Fear for the health of my Dad (prime carer)

[Christinec]

Hi,
I am so sorry to hear about your situation and having read your post I know you have already done so much and probably have for years. Although I have enormous respect for people who care for someone 24/7 not everyone can do this for a variety of reasons and dealing with this is difficult. lots of possibilities for guilt and conflict. Certainly agree with your statement about it feeling like one of the worst times of your life.

When my Dad was ill I said I had to have respite for Mum. We knew he could not go on (he had said this before he went to hospital) and I knew I would not look after mum long term. To be honest although I could have had a day or two as special leave I also knew it would not solve any problems as nothing else was suddenly going to get better. It does seem to me you have to say to Social Work, GP, Care manager and anyone else who will listen -"We cannot do this" and "You have a duty of care as mum cannot look after herself." Also you may find it helps to involve the Princess Royal trust for Carers or your local Alzheimers Branch as it is amazing how Social Work take carers with some back up and knowledge more seriously. Either of these organisations may have an Advocacy service who will be able to help you deal with this situation. Also if no phone call tomorrow get straight back on to Social Work and ask who is in charge and speak to them if you have to.

Social Work hould have a 24 hour emergency number and there is NHS24 although no idea how they would react.

Wish I could tell you it will all end happily - my Mum is now in a good residential home but I am waiting for the next crisis.

I used to dream about winning the lottery and being able to fund a private care manager and carers for care at home but you are talking about a lot of money - only time I would like to very, very rich.

As an earlier post says do not take "No" for an answer. Tell people there is no one to look after your Mum tomorrow night and she cannot be left alone. It should not be like this but it seems to me (and I was told by Mum's CPN that it would take a crisis to get care arranged although to be fair our situation was complicated - maybe it always is when two unwell people are involved) that nothing ever got done until a crisis arrived and if a family "manages" then the services are quite happy to let them for as long as possible. Too many demands on too few resources.

I really hope that you are able to get some solution and that your Dad's health improves and you are able to give some time and energy to other parts of your life.

Great you have brothers on board mine is hopeless and has done nothing however my husband and kids have been great

Take care

 

[hendy]

Dear Sue
I am so sorry to hear that you are having such an awfully traumatic time. Unfortunately, social services will let a crisis develop before intervening (I am sorry to sound so cynical but its from experience). Its sickening, I do feel for yourself and your family. All I can say is that get on to a senior social services person and scream 'crisis'. Insist that they take responsilbity for your mum and that she needs and urgent assessmet of her needs. I know that yur dad would not approve and as a family you feel that you have to cope with mum, but it does sound that she needs urgent professional intervention, it might only be temporary. It might hurt you to 'paint the blackest picture', but that is what you must do as a family to get the help you obviously need.
take care
hendy

 

[Keaf]

Hello Susan,
You're story has a very familiar feel. I to am struggling with decisions that we should not be making without professional help. I made a decision to bring my father home to live with my mother from a carehome after an initial assessment period. I wasn't told what the assessment was, but still had to make that decision. When you have you're mother asking you to 'please get him home', what do you do? Well I made the wrong decision. After 2 weeks there was no way my 76 year old mother could cope and so he has now returned to the carehome for another assessment.
It is an absolute scandal, that this is happening in 21st century Britain! I'm extremely angry in the way we have been treated and intend fighting for the recognition all this deserves.
And Susan there are incredible people whom I have eventually found. Once you get around all the ****, there are some absolutly amazing people ready to help you. You've just gotta dig for them. Google the 'Admiral Nurses' and book an appointment with them. They will put you on the right track.
I do apologise for my rant too!

 

[alfjess]

Dear Sue
I am so sorry to hear that you are having such an awfully traumatic time. Unfortunately, social services will let a crisis develop before intervening (I am sorry to sound so cynical but its from experience). Its sickening, I do feel for yourself and your family. All I can say is that get on to a senior social services person and scream 'crisis'. Insist that they take responsilbity for your mum and that she needs hendy

Hi Sue
I can only agree with Hendy. Get on to a senior SW and don't take no for an answer. Stress it is an emergency, crisis, whatever, make it clear that there will be no one available to care for your Mother, FROM NOW ON, she will be on her own and in danger.
They have a duty of care, they have to provide alternative care for a vulnerable person.

Take note of who you are speaking to and if they refuse care, say you will be holding them accoutable if anything happens to your Mum and you will be taking it further.

Very hard to do, I know, but unless you stress the fact that your Mum is in danger, then you will get no where in a hurry.

Be strong
Love
Alfjess

 

[SusanH]

Thank you everyone for your helpful comments and support. It has made such a difference to me in my hour of need - thank you. Mum is in a care home.

Social Services rang this morning to say there was a place, if we could get her there. If she wouldn't go we would have to go down the Mental Health Act route (I guess they meant sectioning). My brother spoke to the care home, who advised us to get her there on a pretext and we'd take it from there. So I told Mum I was taking her out to lunch (which I often do when I visit) and we turned up at the care home just as lunch was being served. Mum didn't turn a hair at the situation and settled down happily to eat her lunch, while the wonderfully kind nurse in charge showed me around. My brother and I then beat a hasty retreat. I don't feel at all guilty - I know she is safe and may even enjoy the company and the beautiful courtyard gardens. I would have liked to have expalined to her what was going on, but to do so would have distressed her, so it was better to just slip away. The nurse advised us not to visit for a few days to enable her to settle in. She may hate me when I visit, but equally, she may have forgotten all about it. Her room is beautiful and she will enjoy having an en-suite toilet and basin.

Phew! Relief...she has the room for a fortnight, or longer if she needs it. I popped in to see Dad to tell him what was going on and to give him the care home leaflet and he looked so much better. He was sitting up and had managed to walk to the toilet. Of course, he told me he felt dreadful and worse than yesterday, but the sight before my eyes indicated that he is deluding himself! Interestingly he seems a little bit confused himself, but I think that's the operation and the shock of everything happening so quickly. Hope so anyway - don't think I could cope with two of them with dementia....

Thanks again - this forum is a wonderful source of support.

Sue

 

[Grannie G]

Hello Sue

What encouraging news. It just shows how you can never presume with dementia. Your mother will probably enjoy the change and hopefully it will make life so much easier for all of you, especially your father.

Fingers crossed the `respite` will be extended to allow your father a full recovery.

Love xx

 

[Skye]

What wonderful news, Sue.

Well done to the SW for arranging it so quickly, and to the staff at the NH for understanding the situation.

And well done to you too, for getting it all sorted, as well as caring for your dad.

I do hope your mum settles, and your dad recovers quickly, so that you can have some time to relax and enjoy your family.

Love,

 

[SusanH]

Thank you ladies. I can't tell you how much better I am feeling - I think Mum is too. My brother rang to say he had contacted the care home and although she was a bit upset around tea-time, Mum was now settled in the lounge, having a lovely conversation with another resident. I know she will enjoy having company. Apparently she hasn't asked to go home once (which was a constant refrain when she was at home).

I will call the social worker tomorrow to say thank you. I didn't have to get heavy after all and really, they have moved quite quickly - it was just so frustrating when nothing seemed to be happening.

Sue

 

[hendy]

Dear Sue
That is such good news. Well done for getting it sorted. I hope that your dad is feeling much better soon and that he gets lots of rest, he must have really gone through so much. Let the professionals take over the care of mum, you will be able to care for her in lots of other ways. Both mum and dad will have a much better quality of life during your dads recovery.
take care
hendy

 

[Christinec]

I was very pleased to read your news and agree that you should thank the staff involved. I have nothing but respect for most of the people I have had contact with but sometimes I have had to be quite stroppy. I always thank them when things have gone as they should. I would hate to have their job.

Wishing you all the best.

 

[jenniferpa]

FYI - I believe it is now possible to use the latest Mental Capacity act to push someone into care, even if they are completely opposed to going without going the sectioning route. Now the cynical among us might think that this change is because theoretically, if someone is sectioned for any period of time, then inevitably the NHS would be responsible for their care, but I can't comment.

I suppose part of the problem you experienced is because LAs rely for the most part on placements in privately-owned homes, so until they know for certain a place is available, they won't commit themselves. Understandable, because a promise to help as much as possible might be interpreted as carved in stone by some people, but very worrisome for people waiting on tenter-hooks.

 

[alfjess]

Hi SusanH

Great news. Good to hear your Mum has settled and your Dad is looking better.

Well done your SS also and I am happy to hear. you didn't need to get heavy ----- It is so stressful

Hope can relax some youself now

Take care
Alfjess

 

[SusanH]

I 'phoned the care home today and apparently Mum is doing quite well. She had a bad 90 minutes after we had left yesterday, but has settled down. She didn't sleep in her room, but they were prepared for that and settled her down in a recliner chair in the lounge which is often used for this purpose. This morning Mum seems to think she is in a hotel and is quite happy. She said she'd like to order two breakfasts and would be staying in for lunch - oh, and could she have the same table as yesterday please? The second breakfast was for "Colin, my husband" which was sweet.

They are going to try to get her washed today and to change her clothing. I am so pleased she is with professionals - I now worry that she has been a bit neglected over the past 6 months or so, because she refused to let us help her. My brother is going to see her on Friday and I will probably go on Sunday. I hope she's either forgiven us, or forgotten by then!

Sue

 

[Grannie G]

Dear Sue

Try not to let it affect you whether or not your mother has forgiven or forgotten.

I know it`s easier said than done but your post was the most relaxed and positive I have read from you. Even in this short time there is an improvement in your family`s situation.

Your mother might find it easier to accept being cared for by professionals rather than family. Some people do.

Love xx

 

[Skye]

This morning Mum seems to think she is in a hotel and is quite happy. She said she'd like to order two breakfasts and would be staying in for lunch - oh, and could she have the same table as yesterday please?

I love that, Sue!

It sounds as if your mum is going to settle in happily, and even organise things to suit herself. Good for her!

I don't think you need to worry about being forgiven!

Love,

 

[gillian69]

Hi Sue

I have read your post tonight and feel for your situation, which feels very similar to my own.
My mother has been diagnosed with Alzheimers/mixed dementia and is currently taking Aricept( 2 years now).
My dad is the prime carer and also suffered a slight heart attack and has had stents!.
He is currently under a great deal of stress with mum, who is getting increasingly violent towards him, my parents are both 70.
We have just had a meeting with a support worker who is arranging assessments for AA and respite.
I really do feel for you and hope all goes ok, if you ever need to talk please get in touch.

Take care, going to see my parents this weeken, as we have a family christening, dad cant wait as i'm taking mum out!!

Gillian

 

[Margaret W]

Dear Sue

Two out of three doesn't sound bad at all. As an only child, always wished I had siblings, I can't get to grips with how some kids just don't want to know when their parents need help, and their siblings are trying to provide it. Well, it is dead easy when you have no siblings, no cousins, no nobody. Dead easy in that any decisions are yours, and no argument about it. Dead difficult in that you have to make those decisions on your own and bear the guilt alone. Guilt. Don't even ask me about it, cos I live with it every day. Why did I "put" my mum in a care home? Why didn't I investigate alternatives? Well, one person and one calculator and one brain is a bit lonely, I just did what I thought was right. The regrets have come since then. I hate myself for not investigating properly. I still have no idea if I could have done better for mum. I just know that she hates being in the home, and I don't know what to do. She is self-funding so about £20,000 has disappeared from her savings over the last 12 months, and fuel and heating costs seem likely to increase fees by about 15% next year, so if she lives for much longer we will be up the creek without a paddle, so to speak.

I despair. I wish I had some brother or sister to discuss it all with, but I have no-one. My two daughters accept whatever I say and do, but I feel so alone.

Sorry, this was your post, with your problems, not mine.

Forgive me everyone.

Margaret

 

[SusanH]

Margaret, no need to apologise at all. You raise some very relevant and valid points. My husband has been overseas during all this and I have missed him and his support so much. It has been tough, but at least I have my brothers to share the burden, so I feel very lucky. I found your post interesting because I have been reflecting this week that my daughter is an only child and when we get old and/or sick she would be on her own to deal with it (yet another thing to feel guilty about!!)

Don't feel guilty - we all have to make the decisions we feel are right at the time. I'm sure deep down your mum knows you are doing your best.

Sue

 

[Lynne]

Hi Sue

I'm so glad this thread has a reasonably happy ending (I know it's not an 'ending', but you know what I mean) but before I started this post I ran through the whole thread to re-cap.

The first 2 pages are an APALLING reflection on our 'Caring Society' and the services which are supposed to be available to us all in times of need.
Well done for staying strong & getting your Mum to where she needed to be, but it doesn't bear thinking about what happens to the hundreds of people who don't have a strong daughter/son (or whatever) to bulldoze through the bureaucracy on their behalf.
It isn't supposed to be like this.