Help, Dad's dementia is going to kill him and me

[ella24]

I am sure there will be lots of problems one of the biggest will be my SW asking dad in 4 weeks time whether he is happy live in the CH permanently of does he want to go back home.) I still can't understand why the option has to be offered to him at the end of the trial. All it is going to do is to cause lots of upset - again. Is is so very important that she asks the question, just so she can tick her box saying "done".

Hi Burf

we are just going through that process with gran (she's been in CH 6 weeks now). Our SW explained to us that she has to put together a report from several aspects - gran will actually have her chat with an advocate (as she has moved away from her SW), but the SW will ask family/carers, and the home for input too.

We found with gran's previous advocate that they actually were fairly gentle and indirect with their questioning of gran, and built up a picture of the situation rather than a black and white stay/go decision.... COuld you ask for that format instead?

I hope this helps a bit

good luck

e

 

[ElaineMaul]

Hi Burf,
Although I haven't commented in your thread very much, I have followed your story and been with you in spirit.
I am so glad your Dad's move has gone well, I truely am.

I do hope the SW doesn't ask him if he wants to 'Go Home'.

Getting my Dad to accept a move into a permanent Care Home will be our next major hurdle. All he wants to do is 'Go Home' from the assessment ward ..... except he was saying that even when he was in his home! (But as others have said, this is so typical ..... how do the SWs not know about it?)

Elaine

 

[burfordthecat]

Dads first 24 hours

Hi

I decided to ring the CH today rather than visit dad . Good job really, considering all of the "cat problems" I was having this morning. Well, according to the assistant manger Dad spent most of yesterday late afternoon and evening talking to all the staff, asking them if they had a car and if they did could they drive him back home as he really did not want to stay here. They managed to get him to bed, but he would not allow any personal care ...he was adamant that he could do it all on his own. No surprise that dad was up during the night again...wandering...looking for the toilet. The staff managed to get him back to bed and he was not aggresive

I asked the assistant manager if she thought that dad's behaviour was a problem. She replied, no, but let see how it goes over the next few weeks.

When will I be able to know for sure that dad will be allowed to stay somewhere and to stop worrying about it. I don't feel as though I am any where near this at the moment.

Love Burfordthecat x x

 

[Grannie G]

Dear Burford

I wouldn`t be surprised if all agencies are making a big issue out of this to secure your eternal gratitude.

 

[Chrissyan]

Burford I am so pleased for you, I know there are still problems with settling your Dad, but on the whole things are so much better than they were. Your Dad's partner sounds a gem & I am glad she has been around as an ally & to support you both.

 

[ChrisH]

Hi Burf
Glad to hear your dad survived his first night, even if he did go for a little stroll. Of course he'll be disorientated and it may take him quite a while to find out where the loo is. Is it well marked? Do they leave the door ajar and the light on at night or do anything else to make the place obvious? I've written elsewhere about the problems we had with mum and the loo over Christmas - never did find her way from the lounge to the loo on her own in 6 days.

When the SW and OT went to assess mum at the respite home I was told that they did ask her if she wanted to stay there or go home. However, I was told that in order for her to be assessed as having mental capacity to make that decision she would have to understand the choices she was being given and retain that information for a period of time and recall it a bit later, and she wasn't able to do that. Surely your dad's SW isn't just going to say 'Do you want to stay here or go home', and your dad could say 'Go home' and that would be that. Surely they are taught not to accept the first answer that's given. If not I'll lend you my phaser and it won't be set on 'stun'.

Chris

 

[ella24]

When the SW and OT went to assess mum at the respite home I was told that they did ask her if she wanted to stay there or go home. However, I was told that in order for her to be assessed as having mental capacity to make that decision she would have to understand the choices she was being given and retain that information for a period of time and recall it a bit later, and she wasn't able to do that.

We had exactly the same thing with gran.

When I spoke to grans SW this week she said that even if gran was saying that she was 'going home today' (which she does say most days), if, when she was told that she wasnt going home she didnt get upset or distressed, and later spoke about being ok in the home and accepted it, then she would be assessed as being content and would stay....

For us though, there is no-one (from the family) available to provide day-to-day care to gran at home (she was 120 miles away) so SS would have borne the brunt of total care and responsibility.

I hope he's happy today

e

 

[burfordthecat]

Day 5 in CH - dad not settling

I visited dad this morning, with a few of his favourite pictures from home, for decorating him room with. He was not happy, he was pacing around when I went to find him. He needed to get a phone number so that someone could come and collect him and take him home. After quite a big effort, he allowed the handyman to put some picture hooks on the various walls and up went the pictures.

We then decided to sit in one of the lounges. One of the residents was not happy with me being there and voiced her opinion very loudly....about all these BL**dy visitors why don't she just F**k O** and leave us alone. Needless to say that did no do much to lift my spirits.

Dad is not sleeping much at night but is wondering around,normally, looking for someone to drive him home. He is refusing to change his clothes, have a wash or clean his teeth and will not accept any help under any circumstances. During my visits he is always asking me how long he needs to stay here and that he is feeling fine so that the doctor should send him home tomorrow.

I did think that having dad in a CH would help my stress levels. So far, it is not and I now carry to guilt burden around of having "put him away". He seems so very unhappy which in turn leaves me feeling awful. There is just no way that dad would ever accept being told that this is where he now lives but there is no way he could now manage to live on his own.

Love Burfordthecat x x

 

[WelshJeannie]

Early days, yet, Burford. My dad has been in CH for 4 weeks and is still making plans to 'escape'. He has taken all the pictures from home down and covered photos with a towel because he says it upsets him too much. I spoke to staff in charge yesterday and she said pretty much everyone goes through this sort of thing at the start. I'm hoping my dad will eventually settle and I really hope yours does too. I know what you mean about the stress. Like you, I thought it would be easier but it's not, the problems are just different.

Take it easy. You've done your best. You can't do any more.
Hugs
Jeannie
X

 

[ella24]

Hiya

I do feel for you, you're not alone on this....

He needed to get a phone number so that someone could come and collect him and take him home.

When my gran first went into the CH (7 weeks now) we had very similar response, and we all felt like you.

2 weeks ago when visiting her, a new male resident was doing exactly what you describe here, (he even asked me for a lift to Scarborough). I then realised that gran had stopped doing the pleading (for want of a better word) after a couple of weeks (she is still packing - albeit very little now).

Gran has recently started to come to terms with things, if not exactly accepting them (which is probably the best we can hope for).

hope this helps a bit

e

 

[Skye]

Hi Burf

I'm sorry your dad is not settling. Give him time. You know he couldn't cope at home, he will settle, eventually.

Please don't let the residents upset you, I'm regularly sworn at by one of the ladies in John's unit -- but then so are the staff! The only time it's a problem is when my grandson is in, he's terrified of her, and screams the place down when she starts. Of course, that makes her even worse! 'Stop that ridiculous noise' is one of her favourites.

I know it's worrying for you, but it will get better.

Love,

 

[Grannie G]

Hello Burford

After quite a big effort, he allowed the handyman to put some picture hooks on the various walls and up went the pictures.

Regard this as a big positive.

Is there another sitting room/lounge where it might be quieter?

It`s really upsetting having strangers shout and swear at you, I know.
When Dhiren was in the assessment ward a woman kept shouting `Help!!` and Dhiren shouted back at her, `Shut up!!` and it really did seem like bedlam.

Just try to hold on to what Jeannie, Ella and Hazel have said. I know it`s really awful for you now, but it will get easier.

You are on the homeward straits . It will never be good, but the alternative would be even worse.

Love xx

Sorry Hazel. Presed the wrong button.

 

[julieann15]

Hi Burf
It is early days- you and I have both read on here about it taking weeks/months to settle- the ONLY way your dad is going to go home is with an intensive care package which we all know he will not ever agree to so to all intents this is where he is going to stay- (unless he digs his way out??)
The lack of washing, changing of clothes etc may be his way of rebelling against the system?

Hang in there- you are doing the very best for your dad- may not feel like it now but you have all of us behind you

Love Julie xx

 

[Tarika]

Settling in

It's so hard to see your loved ones disorientated and unhappy. I so envy people whose LO settle into care homes quickly . My mum has been in her NH since July, and whilst far less agitated still hasn't come to terms with it. Would I? Would you?
The only thing you can say to yourself is that you are making the best of a 'bad job' (quote from friend who cared for her mother for 3 years then had to put her in a NH for 3 yrs).You know that your dad is safe and that must be a huge relief for you.
No solutions just understanding from someone who is there at the moment.
Love Tarika

 

[Canadian Joanne]

Hi Burf,
My mother packed everything every day for about two months. I would go every work day after work, find her standing at the door with big plastic bags stuffed with her clothes and just say "Not today, Mum. Maybe next week." and unpack all her stuff.

Your dad is very discombobulated and it can take quite a long time. I had the "Where's my car?" for months - it nearly drove me insane.

Hang in there. It really does get better. At least now you don't have to worry about his personal safety, do you?

 

[burfordthecat]

Thanks everyone for your support

Hi Jeannie

Thank you. It does give me comfort confused to hear that there are many of us going through the same challenges and stress with our loved ones.

I do hope that your dad settles soon and that we both can have a calmer time of it.

Hi Ella

I hope that you don't mind me asking, but I note that your gran has been in the CH for 7 weeks. Am I right in thinking that she has agreed to stay or that the SW has deemed her not to have mental capacity, so is staying anyway. I know that my dad is only being given a 4 week trial after which a decision will have to be made.

Dear Hazel, Sylvia and Julie

Thank you. You will not be able to believe how much your support helps me. To get reassurance that I am actually doing the right thing by dad is priceless.

Hi Tarika

Your words are so true. Yes, I am relieved that dad is now safe but I also want him to be happy and content and he is not, at the moment. All that I can do, at the moment, is to be there for him and hopefully in time, he may find happiness and contentment again.

Hi Joanne

Sorry to hear that you had such a hard time of it with your mum. Do you think that their personalities prior to AD have any bearing? My dad has always been very stubborn, independent and proud. It seems to me that this disease has just made these characteristics even more noticeable

BTW, you got me tonight, I had to look up "discombobulated " Great word, it evens sounds fantastic when you say it out loud.

Thanks again all of you for your support.

Love Burfordthecat x x

 

[Canadian Joanne]

Hi Joanne

Sorry to hear that you had such a hard time of it with your mum. Do you think that their personalities prior to AD have any bearing? My dad has always been very stubborn, independent and proud. It seems to me that this disease has just made these characteristics even more noticeable

BTW, you got me tonight, I had to look up "discombobulated " Great word, it evens sounds fantastic when you say it out loud.

It does seem that AD can intensify personality traits. My mother always was as stubborn as two mules. Once she developed AD, she made mules seem the sweetest, most docile of creatures. But that was during the early and moderate stages, things have changed quite a bit now. But she still gets a glint in her eye!

On the other hand, I have heard of people's personalities doing a 180º change - lovely, sweet people becoming really horrible and nasty people becoming pleasant for the first time in their lives. Of course, these changes can go back & forth a lot. It certainly keeps us on our toes.

Yes, I love the word "discombobulated" - it's one of my faves. I learnt it years ago and use it at every opportunity.

 

[lesmisralbles]

Hello Burf

Not adding anything.
Just sending love and understanding

Barb & Ron XXX

 

[burfordthecat]

Not adding anything.
Just sending love and understanding

Barb & Ron XXX

Hi Barb & Ron

Thank you, for caring.

Love Burfordthecat x x

 

[ella24]

Hi Ella
I hope that you don't mind me asking, but I note that your gran has been in the CH for 7 weeks. Am I right in thinking that she has agreed to stay or that the SW has deemed her not to have mental capacity, so is staying anyway. I know that my dad is only being given a 4 week trial after which a decision will have to be made.

Hi Burf,

ask away!!
Gran is deemed to have some mental capacity, but can't rememember decisions made (probably 3 minutes of short term memory).

The SW and her appointed advocate said that if gran came up with the same decision more times than other decisions then they would take that as the outcome.

Gran agreed (probably 70% of the time when it was discussed) to a 4 week trial stay, so we started the process with SS. The CH also were keen on 4 week trial for each party so they can assess needs etc, and we were fully prepared for it not to work out.

Initially we talked to gran about 'just a trial, just a few days, see what you think'.
It then became 'no you're staying till x birthday/next week/the end of the month' - extending the time frame slowly.
To begin with gran was upset, but the upset was quickly forgotten. Then gran started to accept (albeit grudgingly) that she was 'in the best place'
After 10 days / 2 weeks or so, the CH said they would be happy to keep gran, despite her confusion, (actually they said they had big concerns about her returning to live alone) and the CH asked if they and we could then start saying to gran 'no, you're staying here, you decided to stay'. When gran is told this (she asks every day), she is now accepting it, and is not upset.
The CH manager told me today that gran had asked 'how long am I staying?', was told 'you're staying' and replied 'that's good cos I like it here'.

The SW has told me that there is a 4 to 6 week review of the situation but the SW likes to leave dementia patients in CHs for the longest period possible before review. As gran moved out of the area, the SW is using a local advocate to talk to gran this week to find out her views (but NOT a decision), but is also preparing her report with input from the CH team, and other family members.
The SW has been told that if gran were to return to her home that her previous care arrangements with a family member would not be continued, and so SS would have to find all care to support gran. SS have pretty much accepted that this is now a permanent move.

Does this help - please let me know if I can help more..

e