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sept 21

PalSal

Registered User
Dec 4, 2011
920
Pratteln Switzerland
Hello TP friends,
We have a place on the Alzheimers unit in the local village home on the park.
There are 14 patients and Nicky will join them on Sept 21. one week.

I am not sure what to do. So many of the things I have read, do not really apply, to Nick. Like the preparation check list from Contented Dementia. This list is really about people who can answer questions and participate it seems, he is a bit further along I guess. Although his physical health and condition are excellent, his cognitive abilities are truly gone. Nick does not have many words and can no longer communicate well., with the added issue of German language, will need to be non verbal communication.

I will rely on their professional advice. I have another meeting with them tomorrow. I am not sure if I will be able to visit immediately or take him for walks immediately . Perhaps they will suggest a waiting period. I really do not know.

I am planning what I will take to his room-
his clothes and baseball hats
His favorite chair from our livingroom.
his painting of his school Marlborough. Maybe some mementos of his life of travel (although he never looks at this stuff here)
Photos of his life, our family, and his family of origin

He no longer reads....but he used to carry the Economist (we called it his prop....long after he quit reading it . Maybe a few copies. No need for a tv or radio he never uses either.
His mother sent his childhood teddybear a few years back when she moved house herself , perhaps I should take it.

I am very open to your suggestions of what I should take. Also, to hear from each of you how long it was before you actually went to see them in the home?

Pal Sal
 

canary

Registered User
Feb 25, 2014
13,894
South coast
We have a place on the Alzheimers unit in the local village home on the park.
There are 14 patients and Nicky will join them on Sept 21. one week.
👍:)

The list of things you are planning to take sounds excellent. I think I would definitely pack his childhood teddybear.
When you pack photos, make sure they are in a frame that doesnt contain glass and dont send anything valuable or irreplaceable - maybe scan the photos and send copies. Momentos are actually more helpful for the carers as they give the residents backstory and can be used as starters for (non-verbal) communication.
Make sure you label everything (even the chair!) as things in a dementia care home tend to go missing as the residents tend to have a rather fluid notion of ownership.

When mum moved into her care home I didnt visit for a couple of weeks. In UK at the moment new residents are having 14 days quarantine. Is there something similar there?
 

jaymor

Volunteer Moderator
Jul 14, 2006
13,312
England
My husband was past tv and ratio when he went into his nursing home but I did take him in a CD player and his favourite cds. If he sat in his room the Carers would put his music on in the background. Although he never seemed to be listening to it they did see a lowering of his agitation and every now and again he would be tapping his foot. I also supplied a box of bits and pieces, all of them would have at some time been of interest to him . The Carers used it to try to divert him when things were not good and it encouraged the Carers to interact with him too. It must be very difficult for them to begin with to know how they can help a new resident.

I also did a folder giving details of my husband’s life before dementia, holidays we had had, the names of our children and grandchildren. I thought it would be good for them to know something of his life before Care. I then made a memory book using pictures of people, things, anything that was part of our lives. Lots of notes through the memory book and he did look through it quite a lot.

The Carers were all interested in what the men had done in their lives and lots of conversations went on.

I hope it all goes well @PalSal
 

Grannie G

Volunteer Moderator
Apr 3, 2006
72,094
Kent
Will this help @PalSal

 

Canadian Joanne

Volunteer Moderator
Apr 8, 2005
16,748
66
Toronto, Canada
Hi @PalSal you seem to have covered everything. I would give copies only of the photos, just in case. I wouldn't have anything of either monetary or sentimental value going to him either.

I went in every day at the beginning but my mother was happy to see me and it was all good. It was a couple of years later when she became quite horrible and the visits became an endurance. That's when I stopped visiting for a week or two at a time. So it is quite individual. You must also consider yourself - do you need the break? If you do, take it and try not to feel guilty about it.
 

PalSal

Registered User
Dec 4, 2011
920
Pratteln Switzerland
👍:)

The list of things you are planning to take sounds excellent. I think I would definitely pack his childhood teddybear.
When you pack photos, make sure they are in a frame that doesnt contain glass and dont send anything valuable or irreplaceable - maybe scan the photos and send copies. Momentos are actually more helpful for the carers as they give the residents backstory and can be used as starters for (non-verbal) communication.
Make sure you label everything (even the chair!) as things in a dementia care home tend to go missing as the residents tend to have a rather fluid notion of ownership.

When mum moved into her care home I didnt visit for a couple of weeks. In UK at the moment new residents are having 14 days quarantine. Is there something similar there?
No I do not believe he will quarantine. But my meeting is tomorrow. We had the COVID test yesterday and were negative. We have limited contact with outsiders anyway. (but he could have the test yesterday and get it tomorrow) So I am not sure what they are doing.
 

PalSal

Registered User
Dec 4, 2011
920
Pratteln Switzerland
He has been up since about 3 am again. Sunday night was terrible too, 2 am to 6 am.
During the day I get into fear completely ....financial fears and I think I cannot afford to put him in a home. Then in the middle of the night when I cannot get him to settle and he is up 2 am to 6 am, I think I cannot go on like this.
I am writing here and I have put him to bed on the couch as he will not stay in bed and I just end up going up and down the stairs.
I am so at the end, just hope I can make it this last week until his room is ready. He is so helpless and pathetic, but I do not feel the appropriate sympathy now. It is all gone.....I just want someone else to do this for him.
In the evening, I am thinking how horrible I am and that I am going to regret that I was not more patient and a better carer, and stayed this course for both of us. But then in the middle of another sleepless night.....I am glad the end is near. But I am so afraid of my own future well being.
 

kindred

Registered User
Apr 8, 2018
2,524
He has been up since about 3 am again. Sunday night was terrible too, 2 am to 6 am.
During the day I get into fear completely ....financial fears and I think I cannot afford to put him in a home. Then in the middle of the night when I cannot get him to settle and he is up 2 am to 6 am, I think I cannot go on like this.
I am writing here and I have put him to bed on the couch as he will not stay in bed and I just end up going up and down the stairs.
I am so at the end, just hope I can make it this last week until his room is ready. He is so helpless and pathetic, but I do not feel the appropriate sympathy now. It is all gone.....I just want someone else to do this for him.
In the evening, I am thinking how horrible I am and that I am going to regret that I was not more patient and a better carer, and stayed this course for both of us. But then in the middle of another sleepless night.....I am glad the end is near. But I am so afraid of my own future well being.
My dear you have done enough. For so many of us it is impossible and unwise to stay the course, we would be too ill and broken to go on. It is for the best and a team of carers is needed now. we are with you. With love Kindred
 

canary

Registered User
Feb 25, 2014
13,894
South coast
He is so helpless and pathetic, but I do not feel the appropriate sympathy now. It is all gone.....I just want someone else to do this for him.
In the evening, I am thinking how horrible I am and that I am going to regret that I was not more patient and a better carer, and stayed this course for both of us.
(((((((((((((((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))))))))))
You have reached the end of your abilities.
Dementia takes and takes and however much you give it it always wants more. There is a limit to what we can do, our bodies can only take so much. We are not super heroes with unlimited ability and you have reached your limits.

Once he settles in the care home you will find that the old feeling will come back. At the moment it is swamped by exhaustion.
 

Izzy

Volunteer Moderator
Aug 31, 2003
63,227
69
Dundee
It must be such a difficult time for you. I hope everything goes well for you both.
 

nita

Registered User
Dec 30, 2011
1,972
Essex
Have you considered night time carers, @PalSal ? I had them for my Mum - fortunately she was funded by the council and they paid for 3 nights a week. When I broke my shoulder we paid the other four nights a week for a month. She seemed to settle down later with the help of the appropriate pain relief. At that time (2012/13) it cost about £7 per hour for 10 hours - they did a waking shift of 10 pm - 8 am. Admittedly, as I was in the room above where she slept it did keep me awake quite a bit. I didn't have the problem of her wandering about as she was confined to bed but she was very upset at night though she did sleep part of it.
 

PalSal

Registered User
Dec 4, 2011
920
Pratteln Switzerland
@ nita
I live in Switzerland, I could pay for night caring....out of pocket and it would be expensive, too.
I thought about many solutions. the best would have been to bring in an EU worker, but with Covid that is no longer a possibility. I have really just given up. Which maybe exactly what is supposed to happen now. I do no know.
I am ready to have a life of my own...with my hubby well cared for and me a loving friend in his life. I have not been a "wife " for many many years. And sadly he has not been a husband. He no longer knows me much of the time, and nor does he know where he is much of the time. So I really feel it no longer matters as much as it did before. Except the financial part....and that is what it is.
I got leukemia 5 years ago, I kept caring for him. I have decided I am well again in full remission since 2018. Perhaps I can have some peace and serenity for a while in my life. And he can have the comfort of professional carers and not an irritated, tired and resentful carer. I did my best perhaps it was not enough but its all I could do.
 

Bod

Registered User
Aug 30, 2013
1,349
Be aware of the State/Canton benefits you might be entitled to. Both for Nicky and yourself.

Bod.
 

Grahamstown

Registered User
Jan 12, 2018
1,727
80
East of England
He is so helpless and pathetic, but I do not feel the appropriate sympathy now. It is all gone.....I
Yes yes I was just the same. It’s something you have to live with, the strong beautiful man reduced by the disease in his brain, the failure to be able to have the necessary sympathy although I did feel compassion. My sympathy is for you and your journey over the past years, doing your best which was superb, and you finally need the relief from caring before you are broken. It’s not a universal panacea but the pressure is off. Take extra care of yourself at first, please, Sue xx
 

nita

Registered User
Dec 30, 2011
1,972
Essex
I think full time care is probably the best solution despite the cost. Think of it as respite care for the time being, perhaps try not to envisage the future.
 

PalSal

Registered User
Dec 4, 2011
920
Pratteln Switzerland
It is 5:00 am here. I did get a pretty good sleep but am up earlier than I would like to be. I do hope sleep will return to me. Thanks @Bod, my friend in the local Geimeide is helping me to fill out the SVA forms on Tuesday which will determine, how much if any will be contributed by the gov't. I am sure it will be something, as once I found my way in the bureaucracy there were monies in the past when I was caring for him at home. I sure it there will be some contribution. Today I see my accountant who is also well informed on processes. I am fearful , but that has always been the way with me , and as I can no longer go out and earn my living....I must rely on our savings and small pensions. Perhaps I will find some work too. Who knows.
It is wonderful to read the support messages from all of you. I found TP in 2011 and when I was going it alone the first years of the journey as the support groups were only in French and German locally, and neither of languages could I express my feelings well enough to get comfort and support I needed. I was really in a bad way then, and having an English speaking support group was critical to survival. The practical advice and understanding support I have received here has been invaluable.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
72,094
Kent
Hello @PalSal

I`ve just seen World Alzheimer`s Day on September 21st coincides with your husband`s first day of residential care. I hope this is a good omen and all will be well.

I did my best perhaps it was not enough
I believe our best is always good enough. If it was your best you could have done no more.