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Discussion in 'I have a partner with dementia' started by pamann, May 18, 2016.
I used to give a basket containing assorted tubes of hand cream which the staff appeared to like.
Thank you. Both good ideas.
Continuing heartache and guilt
It's a while since I posted a comment, which was When it was looking like the home wanted to move my husband on saying they could no longer meet his needs. I was very worried but the Psychiatric Nurse and support workers along with the doctor from the hospital were all very supportive. His medication was changed and that seemed to calm things down, he was put on respiradone. However, since then the local doctor has stopped both the diazepam and temazepam. Now as the effects of this change are being seen my husband is spending almost all his time walking the unit, he almost ignores me when I arrive ( which is every day except a few) and it takes a very long time to get him to sit with me. He no longer makes conversation but does know me and can communicate when he wants to. I can see that his dementia has become much worse since the time the home were unhappy with his behaviour. He used to throw his arms around me when I arrived and say such wonderful things to me about his feelings, and now I seem to have become a hindrance.
Today he was in another residents room when I arrived and was being difficult about changing his clothes , he had refused his morning medication and when he saw me said to the carer " and my wife doesn't care "
He was in a very grumpy unco- operative mood and remained that way , moving me out of his way because he wanted to carry on walking.
I know it's not the real person I married but someone I hardly know sometimes but it rips me apart. He is like a tormented soul and I am unable to help.
I still regret calling the crisis team way back in August 2015, which is when this nightmare started. Things just went downhill from there and I think a lot about where we would be now if I'd only just given him more of a chance before "pulling the plug"
I realise I would have probably been worn out by now if still trying to cope but at least I wouldn't be carrying this guilt around with me.
It's the rate of his deterioration which alarms me and I feel sure that at home he wouldn't have gone downhill so fast. I know he hates some of the other residents, particularly the ones who talk continuously in a repetitive sequence, in fact he sometimes mocks them!
Toileting is a big problem at times and he can be doubly incontinent. However because he realises this shouldn't be happening he gets very upset with himself and this comes out as aggression towards anyone who tries to help him, which is why he refuses help, particularly from the night staff.
As for me , well I guess I am as free as a bird with respect to home comforts, being mobile and being able to enjoy social events with friends. This all adds to the guilt.
I do try to practice mindfulness and just enjoy the moment. I read these words almost daily.
" Accept what is, let go of what was, have faith in what will be"
Sometimes it works, today it hasn't.
Hi Bugsbunny. I wondered how you were as you haven't posted for a while. You describe almost exactly my husbands decline and my feelings of guilt that I "pulled the plug" too soon. I feel even worse today as I didn't see him today and I usually go Saturdays, but I did go yesterday, but left earlier than usual, as he just wanted to walk round and kept on about "getting out of there". I try and remember the good visits I have, and the fact that the carers say he is ok when I'm not there. I will write those mindfulness words down and try and believe in them. Thinking of you xx
Thankyou for replying, I felt really down last night and have woken up this morning very tearful. I don't seem to cry as much these days because I think I must be getting a bit hardened to our situation. So I suppose on the days I am tearful it's when I spend too much time thinking about how awful this condition is. I am so fortunate because He was an absolute gem of a husband, we had such lovely times together and after retirement in particular travelled all over the world. There is so much to look back on and it's sad that my husband has lots of his long term memory missing so can't share in looking back when I talk about things we did. He just looks puzzled and I wonder if he thinks I am making it up.
I miss him so much I can't express how I feel.
I haven't been watching talking point for a while so wasn't aware of what's been happening. I am sorry to read about your husbands deterioration and because I know how this makes us feel my heart goes out to you.
This awful awful illness has got to be the worst in the world, destroying the person who is affected and persecuting the rest of the family. So many emotions.
Thinking of you x
Hello Bugsbunny, lovely to hear from you, thank you for your kind words, unfortunately this awful illness doesn't get better.
I haven't been able to reply to your private message, tge website is telling me I haven't made enough posts yet. It has me down as a new user with about 5/6 posts. Don't know what's happened except I was unable to log in for a few weeks now. Not sure how to get this problem rectified.
Its ok. You didn't need to reply. I just messaged privately as there was some personal stuff in the message. Hope you had a good day today. I didn't see my husband today - I have Sundays off as 2 lovely ladies visit then. I had a good day clearing up in the garden. It got so neglected when he was at home and i'm till trying to get on top of it. I find it very calming and theraputic as well.
Yes my husband was a lot better yesterday, was actually sitting down in the lounge. I didn't stay very long because I felt dreadful, not enough sleep the night before which always makes me feel wretched. Today I won't go because I'm having the day out with two ex colleagues. It helps recharge the batteries.
Just spent some time catching up as its been a while since I was last here.
Your description of needing to feed your husband, Pamann, resonated with me, as I've been cutting up Rob's food recently. Each time I've been there at lunchtime he's attempted to eat with his fingers, so I don't know what happens when I haven't been there. I cut it into bite size pieces, then remove the knife and he manages clumsily, with a fork.Add the eating with his fingers to the absence of hand washing, and I'm amazed he doesnt seem to be poorly.But he has been very constipated lately, and upset by it since they recently increased his meds to deal with aggression.
I made a decision in November, and went away for ten days to meet an old friend in Vienna, the first break I've had in years. Going through the airport was quite scary, as I've hardly ever needed to travel alone. When I returned Rob didn't seem to have suffered, I'd seen to it that visitors popped in to see him, and I don't think he missed me at all!
So what to do over Christmas? Last year we had an alternative Christmas at our house; the family all came and Rob was confused and unhappy. Christmas Day we were on our own, he was unaware of Christmas, and it could have been any day at all, he didn't even recognise carols which he used to enjoy. Now he doesn't know me unless someone tells him my name, and then I'm just another kind lady who visits.
Both our sons will be elsewhere, the one who brought and cooked last year is going to his wife's family this year, and our other son has invited me to France, where he lives, and will be over Christmas. He's bought my tickets and is coming to accompany me through the airports both ways. If I don't go, it will be March before I see him, and I know he would feel guilty at leaving me on my own. So I'll be relying on the Care Home and friends to pop in to see Rob. It's an awful decision, but there's no easy answer.....
I can identify with some of the things you say although my husband can still eat using knife and fork, and does still know people. In fact yesterday he stunned me by calling my friend by name when she came to visit.
This is the second Christmas my husband will have been in care but last year was very busy. Our oldest son was over from Australia with his family, and my husband only went into care in November. I cooked for all the family on Christmas Day including our second son and his troop. They went to see their Dad in small groups, and then after lunch I went and spent time with him.
This year the Australian branch are staying at home and I had planned to spend Christmas Day at the home eating with my husband. However our other son decided that I deserved a bit of fun on Christmas Day and has included me in their reservation at a restaurant. I will be able to see my husband before lunch and then again afterwards. I just hope it works well because it's an hours drive for me to our sons house.
Yes it is a hard decision, but then every day can throw up hard decisions when someone you love is in care.
Just before Christmas its our 50th Wedding Anniversary, it won't be quite like it might have been, but hey we made it!
I hope your Christmas works out well
Loved ones in a CH
Hello Anne, l have not been able to access TP for 2 wks, l had to delete my app, now l cannot re install it, l have been emailing TP they have had lots of problems. I find it quite difficult finding TP without the app.
I have just found your post, congratulations on your Golden Wedding Anniversay, ours was 2yrs ago but Ed didn't know he was married. Nice that you will be spending christmas with your family, also seeing your husband, l am doing the same as you. Wishing you a peaceful time, unless l can manage to reinstall the app, l will not be able to post very often.
My 88yr old FiL died 3 weeks ago and he was the main carer for my MiL, who is the same age and has Alzheimer's. my MiL was placed into emergency respite care whilst my FiL was in hospital and has now been given a DOLs order since he died.
I'm finding this hard to come to terms with as it feels like a double bereavement & I feel like I have abandoned her as we live over 300 miles away.
She has settled well into the CH despite contracting a UTI but keeps asking where my FiL is as she keeps forgetting about his funeral despite attending this.
I feel lost & not looking forward to xmas at all. Anyone have any suggestions for coping with all of this? My OH appears to be carrying on as normal???
I Am so sorry to read of your dilemma, but whatever you do you must Not feel guilty.
What else can you do apart from split yourself into three?
I found a counselling session on mindfulness very helpful. It's a way of teaching yourself to enjoy each moment and live for that. Don't think about what has happened because you can't change it, and have faith in what will be.
Sending good wishes.
My husband is about to move from a secure geriatric psychiatric unit on a hospital to a care home. He was hospitalized after assaulting me in a public place. He is 69 and has FTD, is mobile and continent. I'm bewildered and apprehensive. I like the home he is going to, and they have room; the move is being presented to him by family and doctors as rehab after the hospital stay. I am sad, but not guilty; it was not safe for me or ultimately him when he was at home. He could have hurt me badly if I hadn't been swift on my feet, and then what would have happened?
Sent from my iPhone using Talking Point
Thank you for responding & your advice. I normally try to do yoga to unwind but have missed the last few sessions due to all the travelling back and forth on the motorway. Hope to get back to this so I can just switch off & grab some 'me time'.
Thank you for your kindness.
Wish Cristmas was over
That may sound miserly but this season is not helping Anne.
After being stable and happy over the last months, all the extra activities, festivities, cards and presents at the CH are causing stress and her confusion and other things are worsening.
I wish that I could take her away to somewhere away from it all until it is all over and things are back to their usual routine.
Loved ones in a CH
Christmas is a bad time for the residents in a CH, they do not like the disruption, in my husbands CH two days before christmas we had a Pantomine too much noise, some walked out, some started shouting telling the actors to shut up. Christmas day was a nightmare lots of visitors in the morning, residents very grumpy, not used to so many people. They do not remember what christmas is about, it upsets their routine, tomorrow we have our raffle with entertainers, it was cancelled before christmas, due to illness, thank goodness after tomorrow it will be over. We can then get back to normal.
My husband had a nasty fall a week ago, he also has a chest infection.
I hope that Anne will settle now that the festivities are over, of course we still have the new year to celebrate, that means loud fireworks which agitates the residents.
Thinking of you Geof, it is not an easy journey for us all.
Sorry to hear of your husband's fall and infection Pam. How are you, my friend? xxx