New to the forum - finding a balance

[sophie's choice]

Hi all, I'm new to this but after 5yrs (and counting) of caring for my mum I feel like I am at a breaking point and wondered if anyone else is in a similar situation... in 2011 at the age of 52 my mum suffered a devastating stroke which left her paralysed on her right side and with limited verbal communication. My dad was unable to cope with the level of care mum needed all of a sudden and to cut a long story short, she now lives permanently in a care/nursing home and he has moved away to live with someone else. As mum is in a home her basic care needs are dealt with, however myself (30) and my sister (34) visit daily between us while also having demanding full time jobs and personal lives to fulfill. I also take on a main role of trying to get mum out and about at weekends to make sure she has a change of scenery, fresh air etc. Mum's overall interest in life has decreased dramatically, she is pretty much bedbound and refuses to have the curtains open in her room or watch any TV, which would offer her some relief to her day to day routine. She becomes very distressed often and is sadly becoming less and less of my mum which is incredibly hard to see. Rightly or wrongly, this is where we are at and at this stage I am looking to find a balance with caring, for the sake of my own life, relationship and job. I have discussed reducing the number of times I visit in a week but she has a very bad reaction to this and gets very upset. I constantly feel guilty that I haven't done or cannot do more to help her and at the same time i feel angry that she is not wiling to help herself by being interested in doing different things other than laying in bed. I suppose I am just looking for some similar situations as it is very hard to find people of my age that can relate to my own story. All of my friends are getting married and having children and I am scared that the rest of my mum's life I am going to be living this routine, feeling guilty when I am not with her and resentful when I am. Sorry if this is rambling on! Any thoughts or even sharing experiences would be a comfort right now as I am feeling very isolated and alone in my thoughts for the future.

[bowlingbun]

The nursing home should be meeting mum's needs, both care and social. Visiting every day is not a good idea, give up any idea of mum agreeing to change! The only power mum has is the power you let her have. Tell her when you will be visiting, or say tomorrow I'm doing... so I'll pop in and see you on.... You have every right to a life of your own too. If she wants to stay in a darkened room, that is her choice I'm afraid.

[jenny lucas]

Sadly, BB is right. Only your mum can decide to be happy. You can do nothing. You can't cure her, and give her her old life back.

Being deserted by her husband must have hurt, and badly, surely? That said, perhaps your dad gave it his best shot, but she was too sunk in gloom.

It does sound, not unreasonably, as if she might have depression? Given how much she has lost, at such a young age. Her youth (relatively speaking), must surely make her much younger than the other residents?? If so, no wonder she doesn't want to socialise.

Can you identify do you think just WHAT she is so low about? That might sound odd, but is it 'just' the effects of stroke, or was she always 'depressive' (a glass half empty person).

Do you feel that 'everyone' (docs and herself and you) have 'given up' on any physical improvement post-stroke? Do, please, always remember that what can be untreatable at one point in time, can become treatable with new research improving options. Would your mum, do you think, 'lift' her spirits if she felt that she might not be 'stuck' as she is???

In life, the awful choice that so many of us have to live by is 'Go on or go under'.....it sounds like your mum has decided to 'go under'.

[sophie's choice]

Hi guys, thanks for this I appreciate it.
Perhaps I should have offered a little background.... Even post-stroke mum was an extremely positive person and seemed to cope well with the new challenges life threw at her. Although she changed as a person, she had and even now still has pockets of her same personality and mannerisms, and for that I am grateful. My dad was a very difficult character throughout our childhood and mum seemed to be the only person who could control his day to day moods. He in the past has battled depression. Post-stroke he seemed to bury his head in the sand and was quite cruel and manipulating of mum's situation, which lead to her eventually leaving the family home for her own safety. Unfortunately she doesn't have that one companion any more that can spend a lot of time with her and i believe she feels very lonely as a result, hence why my sister and I pop in for 20-30mins a day so she sees a familiar face, but we both know that cannot continue long term. The other residents in her home are much older than her, so she has been reluctant to mix. Unfortunately we do not have access to a lot of funds to ensure that she is in perhaps the best type of home for her needs, however I am currently exploring other options as an alternative. I completely agree with comments that she isn't helping herself or how she spends her time is her choice - I have had this conversation with her countless times and I go round in circles trying to make/help her take little steps to improve her quality of life. It is just very hard to watch the mother you were so so close to become somebody you can no longer recognise. It is hard to loosen that tie, but I understand I must for my own health.

[Pet66]

Hi
I've tried twice to answer!
Your mum will possibly take more interest in the t v and activities if you reduce your visits.
For what it's worth, my lovely much adored husband is in a nursing home. Strokes and dementia. I've had to learn to reduce my visits in order to cope. Learn to kick the guilt monster. We are much older than you.
Please don't feel guilty at reducing your visits. You have to enjoy some life. Deserve to. Your mum is being cared for. You are important too !!

[bowlingbun]

Can I ask if the local authority or the NHS is funding her care? I'd be depressed in a care home for the elderly, and I'm 64! She should be somewhere which meets her needs, so if the home is ignoring her needs for some social interaction with people her age, that needs to be discussed with the funding authority.

[Elaine]

Hi Sophie and welcome,
A lot of what you describe mirrors my own experience (been there, bought the biscuits),with my mum, who died this year, BUT my mum was at least 40 years older than yours and her mobility and other problems were not caused by stroke but sheer old age really.(Also, I was an only child).
However like you I visited every day, spent hours trying to cheer her, entertain her, make sure she was eating/drinking and so on. My mum went into her Home at the end of April. She went because even with a good team of carers I was verging on collapse myself. However my Mum didn't settle in her Home, she was too old (99)and already past being able to adapt to the life or the change in her routine. The people in the Home advised me not to visit so often, so that they could get her to integrate and adapt but, like you, I couldn't bring myself to leave them to it. My mum was deteriorating before she went into the Home and she continued to do so until she died mid August. Since she died I have not been well myself. Just beginning to feel better and get some energy back. Sheer exhaustion after 10 years of hands on caring combined with the stress of worrying day after day after day.
My advice to you is to decide how much you trust the people in the Home. Look carefully at how the staff relate to other residents and what the other residents do with themselves all day. Are they sat round the edges of the room? Are they 'parked' in front of the TV? Do the staff chat and laugh with them or ignore them as long as they are quiet?
If you think, that actually it's a nice place with nice people who are obviously doing their best for their residents, then do as BB says and tell Mum you or your sister will be back in a day or two and let the Care staff do their job. Have a chat with the staff and ask them to try to encourage Mum out of her room. However if she refuses they won't be able to force her. If she refuses, then it is her choice, whatever the reason that she is making that choice. Do you think it could be a case of 'Look how unhappy I am. You can't possibly leave me here all alone'.
I was seriously considering moving my Mum to a different Home although the thought of starting all over again to try to find the right place was nightmarish. She deteriorated too quickly and too much for me to even start looking. Please remember that she was very old. The same age factor doesn't apply to your mother.
However if you don't have confidence in the Home then do look around again, for somewhere better suited to her. Somewhere that suits you in effect.
It's really horrible that your Mum has had this stroke so young. Poor lady. It's disappointing that your Dad has abandoned her for a better life of his own . I can imagine part of you is glad for him and part of you feels let down by him. Part of you is also trying to take his place in caring for Mum. None of this is your fault and there is no reason why you should pay for your parent's misfortunes. You should have a chance of your own life, just like they did.
Sophie, decide. Is this a good Home? Is it the best place possible for Mum? If so step back, grasp your own life and let them do their job. If not, find a better and ditto. You can't make Mum well again. You haven't much chance of even making her happy and content. What's the point in sacrificing possibly years of your life trying?
Your role is to make sure that she is cared for and by visiting regularly (NOT daily) that she is cared about.
Your priority is yourself.
Kindest regards
Elaine

[jenny lucas]

Hmm, I wonder if your mum saw her 'role' in life as 'being the only one who could manage your dad'.....and now that role has gone from her. It sounds a bit, sorry if this sounds mean about your dad, as if your dad liked all the attention being on HIM, and didn't like it when it was his wife who needed attention!??? Does that resonate at all? (I'm feeling my way here into family dynamics, and they are always complex and not always obvious!)

I do appreciate that funding is a big issue - it can't but be otherwise (my 92 .y.o MIL with advanced dementia is in a care home, self-pay, that is burning through the proceeds from the sale of her flat at the rate of a hundred pounds a day.....!).

BUT, it does sound like a nursing home for the very elderly is not the best place for a woman younger than me (I'm in my early sixties!) to be stuck in! I appreciate that stroke is usually an affliction of the elderly, but sadly, not exclusively, as your mum demonstrates - so I'm wondering whether exploring via the stroke associations/charities/support groups/forums where other middle-aged stroke victims go for nursing care/residential care, might be a way forward? If your mum were in a place that catered to her own situation - ie, middle aged stroke patient, do you think that might help her 'emerge' from the 'cavern' she's 'buried' herself in (not opening the curtains just HAS to be symbolic of her 'retreat')

I agree, alas, with Elaine's query as to whether or not your mum is saying to you and your sister 'Look how unhappy I am - you can't possibly leave me here on my own!'. You and your sister have become her 'lifelines'.....

May I also turn things around from the opposite perspective? Given your mum is a middle aged, divorced stroke patient (that's the 'given'), what would you and your sister like her life to be? You can't 'cure' her (though, as I said in my first post, please do keep a constant eye open for latest research, that her consultant - she does have one doesn't she? - might be willing to try out on her?), so it's a question of what is the best way now that your mum can live the fullest life her condition permits? Would you like it if she were back to her old positive self, taking an interest in the world, seeing a purpose to her existence, enjoying what she can, doing what she can, achieving what she can, and having a social life (maybe even, who knows, some romance again in her life?), and generally moving into becoming, eventually, a grandmother, welcomed and celebrated by her daughters and their new married families (eventually!

If you can have an idea of what, ideally, you'd like for your mum, then maybe that can serve as a goal to move towards, rather than, at the moment, fighting a 'rear guard action' about trying to sever yourself from the bad place she is now (mentally, not just physically)

[christina 17]

Following on from What Jenny has suggested, I wonder if the nursing home has any visiting physiotherapy or and occupational therapist.
If the nursing home doesn't, would it be worth suggesting this to the manager or else you can phone social services yourself and ask their opinion. (But I think you may need to be persistant in your request and stress the value in it)
The occupational therapists are supposed to provide activities and find out what could possibly interest the patient/resident, so as to increase their well being.
The manager could also ask the staff to take your mother out of her room each day for a short time at first, under the pretence of cleaning the room and maybe it could be increased, for your mum to have at least a change of scene.
I am sure it must be much easier for the staff to leave your mother in her room and that even if she is with older residents, there may be one or too residents that are quite chatty and would at least say hello to your mum and they would be please to see a different person too.
I do feel for you and agree that something needs to change and perhaps gradually reduce daily visits as others have suggested.

[sophie's choice]

Thanks all for your thoughtful and useful comments. Jenny your words on my dad resonate entirely and I think this is exactly how he felt when he had to be the one doing the looking after. My sister and I turned to him for support but he was not in a position to help and even attempted suicide as a cry for help a few years ago as a result of it all. I don't have complete confidence in the home that Mum is in now, I often get the impression that the staff do not fully engage with residents and I think that if a resident says no, as is often the case with mum, that they do not attempt to try again or return at a later time. She is much younger than other residents and I don't always feel there is complete regard for her space or personal belongings. Her clothes have often gone missing in the wash even when they are labelled correctly, her toiletries are at times used incorrectly and her room is quite often messy for no real reason other than lack of effort/interest I think. She is currently self funding but doesn't have access to a huge amount of money so I'm not expecting this to last long given the rates of care. I am currently looking at other alternatives but depending on her finances, I am unsure what happens when her cash runs out - is it worth looking for something more suitable now when in less than a year she may have to be transferred to a lower level home? I'd appreciate any thoughts from anyone on what happens when money does run out... Am I then liable to cover her fees on her behalf and would this affect me owning my own home, as I do currently? She was recently assessed for continuing healthcare however her application was unsuccessful, which is fine, but all I really want for her is comfort and contentment. I do have some issues with the home which I will arrange to discuss to see what can perhaps be done to improve her quality of life day to day. My dad has had some altercations with the owners in the past so I have often felt a little intimidated and uncomfortable speaking out. Sorry I seem to have a million and one questions to ask and every new post brings out so many new discussion points. I have always felt quite unsupported and alone, hence reaching out to the forum... I don't think mum is manipulating us in anyway to say 'I'm so unhappy' as she often wants to be left alone completely. I think she has just become accustomed to this routine we are now in. I worry about learning how to be me again as my own person and not as mum's carer as that will now take me out of my comfort zone.Thanks again to all.