At the end of my tether

[Judith_17081]

Hi, I have had a particularly stressful 3 months with my Mum in and out of hospital followed by a period of rehabilitation in a home. Each admission was in part due to her failure to look after herself - to eat, to drink, to look after her mental health etc. She has just returned home withadditional temporary assistance from Home Support. Although Mum admitted that she had not been eating or drinking and realised that her actions were directly responsible for her ill health and despite her promises that she would try harder I find we are now back at square one less than 48 hours after her discharge. I have to confess to ranting at her because I cannot do this again. I am her sole carer and also work full time. My health is suffering, my relationship with my husband is suffering and I have already lost one job because of being incapable of doing the work due to the stress. From reading the forums here I realise that I need to step back and allow her to live her life the way she chooses - if she chooses to live it in an isolated, dehydrated, malnourished state then that is her choice. However, it is not easy to just leave her to it. My Dad died 3.5 years ago and I have tried - and failed - to fill that gap in her life. She has found it impossible to move forward and spends her days just sitting crying about her loss. I feel that I have let her down when she needs me most but I am truly at the end of my tether.

[jenny lucas]

Do you think dementia may be creeping in I wonder?? 'Self-neglect' is one of the 'symptoms' - my MIL gradually became more and more 'helpless' but also profoundly 'uninterested' in looking after herself. I could leave food in the fridge that was really, really easy - eg, quiches that popped in the microwave etc, that sort of thing, but would she make herself supper? No. Eventually she wouldn't even make herself toast for breakfast, or a cup of tea.

It was her mind giving up - she was forgetting how to do things, and forgetting that she actually was hungry.

I do think, sadly, it might be worth checking this out. Grief can be highly, highly debilitating, and perhaps yes, she 'just wants to die now' (subconsciously at least) (eg, to 'follow her husband), but I also think that dementia could be behind this self-neglect alas.

Does she have care-workers go in a couple of times a day? If not, can that be arranged? They can prepare food and stay while she eats it.

That said, she may refuse. The second time the care-worker I booked for my MIL turned up, my MIL refused to let her in and sent her packing.

The depressing thing was that because she wouldn't accept careworkers coming in to look after her she just had to move in to a care home, which she hated (she didn't realise or accept she needed to be there)(and sadly, just wanted to move in with me permanently, sigh).

It can help, with or without dementia in the frame, to think of the very elderly as 'elderly toddlers' - they lose the ability to know what they need.

Do you feel she simply wants YOU to come and look after her???? That is sadly, VERY common (understandably so.)

[Judith_17081]

I have spoken to her GP about the possibility of dementia but he was adamant that that wasn't a factor although no formal assessment was carried out. I think she just wants me to be there full time. Both my sister and my husband feel she is manipulating me - there is always a crisis so I have to rush round, she is always more ill if I say I can't go round on one of the usual days etc. Depression has really taken hold but she won't entertain counselling, lunchclubs (for social interaction), or even leaving the house these days.

[bowlingbun]

Judith,
I was widowed 11 years ago, when I was 54, my husband had a massive heart attack and died in his sleep. However, I was determined that I would get on with life, especially so since the previous year I had live saving surgery.
If mum has just been discharged, and is not coping, then that is a matter for the doctor and Social Services to resolve, you CANNOT take dad's place in mum's life, she must learn to change, or move into residential care.
Make yourself less available. Start by putting the answerphone on 24/7. Your mum will hate it, but you can listen to her calls and YOU decide if it's urgent or can wait. YOU decide when jobs need doing. I had counselling to help me deal with a widowed, lonely, housebound mum. Once he taught me how to take control, without ever actually saying No, it completely changed my attitude to mum.
I was mum's care manager, not care provider.
Can I ask how old your mum is? Does she qualify for Attendance Allowance? Does she have over £23,000 and is therefore classed as "self funding"?
One of the things I found most difficult at first was being in charge of everything, but having entirely free choice. After 34 years of marriage, we decided most things jointly. Your mum might find this difficult too, so it might be worth saying to mum "You are in charge now", especially if she has some money but doesn't want to spend it!
YOU HAVE NOT LET HER DOWN. She is an adult and is responsible for her own well being. She is lucky to have you around at all, just think that if you lived further away, you running round her would not be an option.
As you have a husband, get him to play "Bad Cop". Get him to tell her that you have other responsibilities and she cannot expect more than one visit a week.
When did you last have a holiday? Go away together, tell Social Services and the GP that you are doing so. You cannot keep running round mum and a time away from you may make her appreciate you a lot more. While you are away, even if you can only manage a weekend, spend time with your husband working out where you go from here. What mum needs, how she can get it, without it involving you all the time.

[Judith_17081]

Hi, my Mum is 88 years old. She does have savings but self-funding would not be a problem. I have discussed carers with her in the past but it's always been a case of "I don't want strangers in my house" which seems to be a common thread on this forum. I think I have to accept that Mum isn't going to change her attitude so the only solution is for me to change mine. Take a step back and allow her to realise in her own time (if she ever does) that she isn't coping on her own and does need some outside assistance.
In answer to the question when did I last have a holiday - I went away for a week at the beginning of July, during which time we put her in respite care. She wasn't happy about this and just stopped eating and drinking resulting in the latest hospital and rehabilitation admission.
It's not easy to accept that you cannot care for your ageing parent, as they cared for you when you were young, however if this situation were to continue I fear that our relationship - which has always been a very close one - would simply break down entirely.

[bowlingbun]

We lived midway between both sets of parents, in laws in one direction, mine in another, all within a radius of under 6 miles.
All had lived through "the war" and I'm sure this affected their thinking throughout the rest of their lives. "I can cope" was an often used phrase, but the truth was they all USED to cope, and were all in complete denial about what they could actually do. In the end we nicknamed ourselves the "Thunderbirds" ready to act with a moment's notice.
Father in law was still "saving for a Rainy Day" when he was 86, unable to walk more than a few yard without getting out of breath!!!
My mum was still saying she would "cope" even when she was bed bound and couldn't do a thing for herself!!!
So don't think it's just your mum, it's almost everyone's mum/dad. In their heads we are still their children, as indeed we will always be, but we are now adult with lives of our own, not children to do whatever they want and tell us to.
We can't give them the one thing they want most, their youth and vitality. They forget that we are getting older ourselves, I'd like my youth and vitality back as well.
They are too old, too set in their ways to change willingly. They will only change when they absolutely have no option but to change, because they like things as they are, and any change is difficult.
With your husband try to work out a new balance so you both have quality time together. I very much regret that we were so busy looking after our respective parents that we neglected our own health, and paid a terrible price for doing so. Don't put things off "when mum has gone". These years are so precious.

[Sally_17031]

I don't have much to add other than to urge you to take the advice and support offered here and take that important step back. I have done this and it has been hard, but things are so much better now.

Things had been pretty awful with my parents for around 6 years, causing huge amounts of stress and worry. We were at crisis point often and I gave up my job partly as I couldn't cope juggling my parents needs and 2 young children with work. They increasingly came to rely on my sister and myself for pretty much everything other than day to day personal care and it was becoming increasingly obvious that day to day care was becoming an issue too. We were (and still are) their only source of entertainment as they had never bothered to seek out and maintain friendships etc. However we were always deferring to "what they wanted" I,e no carers, no respite, no support groups and this was just exhausting. I felt constantly guilty. It I was not visiting, I was feeling guilty about not being there. Despite it being an hour round trip with 2 small children often crying in the car. After another crisis when Dad was admitted to hospital and I had to drop everything and ask a neighbour to pick my kids up from school as my husband was two hours away. I finally came to the conclusion that what they "wanted" didn't matter anymore, what was needed to keep them safe was more important. As were the needs of myself and my sister. With much support from this site I haven't looked back.

Dad is now in residential care. Mum has a diagnosis for dementia and carers coming on days my sister and I can't. My sister and I have a schedule of what we can do and when we will visit. Mum and Dad don't like all the changes, which I can completely understand. But if we had gone on as we were my sister and I would have genuinely been in early graves. And we are now getting to a point when we can go out for lunch with Mum and do nice things rather than it all just be drudgery and dread of visiting and what we would find.

it is a massive mental step to see yourself almost as their parent rather than the other way around. But once you do things will improve. It has taken 6 months to get here, but I am now looking for a job, the first time I could consider this for 6 years!

Please take care of yourself, your job and your relationship. You can do this.

[jenny lucas]

Wise words from Sally! Please do heed them.....

You say you feel you've let your mum down, but YOU CANNOT 'fill the gap' her husband has left. Like BB I'm widowed, and we know we cannot and must not use our children as 'substitutes' to fill the empty space in our lives. It's not fair on them.

Bottom line, we are all responsible for our own happiness, and that is that. Your mother must accept what fate has handed out to her, and cannot use you as an emotional sticking plaster, it just isn't fair on you. Was she the kind of wife whose husband always 'cossetted' her, I wonder? If so, I think women like that find it very hard to be 'without their crutch' and simply expect others to rush to their 'rescue'. Maybe I'm being unfair here.

Grief, as I said, is devastating, but it is private, and has to be. Is she on any kind of anti-depressant medication that might help to lift her mood, or at least dull her pain?

As for not wanting strangers in the house - if we all here had a fiver every time a member said that about their parents we'd all be rich!!!! it's SOOOO common. But it has to be ignored.

Your mum's choice has to be not 'my daughter or no one' but 'outside carers or no one'. While you do the caring, she won't willingly accept anyone else. You will have to 'play hardball' alas, and expect protests - either tears or recriminations - but you have to hold firm.

Work out with your husband what you ARE prepared to do, and then stick to it. You don't have to cut your mum out of your life but you do have to insist that the caring is shared with professionals.

And you have to accept that you CANNOT 'make her happy'. So often we want other people to be happy as that makes life so much easier for ourselves! it gets them 'off our backs'. But you can't make your mum happy, only she can, and she is unlikely to at this stage perhaps? That said, a friend of mine warned me that it would take at least five years to 'accept' widowhood, and she has proved right.......

But that doesn't alter the fact that you are not responsible for your mum's happiness, and cannot make her happy anyway.

[Sally_17031]

Bottom line, we are all responsible for our own happiness, and that is that.

...you are not responsible for your mum's happiness, and cannot make her happy anyway.

To me this is the ABSOLUTE crux of the matter and was a lightbulb moment for me. I wanted to post again as I have literally just put the phone down to a miserable mother. She is low and lonely and angry. Six months ago I would have loaded kids (who are happily playing upstairs looking forward to going to the park to walk the dog and have already seen granny once this week and will be seeing her again tomorrow) into the car to go over for a cuppa instead of walking the dog as we had planned. I would have had a miserable afternoon with my unhappy mother, but my mercy dash would not have cheered mum up, and indeed she would probably have forgotten about it the next day and in the process I would have made my kids and myself miserable. I would have come home and dwelt on my inability to make her happy and felt guilty and not enjoyed time with my kids. They would have had something rubbish from the freezer for dinner and I would feel bad about not having the time to cook something proper. Then once the kids were in bed I would probably have spent the evening crying to my husband about it all, whilst the dog chewed things because it hadn't been walked.

New me has sympathised with my Mum about being unhappy, she has newly been diagnosed with Alzheimer's having cared for my very unwell father for 10 years. This is pretty rubbish deal, I get that, she has a right to be angry and low. But I acknowledge that nothing I can do or say changes this. And IT IS NOT MY FAULT. On the phone I made the plan to go shopping and out for lunch tomorrow with her. And I will do my level best that we will have a nice day then. And I will continue to try and get her some more emotional support and make a note to speak to her consultant about the depression and anger. I know she is safe and fed as the carers have been in today, so I won't feel guilty. I am doing my very best by her as is my sister. So I am putting Mum back in the "Mum box" and I will enjoying the dog walk and time with my small children (until they moan about their legs hurting...).

In BOTH scenarios my mum is unhappy and I hate that, but at least in the new scenario she isn't taking me, my kids, husband (and dog!) down with her. Bottom line is you can run yourself ragged and it STILL doesn't make things better for your Mum.

[bowlingbun]

Well done Sally. As a mum, your first responsibility must be to your children, they deserve a happy childhood, which goes too quickly. It would be so sad if they looked back with sadness on their childhood, regretting things they couldn't do with you as you were "too busy with Granny". Make a real effort to give them lots of happy memories, fun and laughter. Sadly, mum may not be capable of being truly happy now.
I tell my eldest son, now 40, that when I'm gone I want him to remember be as the slightly mad crazy mum that drove his tractor home for him on Christmas Eve, (he was too young to take his test) being towed by his dad's Land Rover, when it was so cold I was dressed up like Michelin woman with a scarf covering my face like Lawrence of Arabia!