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

[burfordthecat]

Hi Everyone

Well, today, we took dad's grandchildren into the CH to see him for the first time in 3 weeks. All went well, dad was really happy to see us all and our family nearly filled the "fish lounge" where dad has decided to sit. There was a lady in there who is 102 and my daughter was happy to go and talk to her. I think it made this lady's day. Dad had been saying last night that he wanted to go home. and did not understand why he was there. He also did the night time thing again of switching off all the lights. This time they were expecting him so there were no major problems.

Am I strange? I have now been in the CH 4 times and I am beginning to feel at home. They are many residents who want to talk to me, stroke my face, touch my hair and I don't have a problem with any of it. If anything, each time I visit I feel even more comfortable. I will talk, hold hands and do anything which I feel is needed. As I see it, all these people are some ones mother/father/partner and they are no different to my own lovely dad. I am just feeling that I am getting more and more drawn into the CH. I do hope that if dad sees me being nice to everyone else, then he may be more willing to do the same. One of the staff said to me today that it was lovely that I visited so regularly, as some people do not get any visitors at all. I think dad has made a new friend because he started to eat some chocolates which belonged to another lady. She said to me that dad was more than welcome to them as she had eaten enough. This is the lady who is at dad's meal table.

Love Burfordthecat x x

 

[Grannie G]

Dear Burford

I think it`s wonderful you feel so comfortable at your dad`s home. It is an indication of the warmth and ethos of the home to make you feel so good after such a short time.
I`m sure your dad is happier too. It sounds as if he feels secure at last.
I hope this sees the end of such hard times for both of you.
Love xx

 

[Chrissyan]

That's wonderful Burford, any chance of him staying there? You can work something to suit his partner I am sure.

 

[burfordthecat]

Thanks Sylvia and Chrissyan

That's wonderful Burford, any chance of him staying there? You can work something to suit his partner I am sure.

Well

I am having a meeting with my SW and dad on Thursday afternoon to discuss how the assessment is going. I know that they could take dad but it is in the shared room on the third floor. I am going to ask if dad does stay and goes into the shared room, could he then be first on the list when a single room becomes free. However, I get the impression from dad that he thinks he is still in "some sort of hospital" and is just waiting for the doctors to give him the OK to go home. He is now saying that he feels much better (and he certainly looks it) so it should not be too long before he can get out of this "sleeping house" as he calls it. Thursday is going to be really hard.

I did say to dad yesterday that he will not be going back to his own house but will be moving into a bungalow close to us. He agreed and said that it was a good idea. Not really too sure how long I will be able to use the line of "you only in here till the bungalow is available" Lies, lies and even more lies. This disease is just so cruel.

Love Burfordthecat x x

 

[BeckyJan]

Hello:
I have just updated myself on your thread. Its lovely that you also feel at home in the CH. That is just how it is where my husband is. There are some wonderful care homes around - I think Connie is to share her experience on this too.

With my husband I use the line of 'convalescent home' until he is stronger Would yur Dad accept this?

Good luck for Thursday.
Love Jan

 

[Grannie G]

Dear Burford.

You could tell your dad he will be moving into a convalescent home or retirement flat.

 

[julieann15]

Hi Burf
Hope that today with your dad has not beem too stressful? Hope that your dad is settling and saving the CH some money with turning off the lights? At least they now know it is not a power cut? Take care?

Love Julie xx

 

[gigi]

Hello Burf...

I know that they could take dad but it is in the shared room on the third floor. I am going to ask if dad does stay and goes into the shared room, could he then be first on the list when a single room becomes free.

It does sound as though you're thinking it yourself...if dad is "reasonably settled" where he is...and they can offer him someting permanent ..and you're happy with everything...can he not stay there?

I accept there are reasons for wanting to move him nearer to you...but you will probably have to go through a whole new set of worries to settle him again..and it may just add to his confusion.

Hope I'm not adding to your confusion by bringing this up...

Love gigi xx

 

[burfordthecat]

Hi Julie

Well, today I did not visit dad. It was the first time his "lady friend" has visited since dad had been moved. She has not rang me so I can only think that everything is OK. I will be seeing dad tomorrow. I know this sound somewhat selfish, but I am beginning to really enjoy my lovely dad being only 10 mins drive from me. I am popping in so often to see him, he may ask the staff to stop letting me in.

As to the saving the electricity bill, well, I will find out more tomorrow. I guess what has been happening is that dad is seeing a light on and switching it off, however there is always another light just a bit further along which also needs switching off. This continues until all the CH is in total darkness. Makes me smilie every time.

Love Burfordthecat x x

 

[burfordthecat]

It does sound as though you're thinking it yourself...if dad is "reasonably settled" where he is...and they can offer him someting permanent ..and you're happy with everything...can he not stay there?

I accept there are reasons for wanting to move him nearer to you...but you will probably have to go through a whole new set of worries to settle him again..and it may just add to his confusion.

Hope I'm not adding to your confusion by bringing this up...

Love gigi xx

Hi Gigi

Lovely to hear from you. I think that we may have "our" wires crossed. Dad is now in a CH for assessment very close to me. Traffic lights permitting, I could be with him in less than 10 mins....and I love it. It is so nice to think that I can pop into town and do bits and bobs and then still have time to viist dad , drink coffee and get back in time to pick up my daughter from pre-school.

At the moment, I am hoping that dad will stay close to me. Even if it means that he has a "shared room" on the third floor. Well, so far in dad's home there are 31, 3 of which are men. So if dad were to take the shared room, how long would it be before another man wanted full time care? I know all of these things are not perfect, but when dealing with dementia, nothing is perfect.

Love Burfordthecat x x

 

[DeborahBlythe]

Burf, so glad that things are going smoothly, even enjoyably for the time being. Fingers crossed that you get what you want. And yes, the shared room as a temporary measure does sound like the right thing. Are you saying that it is a shared room but at the moment there is no-one else in it? That might make it more expensive, I'm guessing, and also the third floor isn't ideal, but your idea of asking for first preference on the next available room is a very good one.
Love Deborah xx

 

[burfordthecat]

All plans on hold

Popped in to see dad this morning. He seemed OK but very keen to "go home". I had chat with the manager. Apparently dad is now regularly asking to "go home". He keeps saying that he does not know why he is there and he should just "go home'.

I asked the assistant manager whether she feels that dad could stay there permanently following the two weeks of assessment. She said, that she did not feel it was the right thing for dad. Her suggestion was to send him home with a big care package in place.:mad. Whilst I know that it is not just her say so, she could still refuse to allow dad to stay permanently. Do you think her opinion would be different if she could see the reality of the "home" for dad. How could she guarantee that dad was not going to wander in the night time. So far, every night dad has been up in the "wee" hours switching all the lights off. I asked the staff this morning if dad is awake when he is doing this. They say yes and when they speak to him about it, he reply is "this is my house and I am paying the bill.)

Met my first awkward person today. Dad had decided to sit in one of the other lounges, next to quite a frail looking lady, who just stared at dad the whole time. When I was leaving I said to dad that I would see him tomorrow. At which point frail old lady got upset and said that she couldn't have me messing up her room and wanted to know exactly why I was coming back. She also asked how much would she need to pay me. I just explained that I was "free" and was just coming in to see dad. This seemed to calm her a bit. Thank goodness that I have knowledge of dementia and how people can be affected so differently. The same frail lady turned to dad and said, "your head is all wrong, going in the opposite direction to your body" Pot, kettle and black spring to mind.

Love Burfordthecat x x

 

[julieann15]

Hi Burf

Not to put too fine a point on it but is the assistant manager only saying that your dad should be going home as he is causing her a few problems with his night wandering and switching lights off? Does he/she have no idea of the stress you have been under over the last weeks NO MONTHS with your dad's behaviour- his total denial of anything being wrong, his overdosing on medication, his breaking into his pivitol box, his night time wandering in the cold down the lane with his dead brother who has locked him out, his lack of eating and drinking and his total refusal to allow any carer into his home to help him.

Sorry Burf but you and I know that your dad is not going to accept a care package in a million years- he/she has certainly not realised the enormity of this thread and the pressure of trying to keep dad safe long distance has put on both you and your family- my heart goes out to you as I have had it so easy with mum who has now agreed to move into the care home 1.5 miles from me "when the time is right"- Do you really want the worry of all the above again- reading between your lines and your PM's to me- care is the only option for your dad as his track record has proved he is not safe to be living alone in such a remote area- if not this care home then certainly another not too far from you- apologies for my bluntness but this manager I feel may be looking for an easy life esp at night?

Love Julie xx

 

[DeborahBlythe]

I asked the assistant manager whether she feels that dad could stay there permanently following the two weeks of assessment. She said, that she did not feel it was the right thing for dad. Her suggestion was to send him home with a big care package in place.:mad.

Love Burfordthecat x x

Oh Burf, what a nuisance. I'm very sorry. Can you speak to the Manager tomorrow, rather than the Assistant Manager?

It's easy for the AM to say 'send him home with a big care package', but is she in a position to organise this, or indeed to monitor how well it works or not? I think not.

Is this an issue about capacity again? Is she saying that your dad has capacity to decide where he wants to live? I suspect Julie may be on the right track about the night-time wanderings and wanting a quiet life, but how hard is it for the home to keep on top of this trait, once warned?

Unfortunately the care home will have the last word about whether they want to care for your dad, which is why I would speak to the Manager, rather than the AM, and try to point out how unfeasible it is for your dad to stay at home.

Much sympathy and best wishes for tomorrow
Deborah

 

[Skye]

Burf, that's so disappointing. I'm afraid Julie may be right, and the AM thinks your dad would be too much trouble.

You know a care package would not be the answer for your dad. I think you need to get straight back onto the SW. Sorry, I know that's going to be more stress for you.

I also think you need to do some more searching. It could be that if your dad is night-wandering, he'd need a dedicated EMI unit.

Sorry. You've been through so much, and it's not over yet.

Love,

 

[Tarika]

I can't cope

Dear Burf
Please, please say these three words to the SW. This will be translated as 'Carer Breakdown'. You are the main carer for your dad. Without you monitoring what's going on nothing would get done and result in another crisis.
Refuse to engage with a 'going home' package. State you can no longer cope with coping and leave it to the professionals to sort it out.
love Tarika

 

[Grannie G]

Dear Burford

It all seemed to be going so well, Im really sorry.

If there is a review meeting/case meeting, whatever they call it, perhaps if you emphasize that any planned care package is at risk as you are sure your father will refuse to accept it.

And if he refuses to accept a care package it puts him at risk and you will be back to square one.

I wonder if they would have their own fathers in the same position.

 

[jenniferpa]

It does sound like they can't cope. To be honest though, havving someone who is wandering around in the middle of the night on the 3rd (or other) floor seems like an accident waiting to happen.

In my experience care staff may have no idea what it is like "outside the walls" as it were, and may have little idea about what (or rather what is not) available.

It does seem clear, though, that for whatever reason, this is not a suitable long-term placement for your father.

 

[Canadian Joanne]

She said, that she did not feel it was the right thing for dad. Her suggestion was to send him home with a big care package in place.:mad. Whilst I know that it is not just her say so, she could still refuse to allow dad to stay permanently. Do you think her opinion would be different if she could see the reality of the "home" for dad. How could she guarantee that dad was not going to wander in the night time. So far, every night dad has been up in the "wee" hours switching all the lights off. I asked the staff this morning if dad is awake when he is doing this. They say yes and when they speak to him about it, he reply is "this is my house and I am paying the bill.)

Just wondering how the AM can justify sending your dad home with a big care package when she has had first-hand experience of his wandering during the middle of the night. Does this not show how your dad is incapable of living on his own? Care packages don't normally involve night services and that's one of your bigger concerns, isn't it? Also, how can she refuse to allow him to stay? Maybe she has input but does she have final say?

An aside - I love the "This is my house and I am paying the bill".

Perhaps this is not the place for your dad, but it does sound right, if only they could work around his midnight flits. Do they have anyone trained in dementia care? is there another home close by?

Thinking of you.

 

[sue38]

Hi Burf

I agree with other posts. You should definitely speak with the manager. When my dad first went into his home, some of the senior staff felt they couldn't cope with him, whereas the manager saw him as a challenge that she could conquer. Possibly she was looking at it from a financial point of view, although now there is a waiting list for the home.

It took a little time for them to get used to him and vice versa. 2 weeks is such a short time for your dad to settle.

The most important thing is - do you feel this is the right place for your dad? If so persevere. If not look around at other homes.

Clearly you feel that your dad is unsafe at home, and you should labour this point.

Good luck.