleagues/ manager being even more critical about me when I get back (the stress was a combo of work issues and Dad's care spiralling out of control after he deteriorated sharply). Have been giving myself a talk about coping strategies for work.
No news from hospital/ carers/ bro. Will go and see Dad next Saturday and also go to his/ bro's house with a hired van and take a load of junk to the dump to try and make the place more habitable, although I suspect bro will not be able to live independently now that carers are no longer going in for dad. The place looked truly sordid when I visited last week. Not sure what the next step will be for him, but I am resolved not to become his housekeeper. After 21 years of responsibility for grandparents then Dad I feel it is time for me to step down a bit rather than take another huge project on. Heck, if i did I'm not sure I'd still have much of a marriage in a couple of years!

Bob, that sounds very sensible. If he/you could get a decent cleaner (as recommended by his MH team?) in, then I'm sure that would help. And if it doesn't, then surely it's up to the MH team to take the next step?

Thanks BTM have already had a call from a MH professional (I had contacted her when I saw a letter she'd sent bro re domestic services) she was quite proactive and is going to talk to bro's key worker and then go and visit him with her 9that's the plan anyway).