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sept 21

LynneMcV

Volunteer Moderator
May 9, 2012
4,068
0
south-east London
I am sorry to hear that you have been so poorly @PalSal and I hope you are feeling more like your normal self soon. The cake and lemon souffle that you are making for Nick's birthday celebrations sound wonderful and I hope everyone has the best day possible. When my husband was still alive I remember how friends fell away as his dementia progressed - but there was one who stayed firm throughout it all - such friends are so precious.
 

Duggies-girl

Registered User
Sep 6, 2017
2,515
0
I am sorry that you were ill @PalSal but I am glad that Nicks old friend has stayed in touch. Dad had a friend who always visited him every couple of weeks, they grew up in the same road and went school together so were lifelong friends. His friend is almost 91 now and I am ever thankful for him and hope to see him see him soon. A lovely man.
 

PalSal

Registered User
Dec 4, 2011
960
0
Pratteln Switzerland
NIck had a nice birthday. The staff decorated his room with balloons and at tea time we had cake and lemon souffle with Nick's visiting old friend. It was a pretty good visit. He was beautifully groomed for his birthday as I had told him he would have a special visitor. They did a good job. He was a bit restless as it begins that time of day for him. 15:00 ish is the start of the sundowning anxiety.
I am grateful he is there, it has been very hard for him. But they do as good a job as they can, and I must bring the love each day. He is very sensitive now and anything too loud or multiple stimuli are just too much for him.
He is settled now. It took 6 months.
 

Sarasa

Volunteer Host
Apr 13, 2018
2,921
0
Glad Nick had a good birthday and that he has settled in the home. I hope you are starting to settle into your 'new' life too.
 

PalSal

Registered User
Dec 4, 2011
960
0
Pratteln Switzerland
My new life.....well it is a strange life. Really living alone for the first time in my life. It is an adjustment. It would not be so strange if it were not for COVID but with the restrictions on daily living , I like so many of us, feel pretty isolated. I am glad I saw so much of the world as a young person. Because now I feel that it will probably not be a world of travel like it was.
 

PalSal

Registered User
Dec 4, 2011
960
0
Pratteln Switzerland
Nick's primary doctor, Neuropsychiatrist , who cared for him and our family died on March 25 th. He was 60 and I had no idea that he was ill, if he got Covid, perhaps a heart attack. No information. He came to see Nick in the home for a check upon how things were going in Feb. I was not aware of anything. He was our doctor for about 12 years of the journey. I never had to call him for an emergency or anything until Nick went into care......then there were a number of occasions in the last six months where I had to contact him after hours or on the weekend. As he had known me so many years , he responded immediately to my urgent requests, as I had never bothered him in the past.

I decided not to seek a new doctor but to use the psychiatrist who is used by the nursing home. As Nick no longer speaks, it is about meds. Wel,l anyway, the"some" staff reported that Nick has been having hallucinations and was aggressive when they dressed him and at other various times. So, we were (my daughter, who is an MD. and I ) were asked by the new psychiatrist to use a medication Seroquel. This had been tried during the disastrous transition to institutionalized living in the autumn. But the home were using so many drugs at that time, it could not determined which was giving him the side effects. It really took 6 months to stabilize him after the withdrawal of all that experimentation, and the return to Dipperon.

So, they asked if they could try using Seroquel again. We agreed to trust their opinion and go with a 12.5 dosage in the morning. After six days (on Thursday) I noticed the return of side effects. I asked the staff to note the side effect in the notes on Thursday evening when I came to feed him. (It ended up being any augment with one of the staff, who I do not like-in German which is always more difficult for me) I came in early on Friday morning, and met with the head of nursing for the dementia floor who agreed with me that she could see the side effects returning and she needed to get the doctor's order to halt the medication. Already since Thursday evening it had moved from an involuntary seizing of the neck muscles to seized arm and claw hand. I was left with the impression she would do this before the weekend. I called Friday afternoon to check. Unfortunately, it had not been cancelled and thus followed hours of frustrating attempts to reach the new psychiatrist , our GP- requesting the nursing staff contact someone in their administration for help (the nurses on at that time said there was no one to contact as it was the weekend!!!!!!!!!) In the end, I reached my daughter who was able to get the on call emergency psychiatrist to give a halt order for the weekend.

I will now have to deal with the" fallout of making a fuss", and over-riding instructions. The home was already questioning if they want to keep Nick in the facility. (When I spoke to the head of the floor she said they had written the psychiatrist about possibility of sectioning him to the mental institution. I asked what this would do as , he cannot speak and how would that help this situation as he cannot change to another facility and expect it to help him in any way. He is not coping with change and I thought he was doing much better in the home and getting more settled)

This was all a big surprise to me. As when I am with him although much diminished and not perfect he has been responsive and eating welll (a few months ago he was not eating at all) I was really taken aback by this information that they were considering sectioning him.

In the meeting, I expressed my astonishment that a nurse (not the head nurse ) would suggest this to the psychiatrist without discussing it with my daughter or I first, he idea of sectioning him to a hospital. I said the home advertises as having specialized Alzheimer's /Dementia care, and aggression can be part of the disease. (I am self paying) The head nurse, who often cares for Nicky personally admitted that she is able to handle him and needed to discuss it with her team & the psychiatrist again about how best to handle the situation. I told her I would need time if I must find another solution-either bringing him back home or moving him to another facility. But that I did not agree to section him!!!!

I will go in this morning and observe and help if I can, I have told them that if he is aggressive I do not care if he is cleaned and shaved etc. It is better to wait until he is calm rather than a fight with him. Isn't that just standard care of Alzheimers "Contented Dementia"??? I do not think these people care about that they only seem to want the docile patients not the one who is sometimes challenging.

They know that I am well connected in the Alzheimer's community, the medical community and the local government. So, I don't think they will let it go that far.

So that is it. Nothing is ever over in the long slow drip Chinese torture. For poor Nicky or for me.
 
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Grannie G

Volunteer Moderator
Apr 3, 2006
73,184
0
Kent
This is all so upsetting @PalSal

My GP retired and it has been difficult to connect with the new one. Fortunately, I no longer need him for my husband and I rarely need him for myself so it isn`t a problem.

The attitude of the care home is frustrating and annoying, especially for one which is dementia registered.

When I think how my husband`s home managed what I witnessed as the most challenging behaviour I am filled with admiration and gratitude. This home was not in any way top of the range, nor was it registered for dementia. It also had disappointing inspections by the CQC which didn`t agree with my personal experiences.

It will be tough on you if your relationship with the home suffers. I hope you can all come to a more amicable agreement.
 

PalSal

Registered User
Dec 4, 2011
960
0
Pratteln Switzerland
Thanks Sylvia, I will take my good friend with me to the meeting to help me to feel I am supported and also to help me to keep my emotions in check. She knows us both for over 25 years and has been part of his care from time to time. Sadly, my daughter who is a doctor is usually just too busy to come to meetings regarding my husband. She would be the best to join a meeting, but with three small children and her job, she seems to only be involved in emergencies.
I do think the nursing home believes they are good and using good techniques. But I fear their training is not up to USA or UK standards regarding dementia care. And the issue is out of the 14 patients on the dementia floor., only Nick and one other woman display challenging behaviors. Everyone is is docile or highly and effectively sedated. (It is a very sleepy environment)
I will do my best not to destroy the relationship with the staff, as some of them are doing a good job, some are just doing their jobs, and some need a good long break from their jobs.
 

PalSal

Registered User
Dec 4, 2011
960
0
Pratteln Switzerland
Update
Last week was difficult with Nick's strong reaction to Seroquil. On Thursday, I saw that he was having a muscular and physical reaction to the drug, getting the staff to withdraw it was my challenge. Late Friday night it was halted. (That was the challenge and battle which I wont go into now....but it was not easy!) By Tuesday his physical symptoms subsided. He cannot tolerate the usual meds used to deal with his more challenging behaviors (ie: Seroquil, Risperodone, Temesta all tried, all gave him dramatic side effects) They are using Dipperon and Trittico (which is an anti depressant) and at night some kind of benzo sleeping pill.

So, it is down to the nursing staff to nurse. The new neuropsychiatrist, who has stepped up for our missing beloved Prof (who died unexpectedly on March 25th-he was our doctor specialist for 12 years), agreed with me that I was right to step in and stop the meds. The new doctor also supported me in instructing the nursing staff to find new ways to cope with his ever changing behaviors, as meds clearly do not work for Nick (For example, they assigned him a male nurse who is on the receiving end of most of his aggressive behavior..Nick does not like being changed and handled by a male nurse) I suggested they assign female nurses for his daily care. The doctor agreed.

And no having him in the "public patient" areas unattended. If they are worried about him being aggressive it is their job to move him to another area of the ward. The doctor agreed and instructed the head nurse.

It is possible that this belligerent phase will pass, and he goes back to kind and gentle self. I hope so. But it until it does, I must help the nurses by being present and supporting them in the times of day when Nick is particularly aggressive. I have been going in everyday for his one of his meal breakfast , lunch or dinner. Feeding him one meal each day and staying two to three hours where they do not have to intervene and watch him. I accept this is the way it is for the moment. And I do not have many commitments these days anyways so this is the right thing to do.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
73,184
0
Kent
I accept this is the way it is for the moment. And I do not have many commitments these days anyways so this is the right thing to do.

This is why we are still carers even though those we care for are in residential care.

It`s good you are still the one who knows your husband so well you are able to give him the security he needs @PalSal
 

PalSal

Registered User
Dec 4, 2011
960
0
Pratteln Switzerland
Thanks Sylvia.
  • Resentments-
  • Mother's Day. My son in law and his family have a disproportionate amount of time for celebrations, vacations and holiday time spent with his family which requires my daughters presence and means I am alone. I have to work on this constantly and accept that this is his life and family too and he wants to be with his family at weekends. I try to see my daughter and the grandchildren during the week and when my daughter is not working, or by helping with the children babysitting. He naturally wants daughter and my grandchildren to participate and interact with his family. So there it is. I must pray to not to be resentful and to be of service to their family. Also, daughter is going to have her step mother and half sister. (as her father my fisrt husband died in Sept 2020) this summer which means I will also be excluded from activities. I like the stepmother, but I am sad that she gets a holiday with them in Italy, not me.
  • To wait for someone else, or to expect someone else to make my life richer, or fuller, or more satisfying, puts me in a constant state of suspension; and I miss all those moments that pass. They never come back to be experienced again.
    —Kathleen Tierney Crilly
  • The solution is I must plan my own life to suit myself and just go away and quit waiting to be included. Find joy. Take responsibility for my own entertainment and leisure time.
  • Disappointed with our youngest son for his attitude about visiting Nick. “What is the point? is what he said to me yesterday when I asked him to join me in visiting his father, after giving him his Sunday driving lesson. The point is that I need to see that others love Nick, that Nick is just not a piece of nothing stored in a cold refrigerator, waiting for death. Poor Nick. It makes me so sad. But it goes back to my own guilt that I put him in this home where he lives in isolation.
  • Rationally, I recognize it is the disease which has created this situation and not me. Not the all-powerful Sally, I did not direct the course of Nick’s life, but the HP: I must be kind and patience and maintain constancy on my part. So that I can live with myself, I must not be so judgemental about the children. I must do what I believe is the right thing by going to him daily and being sure that his needs are met and that he is comfortable and for a few hours each day in the presence of love. I am not doing these visits because I am a martyr, I am doing it out of the love that was for this lovely man who is no longer himself.
  • With Nick's children. Even though I recognise that they have busy lives in another country. I get resentful of their alienation from their father. I get especially perturbed with our daughter, who rarely is interactive and self centred to the extreme. Our eldest son calls from time to time. But our daughter (my step daughter) used her dad’s illness during her medical training as a reason to be placed in Oslo (in Norway each doctor must serve in a outpost community as part of their training) and never not once during that time did she visit her father.
  • They will each have do deal with this in their own way, as he is lost to them now, and would no longer recognize or respond to them.
  • I recognize there is really not much they can do now. And I was like them in many ways as a young person, I got on with my life and only now looking back do I see my selfishness. I must to judge them for their choices and most importantly I must forgive my young self who was not present in the lives of my aging beloved grandparents who loved, cared and supported me. These feelings are old and part of my stuff ….my guilt.
My rational and reasonable self understands that all the children must lives their lives-they are very busy and going forward. My life becomes one of looking back more and more…I must strive to live in the day and make the most of it.
But I must rid myself of my expectations on each of these children and my son in law. They are living their lives and what has happened here has happened, I cannot expect them to visit Nick. It is also complicated by Covid for the Norwegian children, my rational self understands this.
 

margherita

Registered User
May 30, 2017
3,062
0
Italy, Milan and Acqui Terme
It is the never-ending struggle between brain and heart, isn't it?
I totally agree on acceptance. It is the only way to get back our inner peace. We can hardly change ourselves, but it is impossible to change the others. Besides being a waste of time and energy, it is the cause of increasing frustration.
In my opinion you should try to accept your disappointment in your children's choices. And you might tell them ONCE what you think and feel and would like them to do.
Just by reading your post I have realised how disappointed in and resentful about my son's behaviour I am.
I haven't seen him since the beginning of December, but I have never asked him to visit me or told him about my disappointment.
I'd like to write more, but it's a bit difficult because English isn't my language and , above all, because my husband is up and about pestering me as usual
 

jennifer1967

Registered User
Mar 15, 2020
3,767
0
Southampton
ive learnt the hard way that our children dont always see the situation the same as we do. one daughter was told at the same time as the other 3 and she doesnt want to know or get involved or see her dad. i cant change that so i have to accept it. there is the prayer of serenity, basically, serenity to accept the things are cant change, courage to change things i can and wisdom to know the difference.
there are somethings that you cant change and acceptance does bring calm and peace. it just tortures you if you go over it. it wastes too much energy and too much emotion. so ive had to accept it and move forward
 

PalSal

Registered User
Dec 4, 2011
960
0
Pratteln Switzerland
Yes, I do accept the childrens decisions and just try to get on with things. The way I work through my thoughts is to write them out and share them. Then I can get to the other side. So I did that here at TP first thing this morning then moved on with my day.
I had an amazing day. It is very late here now. I walked for two hours this morning. Then went to Nick to give him lunch. He was really good today, the best he had been in 6 months. Stringing together sentences amazing. I gave him his lunch and as he was so amazing I decided to try and get him out and into my car. But I could not do it alone as he doesn't remember how to get into the car. I went and got a nurse and a helper and we managed.
I took him for a ride in the car. He was wide awake and alert. I stopped at various quiet, wonderful places and opened the windows. I did not dare to take him out of the car. But he was connecting, I saw it. We stopped close to cows and then some horses and went to some of our favorite view points. At one poin,t he asked if we could get food. As it was all spur of the moment....I had not even brought a purse let alone money!! But I promised him ice cream on our return and I achieved that. He was funky when I tried to remove his jacket on our return, so I left it alone.
All in all it made me feel good and if I can take him out for a ride in the car that would be great. It was an amazing time, I do not know if it was me who was just up for it but he was really connected today. I cannot expect it all the time,. But really glad it happened today. I needed to feel better about his life. Bless his heart.
 

jennifer1967

Registered User
Mar 15, 2020
3,767
0
Southampton
Yes, I do accept the childrens decisions and just try to get on with things. The way I work through my thoughts is to write them out and share them. Then I can get to the other side. So I did that here at TP first thing this morning then moved on with my day.
I had an amazing day. It is very late here now. I walked for two hours this morning. Then went to Nick to give him lunch. He was really good today, the best he had been in 6 months. Stringing together sentences amazing. I gave him his lunch and as he was so amazing I decided to try and get him out and into my car. But I could not do it alone as he doesn't remember how to get into the car. I went and got a nurse and a helper and we managed.
I took him for a ride in the car. He was wide awake and alert. I stopped at various quiet, wonderful places and opened the windows. I did not dare to take him out of the car. But he was connecting, I saw it. We stopped close to cows and then some horses and went to some of our favorite view points. At one poin,t he asked if we could get food. As it was all spur of the moment....I had not even brought a purse let alone money!! But I promised him ice cream on our return and I achieved that. He was funky when I tried to remove his jacket on our return, so I left it alone.
All in all it made me feel good and if I can take him out for a ride in the car that would be great. It was an amazing time, I do not know if it was me who was just up for it but he was really connected today. I cannot expect it all the time,. But really glad it happened today. I needed to feel better about his life. Bless his heart.
that was good that he was so aware @PalSal and your day ended on a high.
 

Nannyslittlechip

Registered User
Apr 1, 2020
76
0
52
Liverpool
I wrote a bit about mum and took it in on her move in day. I called it “A brief history of Dot” a few pages about her and her past, how many siblings she has (deceased or not) how many children, grandchildren and great-grandchildren. What she likes and dislikes. Also a few pages bout food likes and dislikes, what interests her and what she can and cannot do. Obviously you can’t write it all down but it’s a great gift for the carers to know a bit about her when she goes in. I hope all goes well and remember it’s a tough time but you’re doing what is needed ❤️❤️❤️❤️
 

PalSal

Registered User
Dec 4, 2011
960
0
Pratteln Switzerland
Thanks for all the communication, TP friends. I have no expectations that good days will continue. I just pray for a few good moments. Continuum is too much to expect with a progressive disease, inconsistency is the situation.
Tuesday and Wednesday were not good days , he was aggressive and tried to hurt me.
But I am grateful for lovely time together on Monday. Those few good moments. It is such a sad disease where such a kind and lovely man, is no longer himself. Acceptance.