Why are we struggling with visiting now?

[SoAlone]

Hi all,
Yet again I turn to the wisdom of you all.

Brief background for those who don't know. OH has Alzheimer's and Vascular Dementia and has been in a Dementia Assessment Unit for 3 months. Best Interest Meeting done and CHC funding agreed. He has been accepted by a very highly recommend Specialist Dementia Nursing Home, just waiting for place to become available. OH has little understanding of either the fact that he is ill, where he is and the level of care he needs.Agitation and aggression are constant visitors to his personality although not all the time. In the same way he is not always completely confused but his inability to retain information makes conversation difficult on most levels. Because of this he appeared not to understand the outcome of the best interest meeting.

Anyway strangely having been through a pretty traumatic period over the last 12 months, both my daughter and myself are now finding visiting difficult and really we don't know why. We have been dealing with the requests to take him home on and off throughout his whole stay, some angry some pleading and some just generally vague and soon forgotten. Also his journey back in time to when his daughter was small and her mum, his previous wife was around. Sadly she passed on a couple of years ago and my daughter is still coping with that.

It just seems strange to us that these feelings of not really wanting to visit and spend time with him should surface now, after much of the difficult stuff has been done. Although we are aware there will be more when he is moved.

Grateful for any thoughts anyone may have

 

[marionq]

You are emotionally winding down now he is in safe hands with his future mapped out - such as it is. I know that I spend a fair amount of time considering options and would find it a great relief to know exactly where we go from here.

 

[SoAlone]

You are emotionally winding down now he is in safe hands with his future mapped out - such as it is. I know that I spend a fair amount of time considering options and would find it a great relief to know exactly where we go from here.

Thank you marionq. I know what you mean it is such a responsibility just being part of deciding someone so close to you's future. I away in was taken out of our hands by first sectioning then Best Interest decision by Assessment Unit, but we still had to consider our own views and OH' s views and needs, not necessarily the same thing. We spent a lot of time researching and visiting various homes, but in the end our choice was very limited due to the nature of his dementia and the challenging behaviours it brings. because of this CHC funding was agreed which was applied for by the Assessment Unit. I am not sure whether to be grateful for these things or sad that his condition is such that he needs/qualifies. Take care wish you well on your journey. I am still finding that everything I think is an answer just brings more questions. I think that is called Life

 

[canary]

You are worn out and the recent CHC reward and recommended placement will probably have brought home to you the extent of his problems. I guess you have been hanging on, trying to be strong, for so long and now you just cant do it

Perhaps you need some respite - dont visit for a couple of weeks (and perhaps combine it with a last minute holiday) and then see how it goes.

 

[Loopiloo]

Hello @SoAlone. a lot of what you have written sounds familiar to me and I agree with @marionq and @canary that you are emotionally winding down and worn out. It is an extremely difficult time which deeply affects you emotionally and mentally - and physically.

It just seems strange to us that these feelings of not really wanting to visit and spend time with him should surface now, after much of the difficult stuff has been done. Although we are aware there will be more when he is moved.

It will all take time, it took me months to 'warm' to the care home, the benefits, and just everything concerning my husband moving into a care/nursing home. It took him months to 'settle'. There were times when I struggled to walk through the door into the care/nursing home.

The decision that my husband needed a care home, not to return home after months in hospitals, was taken out of my hands also and perhaps that played a part in the confusion of thoughts and emotions I experienced. Your husband sounds similar to mine was concerning agitation, aggression, confusion but not all the time. My husband also suffered terrible anguish that he was not coming home.

It was dreadful to witness, and painful to feel his pain. Several times I was close to bringing him home. He had no understanding of why he was there, why I was not taking him home. He thought I was responsible for him being there.

I tried to 'distract' and when that was not possible would say that the consultant had arranged for him to move to a care/nursing home as he still needed nursing care, but the third hospital he had been in (Community hospital) needed the beds for more ill patients... and so on, along those lines. I did manage to convince him that it was not what I wanted either, being very careful to choose my words, and not going into discussion. Distractions.... Eventually he accepted that it was "not my fault" and he regained his trust in me. Visits improved, but with setbacks from time to time.

It is a new chapter in 'life with dementia' for all concerned and it can take time for it all to improve. I can't offer advice, only sympathy, empathy and understanding of what is a profoundly difficult change in your lives.

Finding Talking Point just six months before my husband left home for the last time (unknown then) and would be in hospitals six months then residential care was a tremendous help and support to me. I hope it will be to you also. There is so much experience, knowledge, genuine interest, caring and support on TP, keep on writing.

Hopefully for you as for others here this difficult time will eventually pass and there will be more settled times ahead. Not to say there wont be difficulties, good days and bad days, responsibilities, etc., but your visits will improve.

I feel what I am writing is somewhat 'lame' rather than reassuring, but nothing is easy with dementia in our lives, it is hard. Give yourself time to adjust to the changes ahead, time to adapt.

Very best wishes
Loo x
.

 

[lemonjuice]

I agree, it may well be feelings which you haven't allowed to surface before, because you were pre-occupied with other issues, may finally ne 'poking their heads above the parapet.

My mother was just shy of 6 years in her NH and actually the longer she stayed almost the worse the guilt became and there were whole period sof time when I found it so difficult to 'steel myself' for the visits and dissolved when I came out.
I have a friend who is going through similar now and I've been advising her to keep her visits short and now even the NH is saying 20 mins maximum as her mother becomes very agitated and it's unhelpful all round to have 'a decent length of visit'.

 

[SoAlone]

Thank you everyone, I think you are right, they are pushed to the bottom, but as other things on the pile clear they surface again.
Update - Assessment Unit now considering another placement, which is nearer and may have vacancy quicker as they feel his behaviour has improved since another resident he had difficulty with has left. I am a little wary, I don't want him to go somewhere unsuitable because it is available but equally don't want him put under restrictions that may not be necessary. Ward Manager who I get on really well with promises she has given the new place a 'warts and all' run down, so they should make an informed decision. And so the roller coaster goes on