Problems sorting out a companion.

[Gillian_160212]

Oh will I ever feel that things get sorted without a struggle ?

My sister's and I are still trying to sort out a 'companion' for mum who has Alzheimer's (but still thinks there is nothing wrong with her).
It was initially discussed while she was in hospital almost a year ago but she was discharged before anything was put into place due to it taking so long to be linked with a Social Worker. (Mum was in hospital for 11 weeks and we were only linked with the Social Worker in the last few weeks before mum's discharge - which had being delayed because of it).
It was initially decided that care would be in place for when mum came home to me to bridge the gap from me leaving to go to work each morning until one of my sisters come to be with mum and also for a couple of hours at the weekend to give me a break.
Great ...... or so I though. The ward had become so chaotic that it was agreed mum needed to come home but that was before there had being time for care, direct payments or anything to be organised.

Finally things got sorted with Social Services and we were recommended to a care provider. We told them the hours we required (the important times were Monday - Friday 8am - 10am and possibly 2 hours on a Saturday morning) were linked with a lady who was introduced to mum and who began to visit. Now if this had of being started when she first came home from hospital I think mum would of accepted it better but because a few months had passed and she felt she didn't need anyone it made the situation almost unbearable. So after discussing it with the mental health nurse we decided that we needed to be postpone these visits.
Now I will admit we have probably left it longer than we should of to try again but we sort of got into our own routine between us but it has always being a nightmare for me and mum when I'm leaving for work in a morning with her getting angry, frustrated and upset .
So the care provider was approached again (via one of my sisters to relieve me from some of the pressure of sorting everything out) about trying with a companion again STRESSING the times we required. So we linked with a lovely lady who has being meeting with mum and my sister for coffee once a week now for a few months. This is going quite well although mum sometimes likes her and sometimes doesn't . Then we thought it was time to start the lady visiting mum at those 'important' times only to discover that she is actually unavailable at those times and always has being !!!! So why link her with mum ?

Last week my sisters and I discussed how difficult it is getting in a morning and we decided we needed to get it sorted with someone who could do all of the hours we require (it was also stated in the beginning that mum would be more accepting of just one person not different ones during the week). My sister got in touch with our co-ordinater from the care provider and went over mum's needs and that we need someone quite quickly (we are just going to 'bite the bullet' and tell mum this is what's going to happen in a morning). He was quite enthusiastic and said he had just the person. A meeting was arranged for Monday afternoon this week so I took time out of work to meet the new lady along with my sister before she is introduced to mum later this week. It seemed to go ok except that this lady CAN NOT do Tuesday's as it's her day off !!!!

Aaargh .......... when will this man ever listen to us !!!!!!

I am mad with myself for not saying something there and then and I don't know why I didn't but I just didn't think, but when I got home from work I realised what he had said and that's when I started to get cross.

I know it's not going to be an easy few weeks while mum gets used to someone visiting her but on top of that we still have the problem of Tuesday's. What does this man think will happen on a Tuesday ? Will mum suddenly be fine on this day ?

I feel at the end of my tether with it all ......... working full time and caring for mum is the hardest thing I have ever done in my life and I could do with just once someone listening and trying to make life easier instead of causing more stress.

I just felt I had to get it off my chest as no one seems to understand the pressure of it all

[jenny lucas]

Well, we here understand it!

The bottom line, caring for someone with dementia of any kind 'eats' our lives. It's harsh, but true. Trying to keep a full time job going is all but impossible and certainly exhausting.

May I ask if these people you talk about are volunteers, or are they paid care-workers? If the latter, who pays for them, your mum, or the council/SS? (NOT YOU!)(YOU have no legal responsibility for your mum's care whatsoever!)

If they are volunteers (via a charity?) then I would say you simply have to take what they are (kind enough!) to offer. If, however, they are being paid, then 'you' (ie, your mum) are the 'customer' and you can say what you need and expect to get it (if available!).

If they are volunteers, but can't cover the times you need, can your mum pay for her own care workers (if her savings/ assets are low enough, she should not have to self-pay) to come in an look after her while she is at work?

I'm afraid it doesn't matter two hoots if your mum doesn't want them! The choice is stark for her - she accepts care-workers during the day, while you're at work, or she has to go into residential care. You cannot (AND MUST NOT!) give up your job to look after her, Demetnia requires 24x7 care, and will only get worse. Care homes have teams of people to share the crushing burden of being 'on duty' 24 hours a day, every day of the year - that's why a single person, even maybe two! , stil lcan't do it. (My SIL just managed to keep her mum out of a care home - but there wre six family members in the Care team, and it was still a nightmare!)

Like I say, everyone here on this forum has a Carer's T-shirt, so yes, we know all about how incredibly difficult and frustatating and exhausting - and just downright SAD - it can be!

[Gillian_160212]

Mum's care is paid for by Social Services through a direct payment which she was allocated after her stay in hospital last year. I have spoken to our Social Worker a few weeks ago and we have realised the amount of money mum receives for her care won't actually cover her needs but she has told me not to 'worry' as when the care is sorted the budget can be increased to cover mum's needs. She has always being in agreement about the times of day care is required for mum.

The care is provided by a company who have a local office but who also provide care through out the country. The ladies who we have met that work for them all see very nice and caring and understanding of mums needs. If only we were linked with a lady who actually works the hours we have stated !

What adds to the difficult situation is that due to me feeling so down and depressed last year the professionals involved suggested my sisters deal with the organising and contact with the company and the financial side of things. They have both being wonderful . But it has put my sister under pressure too as they are now making her feel like a failure as every time she tries to work with them to get things sorted a problem like this happens. The last thing I want is for it to cause tension with her too

She is in a dilemma now as to what to do today but has said she will ring the man at the office to talk to him. When things are not going right she has the feeling that he will think we/she is messing them about when actually these problems over the past months have being down to him !!!!

And yes it has got to the point where I know mum won't be happy with people coming to see her at her house every day but it will be happening whether she likes it or not as it is for her benefit to keep her happy and safe (and for my sanity too)

[Bridget Leech]

Ideally it would probably be better if you could advertise yourselves for someone who is qualified in Dementia care to come and look after your mother. They are out there but often difficult to find.It could be some one who works in a Dementia nursing home who would prefer to work less hours in a personal situation and they become part of the family. I did that with Direct payments and a 55.5hr/wk package, I did the rest personally as I was retired, but it did mean advertising in the local Employment office, interviewing, taking up references etc I was lucky in that I got good support from my Care Manager(Social worker) and the Coalition for Independence office did the tax and NI(pension also now I think) After 2 yrs of Agency I used that for the next 6yrs until my husband died.
It is important to keep your mother on a strict routine(like a 2yr old), keep her doing things she likes and move the subject side ways if it isnt feasible. Not easy.
I feel for you.Just deal with what you can at the time, but tell professionals how it is and dont feel guilty about it.
Good luck

[Elaine]

Hi Bridget
One person to visit Mum was never a good idea. Far better two people. There's illness, holidays, family crisis, family weddings, days off, car breakdowns, sick children and all sorts of reasons why one person cannot attend. With two, there's at least a chance that the other can cover. It would be better if you asked the agency to split the days between two carers, having discussed the possibility of one covering the other 'just in case'. Mum will get used to two new 'helpers' eventually and might even look forward to the mid-week (or whatever) changeover.
Elaine

[Gillian_160212]

Mum's new 'companion' started to visit her last week. She has only being five times so far but it seems to be going ok .
Mum did tell me last week after the first day that she didn't want her coming to her house again but I told her that she is a very nice lady and she will be coming again to keep her company because I know she doesn't like to be on her own.

Mum was dreadful this morning after we got up, by 6.55am she was banging really hard on the front door shouting, "Get me out of this place !" all because I was getting ready for work. She was asking me loads of times who was coming today and I kept replying calmly that my sister was coming to take her out but mum was so wound up she couldn't concentrate on what I was saying so she kept going back to banging on the door I am very luck that I have very understanding next door neighbours !

Then as if by magic just before 8am the carer arrived and mum happily and calmly let her in. She was lovely with her but at the same time she was telling her that she didn't want to talk to me and she hated me (it's a good job I don't take offence !)

It is lovely for me to be able to leave for work knowing mum is safe and not worried because she is on her own. She doesn't even come to see me out of the door and shout and swear at me as I leave now, something I have become very used to !

I do agree now about a second person visiting mum on a Tuesday so we also have a back up for holidays and sickness etc it's just hoping the agency can find the right person to cover that day.

I feel that for the first time in ages something positive at last is happening with support for mum (and me). We just need to make sure we keep something going during the school holidays when I'm off work for consistency for mum and so I can get a little bit of 'me time' but I'm hoping we can have the visits a little bit later as 8am is a bit early for me to have to get up and go out every day !!!!

[Anne001]

Gillian,

When I was caring for mum, I had exactly the same problem. I too worked full-time and, to add to the woes, I am an only child. In addition to the care visits arranged through Social Services, I paid for a dementia befriender organised by Age UK. They were very reliable but mum hated them. I did pursue this though, telling mum that she was training them for old people who really needed them . It was lovely to know that for 2 hrs per week I could concentrate on work and not worry about phone calls.

Good luck, I know how difficult it is ...
Anne

[Jennifer_1607]

I am glad things were sorted out (to the extent they can be) for you. For D patients it is difficult to adapt to new people, so it is going to take time.