[phpBB Debug] PHP Warning: in file [ROOT]/phpbb/session.php on line 585: sizeof(): Parameter must be an array or an object that implements Countable
[phpBB Debug] PHP Warning: in file [ROOT]/phpbb/session.php on line 641: sizeof(): Parameter must be an array or an object that implements Countable
Out of my depth - Carers UK Forum

Out of my depth

Share information, support and advice on all aspects of caring.
I apologise for the length of this and if it jumps about a bit but I needed to get all the salient points down. My mum was diagnosed with vascular dementia last year and we've sort of muddled our way along until about a fortnight ago. The 'we' in this is my husband and I with some help from my middle child who has taken her to hearing aid appointments (she is profoundly deaf) and the odd drive or two as well as spending time with her when his shifts allow. My eldest son has his own young family and my daughter lives forty miles away.
The memory clinic was only involved for the initial assessment, scan and final meeting when mum refused any help as she had us! She has gradually got worse over the last year spending most of her days half sitting, half lying on the sofa, eyes closed doing nothing. She would however get her own breakfast and lunch and load and unload the dishwasher each day. Now she spends all day in bed, does nothing for herself except, thank god, going to the toilet and cleaning her teeth although I walk the four or five steps with her. She washes once a week but won't let me help so it is done more often.
One of her continual complaints for at least the last couple of years has been that she has no energy, and she mentions it every time she sees a doctor. She has had blood tests, a chest x-ray (she coughs a lot sometimes bringing all her food back) and urine tests; nothing except the original diagnosis has ever come back as anything other than fine. On the 4th March she was prescribed Fluoxetine (20mg) and she's only got up and come downstairs for dinner three times since. I've had the doctor out twice during this time the second one an out of hours doctor as I wasn't allowed to phone the surgery on the Friday but really should do it on the Saturday!
Yesterday was her return visit about the antidepressants but she couldn't face it so I changed it to another home visit but the doctor phoned instead. I told him about how she was feeling weak and frightened and about the lack of energy and increased confusion. (She tells me the same things over and over, doesn't recall what I've told her most of the time and thinks she's been on the antidepressants for a long time) His response was to arrange for a reassessment with the memory clinic and to continue with the tablets. This evening mum asked if she had been told it was vascular dementia (which she'd remembered) or if I'd decided that was what it was.
Everything she does is a major effort, even having a drink of water makes her look as if I've laced it with razor blades and she chews each mouthful over and over. It took a couple of minutes less than an hour for her to eat a slice of toast, half a two egg scramble and a yoghurt this evening.
No one has any suggestions as to the cause of her lack of energy and I have no idea what to do next. My sister arrives from Australia on Easter Sunday and the plan was that she took mum away for a fortnight to a holiday cottage she's booked. I don't see that happening and instead of having two weeks with my husband doing what we want I can see us having to stay in the cottage so it's not wasted which neither of us want to do. Something else out of our control!
I am feeling totally useless and helpless, I don't know what to do next to get her some help and a better quality of life and wonder if anyone has any suggestions. I do know however that my children are going to put me into a home if I can't look after myself, I'll not inflict this on any of them.
Hi Tracy
I realise this may sound a bit pot/kettle etc but it really sounds as though you would benefit from some outside help, maybe just once or twice a week to start with.
It sounds as though your GP has fobbed you off a bit so if you are especially worried oabout your mum over the weekend it would be worth giving 111 a ring and pushing for a dr appointment or else jump up and down a bit at the surgery in the week.
It sounds as though you are approaching the stage where it is almost impossible to cope any longer so put some feelers out and look for options.
If you end up in the cottage, it might not be a perfect holiday but try an dmake the most of it and take some time out.
I think you should let your sister take mum on her own, so that she clearly understands the hopeless reality of your own situation. Yes, it will much up her holiday, but she will go back to a caree free life. You can't at the moment. I'm sure when sister gets back, she will have a far greater understanding of your situation. Don't give in an go! In the meantime, ring Social Services and ask them to do a Needs Assessment for mum, and a Carers Assessment for you and your husband. It is clear from the last part of your post that you recognise it is unreasonable to expect your children to care for you if you were like this. Before the cottage holiday, find out as much as you can about residential care homes in your area, specialising in dementia. Visit some, starting with the nearest to your own home, because the nearer you are, the easiest visiting is. Do you have Power of Attorney for mum? Do you know what her financial situation is? If she has savings of more than about £23,000 she will have to pay for her own care. Presumably she is in receipt of Attendance Allowance? Some care homes have a day service, so the carers can have some regular caree free time, and the caree can gradually get used to the surroundings. My mum had physical problems, and reached the point where she simply couldn't manage at home any more. She spent the last year of her life well looked after in a good nursing home, I could go back to being a daughter again, confident that mum was well looked after. Hope that helps.
Under no circumstances should you go on holiday with your Mum & your sister.

Your sister needs to experience, for a short time, what you experience all the time because with a wave of the hand & a sigh of relief she'll fly back to Australia.

The POA suggestion needs to be done & to be quite blunt, your sister doesn't have any right to be involved in any of the arrangements such as an eventual carehome etc so make sure you do what's best for you.
Henrietta wrote:Hi Tracy
I realise this may sound a bit pot/kettle etc but it really sounds as though you would benefit from some outside help, maybe just once or twice a week to start with.
It sounds as though your GP has fobbed you off a bit so if you are especially worried oabout your mum over the weekend it would be worth giving 111 a ring and pushing for a dr appointment or else jump up and down a bit at the surgery in the week.
It sounds as though you are approaching the stage where it is almost impossible to cope any longer so put some feelers out and look for options.
If you end up in the cottage, it might not be a perfect holiday but try an dmake the most of it and take some time out.

Hi Henrietta,
Thank you for your reply, some outside help would be lovely and now the memory clinic is going to reassess I will make sure it's noted that we do need help.
I called 111 last weekend and although their call back in an hour took over two and they sent a doctor highly allergic to dogs when I told them I have two he was very nice and stayed almost 30 mins! I do feel fobbed off though and I am going to make a fuss next week when I'm not helping with the school run.
I would hate to think I'm reaching the end of my tether I know I have it easy compared to many many others and I also know mum won't want to go anywhere so moving her on isn't an option.
As for the holiday atm I'm trying not to think about it and be positive that it will happen as planned.
Again thank you
Tracy
bowlingbun wrote:I think you should let your sister take mum on her own, so that she clearly understands the hopeless reality of your own situation. Yes, it will much up her holiday, but she will go back to a caree free life. You can't at the moment. I'm sure when sister gets back, she will have a far greater understanding of your situation. Don't give in an go! In the meantime, ring Social Services and ask them to do a Needs Assessment for mum, and a Carers Assessment for you and your husband. It eis clear from the last part of your post that you recognise it is unreasonable to expect your children to care for you if you were like this. Before the cottage holiday, find out as much as you can about residential care homes in your area, specialising in dementia. Visit some, starting with the nearest to your own home, because the nearer you are, the easiest visiting is. Do you have Power of Attorney for mum? Do you know what her financial situation is? If she has savings of more than about £23,000 she will have to pay for her own care. Presumably she is in receipt of Attendance Allowance? Some care homes have a day service, so the carers can have some regular caree free time, and the caree can gradually get used to the surroundings. My mum had physical problems, and reached the point where she simply couldn't manage at home any more. She spent the last year of her life well looked after in a good nursing home, I could go back to being a daughter again, confident that mum was well looked after. Hope that helps.
Hi BB,
Thank you so much for your advice, I will definitely be acting on at least some of it. At the moment we aren't going to the cottage, but if mum can't get there my sister did suggest we go in their place. Tbh I don't want to do that either, moany old goat that I am. We were looking forward to having our house to ourselves, going out to lunch or for day trips, no organising, packing or planning which was how life used to be.
Mum doesn't get attendance allowance as she wouldn't accept that she needed it. I have printed off the forms though and will get them filled in, plus I'll get in touch with social services, which my mum will hate, and get the ball rolling there too.
There is no way I'll get mum into a home, even the thought of a afternoon at a meeting place or club was turned down flat to start with and now gets her agitated so I am definitely in this for the long haul.
I do have power of attorney for health and finance but no real idea of her situation as the filing cabinet is kept under lock and key!
Her flat has been on the market for over a year and in that time her health has deteriorated so much that the planned extension is no longer suitable. Maybe this summer it will sell and we can look at a different set of modifications to help her.
Everything is so complicated isn't it?
caravanj wrote:Under no circumstances should you go on holiday with your Mum & your sister.

Your sister needs to experience, for a short time, what you experience all the time because with a wave of the hand & a sigh of relief she'll fly back to Australia.

The POA suggestion needs to be done & to be quite blunt, your sister doesn't have any right to be involved in any of the arrangements such as an eventual carehome etc so make sure you do what's best for you.
Hi CJ
Thank you for your reply. I am the main person in the POA with my sister second. I would be very surprised if my sister comes back again in the next three or four years so the decisions will be mine. If she doesn't like any of them she'll be welcome to come and take over.
If mum owns a flat, then should she need (as opposed to want!) residential care, then she would be expected to pay for all the fees until such time as her savings fall below £23,000 or thereabouts. If you have power of attorney, then you can apply for Attendance Allowance on her behalf, she need not even know. Do you know where the key to the filing cabinet is kept? One of the most difficult things about caring for an elderly parent is that you end up almost "parenting" them. Making decisions in their best interests. I struggled with various aspects of this, and ultimately had counselling. Worth considering.
bowlingbun wrote:If mum owns a flat, then should she need (as opposed to want!) residential care, then she would be expected to pay for all the fees until such time as her savings fall below £23,000 or thereabouts. If you have power of attorney, then you can apply for Attendance Allowance on her behalf, she need not even know. Do you know where the key to the filing cabinet is kept? One of the most difficult things about caring for an elderly parent is that you end up almost "parenting" them. Making decisions in their best interests. I struggled with various aspects of this, and ultimately had counselling. Worth considering.
Hi again BB,
I hadn't even thought about counselling but you're right it definitely is worth considering. The chance to talk without feeling guilty is a very tempting one.
I absolutely agree with you on the 'parenting' thing. I am now telling mum things she used to tell me and doing things for her I last did for my own children and grandchildren.
We had a difficult evening last night which included having to deal with getting her changed after she was sick all over herself and her first time wandering back downstairs after she had gone to bed certain she needed a phone to contact me on 'like other nights' when I think what she meant was the baby alarm. Each day atm is throwing up :shock: new challenges and difficulties, hopefully it will quieten down again soon.
I have the attendance allowance form to fill in an I'm phoning social services on Monday so fingers crossed.
If mum is starting to wander, there are electronic alarms available to alert you, I read about them in a CUK magazine a while ago. Social Services should have details for you, if not, ring the helpline.