Thank-you Jakki. Am beginning to realise that hubby’s birthday is more for the family and me. Clinging on to the man he was and we still want. I’ve bought him an electric razor. He ( I think) threw the last one in the bin at the 1st main hospital. Am certain he will use the new one. The staff help him wet shave if he wants. Very often he’s unshaven. Will be able to shave himself with this I hope. If he doesn’t want to well so be it.
It’s not horrible to say about letting go. It’s a sad fact. I’m very slowly learning to see that. He still has lots lucid times. Reads the papers etc and happy to talk football. I look everyday to see what’s on the news esp footy so we can chat. Can sit quietly watching the TV together. Try to treasure the good moments. It’s very raw and painful still. Unfortunately he has deteriorated. He is well cared for in the home. No where is perfect is it. Xx
Hi. I’m struggling not to be negative today. Since hubby’s illness started to take hold, he has targeted someone to be be really horrible to and about. The assessment hospital it was a patient he thought was a peodphile. In the nursing home it’s the fiesty lady I’ve mentioned before. The staff told me yesterday that he shouted at her for putting a cup on a tray. It seems she cried and was frightened. Each time he set eyes on her yesterday he grimaced and said nasty things about her. I feel angry with him. I know it’s the dementia but part of me wants to tell him a couple of home truths about it. It’s been on my mind during the night. Made me feel I just don’t like him anymore. I certainly don’t like seeing what appears to be almost bullying. Took over my thoughts instead of focusing on the unexpected but lovely evening and meal I had with family at my daughter’s home. Grr to this illness and taking away my hubby. Sorry, vent vent vent xx
Vent away all you want Pet - many of us have been where you are now and we’ve come out the other side in one piece.
One of the worst things with dementia is the personality changes; it would seem that that part of the brain that controls how we behave in public goes out of kilter and we say/do things that we wouldn’t normally do - so a gentle, loving man suddenly turns into a hostile ‘monster’. You, and the staff in the care home, know that it is the illness that is making your hubby act out of character. Remember too that he is in an unknown place and probably a bit frightened of what is happening to him - hitting out (verbally or physically) is his way of coping with the frustration.
I used to liken dementia to being lost in a foreign country - you don’t know where you are; you don’t know the people; can’t speak their language - anyone would be scared and likely to lash out in that situation. But if you stay in this foreign country long enough you start to recognise where you are; begin to recognise some of the people and start to understand the language.
Susieq. That is such a helpful way of helping me to see beyond my hubby as he was. He certainly wasn’t perfect in many ways and not always the most patient of men. Wasn’t the type of man to open the car door for me or help me put coat in in a restaurant ( not often anyway!) I never expected that. He was my rock though and I still feel in shock at times. It’s good to express how I’m feeling on the forum Then I don’t have the need to burden my daughter’s with the feelings of the day. Xx
Hello everyone. Some of you know I was dreading today as it’s hubby’s birthday. Well it went well really. He was a bit out of it at times. Only remembered I think when I said happy birthday to him. Was pleased with his razor. My elder daughter granddaughter and son in law arrived after an hour. He seemed pleased and happy with the gifts. Not the response we would have had in the past but there you go. Then younger daughter and family arrived. They brought the dog who hubby has never met. We all went to the garden and luckily the dog took to hubby and he fussed her lots. The boys played footie with son in laws and the dog had a whale of a time. It was quite peaceful and comfortably warm. Cakes were passed around. He asked for his car keys! I quickly said in your room I think and then chuckled at the dog for running so fast so that was a distraction. Somehow managed to leave with my daughter although the guilt monster was heavy on my shoulder. Glad it’s over to be honest. Another milestone and very emotional.
J ( eldest daughter) took goodies for staff and residents and visitors. Let the nurses dish out to residents though for dietry reasons. The nurse told her who she was ‘safe’ to go to. One lady made us smile. In a very posh voice she said " well it would be deemed as extremely rude if I declined’! Shocked even the staff esp when she promptly took 3 little cakes and squirreled them lol. I know I rambling, think it’s with relief?
Well done, to all the family, shows how much he is loved. Be kind to yourself tonight, expect to have a “deflated balloon” feeling - can’t think of any more sophisticated way of describing it right now!
Hi Pet, Sounds like that was much better than your worst fears predicted. The dog was a brilliant thought. Well done that daughter. Maybe she could make canine therapy a regular thing during this summer?
The milestone has passed now, and it won’t be a bad memory.
I’ve been to se Mum today. She is wavering about staying. They had warned me she would. I’m taking a day off tomorrow. Letting her settle into it a bit on her own. I hope she has a good day. You keep your chin up.
x
Elaine
BB. Did have deflated balloon feeling last night. Felt the loneliness creeping in. However, I slept well for a change. Dawn chorus woke me too but I managed to drift off again.
Elaine. J2( younger daughter) was so pleased that the her dad and the dog were happy with each other. Was a plan she’d had for ages. Is looking forward to the summer months when the canine therapy can happen regularly. It’s less oppressive outside. The boys are happier as well esp the 13 and 6yr old. They can play and still give Grandad some time. He seemed to enjoy watching them play which is what would be happening pre dementia days. Confession time now. I really do not want to visit today. I will be, as he won’t get visitors. The guilt monster will get to me if I don’t go and it is for even admitting that I prefer not to.Watching him in such an awful situation. Having to try to stay calm and happy and being one step ahead can be exhausting. Oh well, it’s a part of my life now so will have to carry on.
Hope you can settle today. Enjoy a stress free Sunday (((hug)))
Pet, glad it went well. Some care homes do have animal visits from Pets for Therapy. MAy be worth asking the home about?
I used to use the Forum as a way of avoiding boring my friends about my woes. Rant away. We have all been there.
I visited mum every other day. I dreaded going so much that I couldn’t face it every day, plus I was working. Every other day seemed enough to keep them on their toes. It also gave mum and the staff more time to get to know each other. Each person is different though. Others got no visits at all!
Morning Anne. Yes they do have a dog therapy visit. Once a fortnight or month I think. A very clever dog who brings joy.
Lots of residents don’t get visitors from what I gather. I lady goes once a month for 20mins max to her husband. She just cannot cope with the loss. Feel for her. Expect some haven’t anyone who can visit. It’s each to their own coping strategies. I do get a stomach knot every time I go to the nursing home. Am looking forward to Thursday. My granddaughter is at Stratford on Avon college. Has a four hour slot so we are going to have a sandwich, cake and tea. Then a mooch. My grandchildren always call the time I give them individually nanny day! Lovely that they want to. Afraid it hasn’t happened since hubby’s decline. The 6 weeks school hols I will though. Have lighter purse on those days lol xx
Strange night I’ve had. Kept fretting that the nursing home is the place hubby has to live now and it’s a sad existence for him. Questioning myself as to why I can’t look after him at home. Of course,logically I know the answer. I felt I am failing him. Head tells me I would be failing him if he were at home. Heart is clashing again with my head. He is declining so I assume it’s a part of this slow grieving process that kicks, esp in the early hours. My strength today is flagging. Xx
Allow you strength to flag. Just think how much caring you used to do, it will take a long time to get over. Incidentally, have you remembered to claim your “single person rebate” for council tax as your husband will no longer be living there. I know it’s upsetting, but I’m sure you don’t want to pay more than you need to.
Pet, I’ve been catching up with your story and can see how much the last few weeks have taken their toll. I think maybe you’re a bit similar to me, in that the visits to the nursing home are made worse by the fact that you notice the sadness of the other residents’ situations and their families too, so the sadness of the place can weigh you down at times. Your empathy makes you kind, but increases your own load too.
Try to reduce visits a little and have some more days where you make an effort to block out the whole subject of dementia and the sadness of it all. I know how hard that is, but distraction is key to enjoying the days off.
Pet I’ve got that stomach knot today after not visiting yesterday and wondering whether she sat in her chair all alone all day. She has a visitor now, her long time cleaner whom she is very fond of. That might cheer her up or might make her more determined to get back home. I just don’t know how to manage the situation if she tells me this afternoon that she can’t stand it and wants to go home. I feel as if I’ve tricked her in a way because she’s always said she would NOT go in a Home and I persuaded her to give it a try with ‘the option of staying’ if she liked it. Well I need her to stay and all the carers etc agree that she needs to be cared for 24/7, but she thinks that she can manage at home. She can’t but that’s what she thinks and I feel awful about making her stay somewhere she says she hates. However other visitors and the staff are telling me that she is different when I’m not there and saves up all the flack for me.
I can’t see the wood for the trees as they say.
Let you know later how it went this afternoon. Hope you are having a good day, or at least not too bad.
Elaine
Hello Elaine. How are things with you? The dreadful mixed emotions take their toll don’t they. Hubby said to my daughter yesterday that he had felt very down at being stuck in this place. I was there as well. I didn’t hear her reply, but she struggled not to let the tears show and I had to bite the side of my mouth. I was tempted to cancel the time with my granddaughter, but asked myself if it would change things. Of course it wouldn’t, but it took the shine off the time. Xx
Hi Pet,
Just now, right this moment, not too bad thanks. I’ve been cleaning and gardening all day and haven’t visited Mum and it’s her last day of Respite, so been rather bothered in case she remembered that and thought she was going home tomorrow. My daughter and granddaughter made an unexpected visit at tea time and said they found her quite bright. In fact she told my daughter that she felt safer at the Home than she did in her bungalow and just had to get used to their ways. That was such a relief to hear. They left her eating jam on toast and custard, with cake to follow. She’d rejected the soup and sandwiches. Hates sandwiches and soup is for lunchtime!
So my tummy has unknotted a bit. I do have to get a load of organising done in the way of cancelling phone, Sky, getting all the borrowed equipment back and sorting out the bungalow, which is going to take forever. Luckily there’s no rush. I was in tears this morning because Mum has so much STUFF. I was thinking of her in that room with only a few of her things around her when she has been sitting in the middle of decades of keepsakes. Not that she looked at them much but she knew they were there. Pictures, photos, ornaments, china, furniture, cushions and rugs. The list goes on and on. Daren’t get rid of anything because as soon as I do she is bound to ask for it.
Anyway. Feeling more positive at the moment.
How are you doing? Do you feel that the staff at your husband’s Home treat him kindly and that he is as content as possible? It’s hard to face the fact that they will never be happily at home, doing their own thing, again. How things change.
Big hug back to you.
Elaine
I feel they treat him kindly. Some staff are more compassionate than others, and I’m noticing that more effort with his appearance is made by certain staff. Another visitor told me his wife had been in 3 other homes. 2 had closed down. Not sure about the 3rd. However he feels this one is by far the pick of them all. Admits it’s not perfect but where is? Another lady who I’ve befriended asked for her husband’s top to be changed yesterday. She said it was soaking and it worried her re his chest. I think they need more staff. Apparently they are recruiting. I do notice that the staff won’t go on fag break on their own. Personally I feel they should. Somehow I’m going to bring it up. I know if they are smokers they need to have a ciggie. Not disputing that.
Still feels early days for me.
I definitely understand about seeing things that your mom treasured. Lots of hubbys things are here. Only so much we can take though isn’t there. I have to be careful. If he’s having a lucid time he will wonder why I’m taking them. He still thinks he won’t be staying. When we feel theres no more tears they start again!! Xx
So pleased you feel a little more positive. Xx
It must be ‘wobble evening’! I’ve just had a bit of a wobble over MIL. This time of evening, when the work is done, and I’ve sorted supper etc etc, and I sit down with a glass of wine and ‘chill’, I always do a quick ‘night night’ to all my family photos…and I’m afraid seeing MIL next to my son, her grandson, induced a quick wobble. I suddenly felt SO bad that she is two hundred miles away, the last connection with my husband (other than his bro in the USA), and I’m not with her…
Suddenly all just seems so, so, so sad…
Two thoughts however - re ‘stuff’, I often refer to things when I visit MIL and take her out, and always say to her ‘I’ve got all your things safe in my little house, so if ever you want something let me know, and I’ll dig it out’. I just like to remind her that she has a lot (lot!!!) more than what she has in her room at the home. (That said, she never asks for anything as the dementia is too far gone, but all the same, I like her to know she has it, and it’s safe.)
re ‘permanency’…I tend to always use the phrase ‘the place where you’re staying for now’ or something like that, to imply it is not ‘home’ and we both know it isn’t, but it’s ‘the place you’re staying’. I wonder whether also adding something like ‘while you’re not too well’ or something? I do think it can help to imply that the stay is ‘temporary’, ‘for the duration’, and that ‘when they are better’ they’ll be coming home…or maybe ‘when you’re stronger’ or something like that.
I think, though, our sadness is just that - sadness at not just a frail ‘end of life’ but ‘end of life’ at all. Mortality is sad.
Oh dear Jenny. I understand and feel sad for you.
I always remind hubby he’s had a stroke and that he still needs the nursing for the time being. Sometimes he agrees. Others he will go into denial. I have to find a distraction…
I darent have a glass of wine. Would finish the bottle lol. But I will chink my cuppa with your glass. Here’s to knocking the wobbles away and the guilt monster. Elaine, have you a drink to do the same ((( hugs)))
I’m on my 4th coffee. Hubby out so not having glass of anything as I haven’t got rid of that ‘on call’ feeling. The Home is only 10-15 mins away but just in case someone rings, I need to be fully able to drive.
I might sneak a glass when he comes home.