Caring for elderly parents? Pop in for support and a rant

[thesandwich]

Pace yourself, it's a marathon not a sprint!

This is a safe place to offload- don't be embarrassed about how you feel. No judgement here...

There are lovely people here with practical experience of some of the issues which crop up who'll share their hard won knowledge!

The username says it.

My mother is 93 and had a mildish stroke soon after my father died 6 years ago. She has lost the ability to deal with numbers and, I think, struggles with reading although she won't admit to it. Her speech is mildly affected and she can make herself understood pretty easily. She is mobile although she struggles, but I think that has more to do with arthritis. It's likely that she could be in the early stages of dementia, though sometimes I get the distinct impression that she doesn't appear to remember things because she's not listening so doesn't take them in in the first place. I visit regularly, while my sister who lives some way away visits around once a month, and we have carers going in twice a day to deal with medication, breakfast and a snack supper etc. She's in a sheltered flat where lunch is provided and there are people on call to help.

I completely get it that she's bored and depressed, but what I increasingly struggle to cope with is her total refusal to help herself, and her increasing nastiness. We have tried so many things to help her which require little or no effort from her, and she just won't have it. For instance, she complains that she can no longer get to the library, so when we organised the use of the service they offer whereby they will bring books to you she insisted everything they brought was useless - though it included precisely the type of book she likes. So we offered to take her there to choose: we could park outside and the library is ground floor level, but she completely dismissed the idea, and carries on complaining that she's bored with her own books. That sort of thing gets replicated day after day after day: it's as if she wakes up every morning utterly determined to be miserable. Whenever we visit she spends most of the time complaining and saying she wants to be dead. If you try to suggest she could make a tiny bit of effort to overcome a minor problem, she goes selectively deaf. If she used a fraction of the energy she uses for complaining in improving her life, she would be so much happier.

Visiting her gets worse and worse, because she can be apparently reasonably OK when you arrive, but will increasingly work herself up into a state while you're there. Regularly as we go out we can hear her screaming, apparently out of frustration, though she doesn't usually do it while we're there. Once or twice she's forgotten I'm only in the next room when she screams, and when I ask why or express any concern she acts as if she doesn't know what I'm talking about. Virtually every time I visit I come away wfeeling really stressed and depressed myself.

What particularly concerns me is how bloody nasty she can be to helpers. I've heard her on the phone talking to them really unpleasantly, and two or three times when I've gone in and she hasn't yet clocked that it's me she can be really rude. For instance, I recently went in at around 3.45 pm and she'd gone to bed. I needed to go in with her shopping so called out that it was me and went through to her kitchen. She called out quite aggressively demanding to know who it was and why the hall light was on, and I said again that it was me. She then shouted "Just go away!" from her room. I mildly said that there was no need to be rude, I'd come in with her shopping, and she shouted at me to go away again. I also heard her chuntering about how it was all very well to say she was rude, I shouldn't have come in when she was in bed - to which I pointed out that I could hardly have expected her to be in bed in mid afternoon. It's worth explaining that we went to the trouble of getting her one of those clocks that tells you whether it's morning, afternoon etc, so she would have known. In the end I just put her stuff away and did a couple of necessary jobs and left. As I say, I'm sure she thought I was a carer, but that doesn't excuse her outright rudeness to someone who is only there to help her. The care agency is very good about it and says they realise that elderly people get like this, but when all's said and done the carers are human beings who don't deserve that sort of treatment.

When we were children she would never have tolerated this sort of behaviour from us, and again we've tried gently reminding her of that, but again she just seems to block it.

I've thought about looking into anti-depressants, but I'm 100% certain that if I got her GP in she would swear blind that she had no problems and doesn't want anything. I suspect they might be reluctant to prescribe anyway in case they make her confused or dopey when she gets up at night, leading to a fall.

I do keep counting to 10 and reminding myself that her quality of life has gone down in a big way. But really she could be so much worse off - she's not in pain or ill, and she has the means to alleviate boredom and depression which she just refuses to use. I know perfectly well that there no easy answers, but I must say I'm increasingly depressed at the thought that this situation is not going to get any better. Maybe I need to find ways to help me cope, as she won't do anything to help herself.

Thigh Harrowing . May I suggest you stash a portable charger, a pair of knickers and a toothbrush in your bag. When things were grim I also had emergency hospital bags ready to grab in my parents' house for each of them.

So sorry, thigh

@thigh {gin}

Oh, thigh, I’m so sorry to hear that. Take your pick of , or a supportive hand squeeze.

And I’ll offer the same to you, Venting. I could have written almost every word of your post. It’s the deliberate nastiness and refusal to take even small steps towards self-help that is so hard to deal with.

thigh so sorry you are going through this xx

venting, like monica I could have written pretty much the same

thigh I'm so sorry you are facing such a tough time. Your DM must be in so much pain and distress.

Venting like others on here I could have written your post, the nastiness is so draining.

I suppose it's mildly heartening that my mother is no different from others - I must say when I look at what thigh's mother has had to cope with, it makes me all the more conscious that mine is really considerably better off than she thinks. DSis commented after a visit that it's like she's running around in ever-smaller circles inside her head and won't try to break out: she obviously needs someone or something to give her some sort of mental stimulation during the day, but she constantly pushes away anyone or anything that would provide it.

What complicates things a bit is that she's always been a bit of a hands off parent. When we were little we lived abroad and had ayahs to look after us, when we were older we were sent to boarding school and our parents were constantly the ones not turning up to open days, or were the last to collect us for half terms and holidays. So I sort of resent the fact that I do much more for her than she ever did for any of us - and indeed much more than she ever did for her own mother, who she visited around four times a year when she was in a similar situation. And then I feel bad for resenting it.

Classic sandwich generation thing, I suppose.

personally, I am all for the one way trip to Switzerland when I decide my time come

I've already told the kids to shove me over the cliff if I show signs of getting like my mother.

thigh all the hugs. I wish I could say something more useful.

God thigh how horrific. I'm so sorry - what indeed can you do in these situations.

I had bereavement counselling from Cruse after dh died earlier this year, she was just a very nice woman, very experienced, and it was helpful as far as it went. But increasingly I found that longer term stuff was coming up. I was lucky to be able to spend dh's pension on therapy for myself. I chose an integrative therapist and am finding it pretty good. Helps me break out of some of the circles of thinking I get into (and boy there are a lot of them). Helped me deal with the situation with my mother to some extent, though tbh this thread is pretty good at that.

I wondered if anyone would be interested to see the advanced directive I have now written for myself. I think the generic ones on the Age concern website are fairly useless in practice, and our local GPs have got one I think which also seems a bit rubbish. The next step is to get it put on my record by my GP, if they will agree to it. I'll post it - do skip past it if you aren't interested!

'IN THE EVENT THAT A FULL CAPACITY ASSESSMENT FOR A DECISION ON MEDICAL TREATMENT SHOWS THAT I HAVE NO CAPACITY TO MAKE MY OWN DECISIONS, PLEASE FOLLOW THE INSTRUCTIONS BELOW.

The instructions change based on my son's age (date of birth XX/XX/XX). Where an episode of care begins when [ds] is one age, but then ds moves to a new age category during the episode, care should change according to the instructions below. Therefore, for example, I might be admitted to intensive care when ds is still 18 based on the instructions in the first paragraph below, but the day of his 19th birthday, the instructions in the second paragraph below come into force.

If my son [name] born XX/XX/XX is 18 years old or younger:
All active treatment should be pursued for as long as my consultant believes it to be in my best interests, with the assumption that I wish to remain alive almost at any cost, including the acquisition of profound disability.

If my son [name] dob XX/XX/XX is aged between 18 years and 24 years old:
Ward-based care should be pursued. Intensive care support and ventilation should be considered only if there is a near certainty of me regaining mental capacity within a month from admission for major decisions on my own care, such as tube feeding versus feeding at risk of aspiration, or discharge destination. If it is considered that I am unlikely to regain capacity for these decisions, the ceiling of care should be on the ward and I should not receive intensive care support.

If my son [name] is 25 or older:
These instructions now come into force even if my loss of mental capacity is considered to be very brief and temporary, such as during a urinary tract infection.
My best interests in this case should now recognise that I have absolutely no interest in extending my life for its own sake once my son is fully adult. I have already spent some years working in hospitals, and the situations I have observed there have informed my decisions. I am also influenced by the observation of the lives and declining health of my parents, aunts, uncles, parents-in-law, friends and of course the death of my husband.
The approach to my care should now be entirely palliative, seeking to reduce any distress or symptoms I show, but without any focus on cure or extending life for its own sake. This includes avoiding radical radiotherapy or chemotherapy, surgery, antibiotics, IV fluids and any tube feeding unless it is considered that these are purely to reduce symptoms. For example, a feeding tube might be appropriate if it were considered to be the only realistic way of ensuring access to pain relief for me, or of making sure that I did not experience debilitating hunger or thirst. Likewise, palliative radiotherapy might be appropriate where it could reduce pain, but not where its only purpose is to extend life. Where possible, a palliative care consultant should take over my care if they are willing to do so, rather than a general medic or surgeon. This is not in any way to imply that I do not trust general medics or surgeons, but only that the focus on palliation should be aiming for the best care in this field that can be achieved.

My wishes on discharge destination should of course be considered. In general I would much prefer to die in a hospice than at home, where this is possible to achieve, but I recognise that this is not always possible or appropriate. A nursing home may be a good substitute for a hospice. The wishes of my caregivers and the reality of nursing a person to death should always be considered part of my best interests, in that I believe very strongly that a person is part of a system of friends and family, and that the idea of individual ‘best interests’ separate from the interests of the system around them can be very damaging. I do not wish my son to nurse me at home unless there is absolutely no alternative.

Signed

Name

Date'

Thanks for posting that, anna
thigh thinking of you.
cockroach all!

Annandale Thans for posting that, I've copied and saved it for future use.

Have a good look at it from your own point of view (and there's a typo dammit). It is possible that my gP will look at it and say 'well now I know you're depressed, take that away and come back after you've taken antidepressants for a few weeks' (we're discussing whether I should). But for myself, from my own experiences, I know it's what I want.

Still thinking of you thigh

Annandale Yes, I'll be interested to know what your GP makes of it. I thought about doing an advanced directive following an awful accident I had in my 30s. Part of the reason I didn't is that I have been treated for A&D for years and I was concerned about how the GP would take it.

as I don't have children, any advance directive I made would be summed up as "no extraordinary measures - do not wish to be kept alive if life changing injuries occur". I think even without the A&D, the GP would be a bit shocked to get an advance directive from someone in my 30s, as I was then, but it was a hell of an education, that accident.

now I'm 43, I don't think they'd take it seriously either. Maybe it depends on the GP.

Thank you everyone for the support.

Well, she does blame me. She said so to GTits/DSis. She said "I told Thigh i was in agony and she didn't come" GTits said "there was nothing she could do, she can't go to the toilet for you and you hung up on her twice when she asked if there was anything she could bring you".

I do feel bad, i was pretty detached and did go and walk my dogs instead but she goes through this twice a week and has all my life. I'm used to it and didn't know it was any different to normal.

Anyway she's in hospital now. Her face is scarlet, i think from the overdose. She's in agony still because she still hasn't completely gone to the toilet and the nurses are giving her laxatives etc.

Nurses were trying to ignore us but we've learnt. I said to them - you will struggle to look after her tonight because we're not staying, better if the dr sees her more quickly.

Thigh, Please, don't feel bad it is not your fault.
Can I suggest you take a step back and get some carers for your mum?
It is not your responsability even though It feels like it. When you cross the line being regarded as a daughter to being seen by your parents as a carer, it is time to have help from carers.
I have been there, ultimately it causes anger and resentment on both sides. That your mum blames you for her life circumstances is just not right.
Hope you talk it over with your son, finding dgm like that is just hard.
Hope this makes sense. Feeling for you.

Danish thank you, i agree with you, but they don't. There must be something that changes in the mindset as people get older. They are willing to take over your whole life and increasingly i am seeing it needs a team of professionals who go home and rest after a shift than one worn out daughter. You'd think one person can look after one person but it is far worse than babies, or am i misremembering babies? Very likely.

Fortysix very true re charger, toothbrush and knickers. I hadn't thought of the knickers but my handbag is getting heavier and heavier with emergency supplies. Very good idea of having a go bag for both M&D plus we have print outs of their meds in their wallets and mine. Those have been given out so many times.

Venting we had ayahs and amahs too and my sisters went to boarding school but i didn't as i think parenting norms had changed as I'm the youngest. M&Ds parents all died fairly young after brief acute illnesses so there was no caring, they were abroad anyway. Coupled with much longer parenting now and adult kids being dependent for longer than we were (certainly i was out at 18) i think we are having it worse. Will it be even worse for our kids though? I think we will be worn out more quickly than our parents.

You'd think one person can look after one person but it is far worse than babies, or am i misremembering babies? Babies sleep more. And they improve. A year caring for an elderly parent is nothing compared with the length of time you can be caring for them, a year caring for a baby sees you through from a newborn to whatever they're like at one year old (which I can't remember at this distance).

we have print outs of their meds in their wallets and mine. We've got little credit card sized laminated cards with next of kin and other contacts on one side and medications on the other. DF thinks they're wonderful!

thigh have your parents refused carers?

Glad to see you posting

Babies are also often pretty cheerful. And they grow up, in a good way. And people say 'oh yes do bring them' and smile, which they don't when you rock up with your elderly dm. And nobody much minds a baby filling its nappy.