Help!!!!!

[Louise.D]

My dads just died leaving me with mother who has AD. She needs 24 hour care and has got worse since he died three weeks ago. She has fallen three times in three weeks last time being last night. I have two kids age 7 and 4. Social Services are useless but coming round Monday. I've had to take a bank loan to pay for her personal care with an agency. I'm at my wits end. My kids are suffering, my husbands been great but running out of patience.

She's also incontenant both ways. Doctor won't help. Tesco pads are useless, District nurse dosn't want to know.

I've tried my local MP who lives two doors away but she's useless as well.

Can anyone help??

Where do I start???
What do I do???
Can't and won't put her in a 'home' as this was my last promise to my dad.

HHHEEELLLPPPP

 

[noelphobic]

Hi Louise

I'm so sorry to hear of the death of your dad and the problems with your mum. You say that your mum needs 24 hour care but that you can't and won't put her in a home. Unless she lives with you, or you with her, I'm not sure what the solution is. As I am sure you know, to pay someone to care for her 24-7 would cost an awful lot of money.

It would be a good idea to ring the Alzheimer's Helpline on 0845 300 0336. I am sure you will get lots of helpful suggestions here also.

Take care
Brenda

 

[Cate]

Hi Louise

My deepest condolences for the loss of your dad, and it seems you have no time to grieve with everything else going on.

It might well be that mums worsening symptoms could be attributed to the loss of your dad, she’s grieving to, and is probably very confused.

Was mum every assigned a Community Psychiatric Nurse, if not, go back to the doctor who diagnosed her AD, and request an urgent home visit by a CPN. You don’t mention if mum is on any medication for her AD, if not, raise that too.

Go back to your seemingly very unhelpful doctor and request that a nurse specialising in incontinence makes a visit and assessment.

Social Services, hang on in there until Monday. Before your meeting with the Social Worker you need to get your thoughts and needs down on paper, otherwise you may find its their agenda and not yours. I would clearly point out, that unless you get help with mum’s care you will be walking off into the sunset!! Sometimes Louise strong tactics are needed. You need to point out at mum is AT RISK. I would suggest that arrangements are made for carers to call into mum, however many times a day you feel she needs this support. Have you thought of meals on wheels for her. Could she go to a day centre a few times a week. Would she be able to use a personal call alarm, if you think she could manage this, request one, she may fall when there is nobody around. All of this will give you the time, and help so you can concentrate a bit more on you and your own family.

Finally honey, sometimes we have to recognise that we cannot always keep promises, you must think what is ‘best’ for mum, and best for you and your family. Everyone’s situation is different, sometimes ‘home’ isn’t always the best place for an AD sufferer.

Keep posting.
Love
Cate xx

 

[Louise.D]

Thanks for your advise. Social Services in Essex have advised me that they cannot help me as she has a residence in London, although she is not living there. They have changed their tune as previously they said if she was not receiving services in London then Essex social services would start from scratch.

Another problem is the finances, try asking someone with AD where their bank accounts are !!!!! I admit and accept that she would have to pay for her care based on the information that my dad gave me, but the lazy muppett at social services does not want to do any work just fobb me off.

I've ranted and ranted, but they are not listening. I've told them she's at risk, I've told them that she can fall, turn gas taps on etc. AAGGHH

The responsibility is huge. In the meantime the Agency are not returning my calls. I've kids to get to school on Monday.

Husbands been great!!

 

[Cate]

Hi Louise

I can only speak from my own experience. Mum used to live in Monmouth, no suitable NH for her there, so she has moved to a NH in Cardiff. She is still the responsibility of Monmouth Social Services. They just love making the journey to see her as you can imagine, but tough. Keep plugging away at it.

Love
Cate

 

[Kayla]

Dear Louise,
I wonder if it might also help, if you and your husband go to your own GP and tell him that this situation is affecting you and your children, and you urgently need help, so that the children don't suffer.
An extra push from your GP might just spur the Social Services into action, as your family is very young and vulnerable.
I do think you should reconsider the Care Home option for your mother, as you really do seem to have your hands full at the moment and she needs 24 hour care. The children should be your primary concern and there are many very good homes around nowadays.
Kayla

 

[Kathleen]

Louise

I am sorry you have lost your Dad and your Mum is in such a bad way, sorry for your young family too.

In the short term, if your Mum has another fall, why not call the GP or an ambulance and get her checked out at the hospital. It is a sad fact that unless you push really hard and shout very loudly, everything seems to crawl along at a snails pace when AD comes along.

Has your Mum got a specialist she is under that could help you get a bit of urgent respite while you sort everything else out?

You need time to grieve for your Dad and time to think clearly through all your options.

Having lost my own Dad who left Mum with AD, I completely understand the promise you made him, but if he were to see you now, would he really hold you to it? He would surely want both you and your Mum to be safe, loved and well looked after both of you deserve that.

Take care.

Kathleen
x

 

[suzanne]

condolences on your loss and situation, one small piece to help you,your GP could or rather should be prescibing incontinence pads for you mother, and you could also ask if there is an underlying reason for the incontinence such as water infection and chronic constipation. I do hope things get better for you.

 

[jenniferpa]

Dear Louise

I am so sorry for your recent bereavement, and for what you're going through now. Other people have already given you a lot of good advice, and I would echo the "he who shouts loudest gets the most help" sentiments contained therein. I just wanted to comment on the "promise" aspect of your post. Now maybe you can get things together sufficiently so that your mother won't need to go into a residential placement, but the only way this is going to happen is if she can have someone with her 24/7. Maybe not now, but down the road. Someone with late stage AD simply cannot live on their own: it's simply not safe. As I said she might not be at that point yet, but what I'm trying to get to is this promise that you made to your father may not be one that can be fullfilled.

This is going to sound very harsh, but this was a promise that should never have been asked of you. You have a young family to take care of, and I would venture to say that any loving grandparent would consider that their needs should come first. Perrhaps this is a promise you made without prompting: in which case it was an admirable attempt to give your father peace of mind at the end of his life. However, you know as a parent yourself, it is not always possible to live up to promises. Could you not look at the spirit of the promise, rather than it's content? You promised to take the very best care of your mother that you could: that does not necessarily mean not placing her in a residential situation. Some of us have found that such a placement provides for better rather than worse care.

I do hope I haven't offended you. Promises are important, yes, but your own health and well-being and that of your family are important as well.

Love

Jennifer

 

[dmc]

hi louise

looks like youve had plenty of helpfull replies so theres not a lot i can add except to offer you my condolences on your dads passing, i hope you manage to sort your situation out it sounds horrific.
good luck keep us all updated
take care
donna

 

[Skye]

Hi Louise

Like Donna, I've come to this too late to have any advice beyond what has already been given.

Just wanted so stress that you are so welcome here. You can choose what advice you want to follow, but the support you will get will always be sincere.

Let us know how you get on.

Love,

 

[Louise.D]

Thanks everyone for your replies. I've been in touch again with social services and shouted really, really loud. I also called on my neighbour who is an MP to put the boot in. I'm really upset as the first thing social services wanted to know was the financials and not welfare issues. I've suggested to the social worker the she questions mum about this as I know she has money but don't know where. I have arranged for a private nurse to come out to see her and get her washed and dressed so I can get the kids to school on Monday. I've also employed today domestic help, as the volume of washing is astounding. My husband and I will have to pay for everything until we can trapse her down every bank and building society to find out if she has accounts. Only then the EPOA can be lodged.

It was grim this morning, but looks like things are moving on, my grandmother was in a home for 15 years with dementia and I still beat myself up over it. I noted everyones comments about 'homes' I have to be realistic about this. Are there good ones out there? I've viewed one and ended up in tears as it was so terrible. The smell was horiffic. I give my mum a good wash once a day, set her hair in curlers twice a week. I dress her in nice clothes that match and make sure she has tissues, her handbag and matching shoes. The 'home' told me that they bath them once a week as they don't have time to do this. My dad used to take her everywhere, out to lunch with friends and they had a good social life. She needs stimulation and I don't think that she will get this in a 'home' I'm not even sure that I can provide her with what she need and I don't know what her neds are.

Although her dementia/AD is quite severe and she is severely disabled, she still has her pride and dignity. If I could find a home that you cater for this them I'm happy to allow her to go there.

Thanks again everyone.

 

[Grannie G]

Hi Louise,

I too have arrived at this Thread too late to be able to offer any advice other than the excellent advice already offered.

I`m so sorry you are left in this worrying position with your mum, following the death of your dad. I can only offer my deepest sympathy and sincere condolences.

I agree your dad shouldn`t have made you make a promise it would be impossible to keep. Your mum sounds as if she needs 24 hour care and with the best will in the world, you would be unable to keep it up in addition to your other commitments.

If you read the post from Mimi, I hope you will be reassured there are some very good care homes around. It just needs some time to find them. You will also find lots of posts, here on TP, full of praise for the care given in some homes.

http://www.alzheimers.org.uk/TalkingPoint/Discuss/showthread.php?t=6191

Take care of yourself and be realistic in what you can be expected tp provide for ALL your family.

Please let us know how you get on.

 

[Kayla]

I don't know whether this idea would be any help at all, but I've heard of a family who have employed an "Au Pair" from an Eastern European country to care for their mother in her own home. The carer also drives the family car as the father died last year. I don't think the mother actually has dementia, although she is forgetful, but she has been unwell and unable to look after herself.
I should think this is just a short term solution to the problem of caring, but it is another option to consider.
Kayla

 

[noelphobic]

It was grim this morning, but looks like things are moving on, my grandmother was in a home for 15 years with dementia and I still beat myself up over it. I noted everyones comments about 'homes' I have to be realistic about this. Are there good ones out there? I've viewed one and ended up in tears as it was so terrible. The smell was horiffic. I give my mum a good wash once a day, set her hair in curlers twice a week. I dress her in nice clothes that match and make sure she has tissues, her handbag and matching shoes. The 'home' told me that they bath them once a week as they don't have time to do this. My dad used to take her everywhere, out to lunch with friends and they had a good social life. She needs stimulation and I don't think that she will get this in a 'home' I'm not even sure that I can provide her with what she need and I don't know what her neds are.

Although her dementia/AD is quite severe and she is severely disabled, she still has her pride and dignity. If I could find a home that you cater for this them I'm happy to allow her to go there.

Thanks again everyone.

Yes, there are good homes out there. My mum has been in firstly an EMI and now a nursing home. She went into the first home when my dad had just died. She was in respite care in a council run home that was under threat of closure so Social Services put a lot of pressure on us to find somewhere else, even before my dad was buried. We were told she needed to be in an EMI home and there were only 2 local homes with vacancies at that time so we had to make a rushed decision. The first thing the home she went to asked about was finances, which still shocks me when I think about it now. However, that is possibly quite common. After a year in that home she broke her hip and then needed to go into a nursing home. She was in hospital for 5 weeks and again we were under pressure to find her a place in a home. However, we 'toughed it out' a bit more this time and took our time looking around homes. We 'viewed' a lot more homes this time around and agonised a lot before deciding on the home she is now in. We'd learned a lot when she was in the first home and that experience proved invaluable when looking for the nursing home place as we knew what to look for and what questions to ask. Unfortunately I didn't find TP until after we had been through all this. The combined experience of the TP members is phenomenal, in pretty much anything to do with dementia.

Whatever you eventually decide is best for your mum and the rest of your family, there will always be someone here to listen or offer suggestions.

Take care
Brenda

 

[Nell]

My Can't and won't put her in a 'home' as this was my last promise to my dad.

HHHEEELLLPPPP

Oh dear! I do wish people wouldn't expect others to be bound to their dying wishes! Of course your dear Dad didn't ewant your Mum in a home but I doubt very much if he would want what is now happening to you and your family either. The sad thing is, he can no longer say "sorry, I was wrong to expect you to keep her at home".

I realise you will wish to try everything possible before you consider residential care, but please, please, be aware that it might be unavoidable. Then make your peace with your Dad by saying "I tried hard, Dad. I really did. I'm sorry it couldn't work out the way you and I both wanted it to." Then forgive yourself, please.

This is SUCH a difficult situation to face, even without the promises you made your Dad on his deathbed. And please remember your children, your husband and YOU too have a right to a life.

Thinking of you and sending you caring wishes. Nell