Advanced search
Affected by Dementia? We have a new Talk topic specifically for Dementia, please do pop over and take a look

Visit the Dementia Talk topic

Keep me sane!

(12 Posts)
MrsCosmopilite Wed 28-Jan-15 15:52:49

Hope you don't mind me joining the board/forum.

I am not in the situation where I have elderly parents to care for as both are deceased. However, I have a very elderly relative for whom I 'look out' as does my sibling.

This relative was very recently bereaved (last week) - their long-term spouse of almost 65 years died peacefully at home. There are no children, so just myself and my sibling.

Neither of us live nearby, and both have families, we work/study f/t whilst juggling care at home arrangements (via care agency) for said relative.
Relative is unable to deal with funeral arrangements and we're doing all we can, but this person has always been anxious, and, quite frankly is driving me crazy.
I know they are bereaved, and I know they are lonely. I am doing my utmost to be helpful and sympathetic but I cannot telephone three or four times a day. I cannot visit daily (sometimes I cannot visit weekly) but we do our best to maintain regular contact and reassurance. Any offers of increased care package/being taken out to day centre/having a befriending service are rejected.

I don't snap at this person, I am always considerate and polite, but I feel at the end of my tether.

The situation has been worsening over the past three years, when relative and their spouse were simultaneously unwell, and spouse gradually dwindled away over the years.

It is not possible to move relative in with me or with sibling as our houses would need a major refurb to afford safe accommodation.

Relative is 90, has had a stroke (14 years ago) and a hip replacement and is mobility impaired. Relative suffers with anxiety but seems to almost expect that sibling and I will do everything. Most recently said 'I don't want carers, I just want you and sibling'. sad

MrsCosmopilite Fri 30-Jan-15 19:15:07

Someone, anyone, please? I feel as though I'm being emotionally blackmailed.

Prior to the death of the spouse, me and sibling have had around 18 months/2 years of this. Relative has never dealt with financials or legal issues so we've had to take all this on, plus liaising with hospital/social workers/physiotherapist/doctor/care team/bank/insurance/telephone/property manager/medical equipment provider/home safety provider. Plus finding and getting in as necessary: locksmith, plumber, electrician, carpenter, and having to be there when they attend.

The constant 'background' is the plea "You won't forget about me and leave me on my own?". Which is then interspersed with "I don't want any fuss. I don't want all these people in." and "I only want you and your sibling to help".

twentyten Fri 30-Jan-15 22:10:32

I'm so sorry- it sounds really tough. You cannot take all this on. What do you feel you are prepared to do? Think about what you can do and then put what you can in place. It is very soon post bereavement but you cannot do it all. Sending thanksthanks

MrsCosmopilite Fri 30-Jan-15 23:02:03

Thanks twentyten - I think I'm doing all I can. Essentially me & sibling are doing PA/admin/financial/legal matters, and visit when we are able.
Carers are in place and are supporting relative very well.
Just feeling it a bit after nearly 2 years of the same old same old. And hate that I feel it is 'the same old same old'.

AvengingGerbil Sat 31-Jan-15 08:00:55

So sorry, this must be very difficult for you. Does your sibling feel the same way?

I'm afraid I don't have any answers, but hope this will bump for the more experienced crowd!

MrsCosmopilite Sat 31-Jan-15 11:04:09

Avenging - yes, my sibling is in the same position. We're about equidistant from the relative; but in opposite directions. There is no parking at relative's home, so it's public transport, which makes the journey there approx 2hrs (give or take).

Both sibling and I are experiencing symptoms of stress: hives, eczema, mouth ulcers, irregular periods (me), hair loss... and it's impacting on our families -we're snappy, short-tempered, irritable, and have both had colds/upset stomachs/viruses on and off since the whole thing got so chaotic.

It's theraputic just to talk.

As I said, I don't think we can do more. Neither of us are in a position to house the relative with us; combination of young children and their toys presenting permanent trip hazards, no ground-floor bedrooms, narrow/winding stairs (and banisters to wrong side to allow relative to climb them anyway).

I visited last week, as did my sibling. I'll be aiming to go and visit again next week. Unfortunately this is putting me further and further behind with coursework, but I'll have to just juggle that as best I can. Sibling is equally behind with work, and this places additional stress on them.

bigbluebus Sat 31-Jan-15 17:27:50

I feel for you OP. I have a similar situation only with my DM. Everything was fine until DF (her partner of 60 yrs) died suddenly and unexpectedly. We contacted Social Services and got carers in inspite of my DMs previous protestations about 'strangers' in the house when DF was alive and slowly killing himself with the strain of it all. She did allow carers a couple of times a week to help with bathing but refused point blank to go to any pensioners club/day centre activities despite whinging constantly about being lonely.

She refuses to use community/hospital transport for anything and has got my DB run ragged with taking her to appointments - even though he lives 70 miles away, has 2 jobs and 3 children. I try and visit every 2 weeks (80 miles each way) even though I have to book respite for my disabled daughter to get there.

Never a week goes by without there being a 'crisis' everyday kind of problem which I have to sort out over the phone. I think every electrical gadget in the house has 'broken down' at least twice and the reason is usually 'operator error' hmm. Every letter that drops through her letter bokes invokes panic even though it might only be a charity begging letter!

The stress this has put on me has resulted in me suffering from panic attacks - something I have never suffered from before. My DM is unaware of this (as rather than be sympathetic it would just cause her nore stress) but I have tried to reduce visits so that she will accept more 'paid' help or decide finally that she cannot stay where she is - although I can't see her wanting to pay Care home fees as she already moans about every little bill she gets - even though she can afford to pay for things. Likewise, there is no way DM can live with me or DB for varying reasons.

No matter how much running around me and DB do, I have still had DM say to me "I feel abandoned" and "I never see anyone" - even though someone (neighbours/carers/friend) call in on virtually every day of the week.

I don't know what the answer is OP but you are not alone - ths country is awash with carers running themselves into the ground.

MrsCosmopilite Sat 31-Jan-15 18:37:45

bigbluebus - that sounds very like the situation my sibling is. She does not have to care with children with disabilities but one has been very unwell and the other is pre-exams at school, suffering anxiety/panic attacks so I completely hear you.

Shall we all have a wine? smile

MrsCosmopilite Sat 31-Jan-15 18:38:01

*is in. And I'm sorry that you're suffering too.

bigbluebus Sat 31-Jan-15 21:08:03

Thank you MrsCosmo,I am already on the wine grin.
My other DB who lives the other end of the country is visiting DM this weekend so me and DB1 can relax for a couple of days.

Needmoresleep Sun 01-Feb-15 11:55:41

Yoour story will sound familiar to most of us. None of us can do everything, but what is enough. How do we say no to the rest without feeling guity. And then how do avoid feeling guilty to others with calls on our time (DH, DC, employers.)

In my case as a benchmark I have tried to ensure my own family do not have reasons to feel resentful. In my case I was able to insist that my family were not left out of pocket, which helps. I still have the occassional wobbly and moan but was also lucky in that a crisis meant I was able to move DM to somewhere with a level of support which allows her as much independence as she is capable of without much burden falling on me.

That said I wont claim that the transition to a place where she is genuinely as happy as she is likely to be, was easy. Some of the verbal abuse was awful, at times overwhelming.

I know others here have used counselling as a means of sorting out their own feelings and coming to a point of identifying what is realistic and accepting that this is enough.

I would suggest a read of "The Selfish Pigs Guide to Caring" by Hugh Marriott, which addresses some of the emotions we all have but may not feel able to admit to. I would then look at the various options and discuss with your sister which way you might want to go. You really want to both stay on the same page. if at all possible. I am not an expert on processes, but I would call the number for Adult Social Services in your area, explain the situation and that realistically you are not able to meet your relative's needs or expectations. (If she is not already known to social services it is not a bad idea to do a referral anyway as this will influence discharge decisions etc should she end up in hospital.) Ideally they might do a home assessment and perhaps a case conference. If your relative has money they should happily advise you on suitable sheltered options. (The problem is with people who dont have money as SS dont have enough either.) I would look into applying for Attendence Allowance. This provides fund whci can be spent as she wants, so could be used to reimburse you for petrol, and also can open the door to Council Tax expemption.

The two big "excuses" I used for imposing solutions on DM were "the Doctor says" or "DH is not happy". She comes from a generation where husbands could dictate, and where doctors were to be obeyed. As a result she was genuinely worried that DH might put his foot down leaving her alone, and as a result was willoing to show some flexibility. My own needs, obviously, counted for nothing.

MrsCosmopilite Sun 01-Feb-15 12:02:56

Thanks Needmore. I do speak to Adult Social Service but currently relative is adamant that they wish to remain in their own home. To be fair, they're able to do a reasonable amount for themselves.

Doctor is a source of intense dislike, and I get the feeling that relative is considered a 'trying' patient as they will not bend to Doc's suggestions of moving to a care home.

We've actually just had a home assessment, but I've not had an opportunity to peruse properly yet. That's a job for next week.

We have attendance allowance in place, and money is not an issue, other than a reluctance to spend it. Working on that one... smile

I'm going to take a look at that book though and will review (after reading assessment from Social Services) your points above.

Definitely the guilt is the problem. Guilt and feeling that I get frustrated by the constant emotional strain.

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now