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Discussion in 'I have a partner with dementia' started by pevensey, Jun 29, 2019.
I'll try and remember all that AliceA thankyou.
No trying but do I may well old enough to be your mother or at the very least an older sister!!!
I'm 78 yrs young in couple months time, so do t think its mum, lol. But yes I really do hear what your saying AliceA and will really be determined, I promise..
OK, older sister then, the bossy one! I am sure you will be, keep in touch. Xxx
Yes, my virtual older sister I certainly will, take care and be good to yourself.
Sorry I haven't been on here to update on my OH admission to care home for respite query permanent stay, it's been more stressful than I thought it would be and instead of being free to do what I want when I want I've been sitting at home worrying if he's ok and waiting for phone call to say he wants to come home. I go to see him everyday but only for about an
hour and half or so. But have been advised to make it every other day or less, he doesn't seem very happy there and complains about most things especially the food and he doesn't sleep because their always checking on him in the night, but when I talk to the carers and and other staff they always say how lovely he is and he tells them he's happy and he likes being there, AND he always says how he enjoys his food and always clears his plate, never leaves anything. Tells me the food is rubbish, he is there for query 2 weeks but when his GP made the urgent referral he said that he definitely needed to be in care permanently now because of his extremely bad mobility and frequent falls, up to now it's just been the physical problems but the mental problems are appearing now also. I'm just really worried after the 2 weeks are up they will send him home and I know I couldn't cope with all the worry and stress of his immobility and continuous falls, it was beginning to scare me and I couldn't leave him for longer than an hour or so. So not sure what will happen this next week or who to talk to.
Your life has mirrored mine in many ways and my dilemma is feeling guilty about considering a weeks respite as I have hit a brick wall. I’m 63 and my husband is 77. He was diagnosed with mixed dementia about 13 years ago and I had to pack up work to be his 24/7 Carer 5 years ago. I’ve had no help in 5 years what so ever. Our son has never forgiven me for taking Ian back some 14 years ago after he left me for 11 months. Then as soon as he came back he was diagnosed with dementia. To whizz forward....he has deteriorated a great deal in the last 2 months and is in a wheelchair when we go out(not very often)and the aggression comes and goes. I’ve been considered for a weeks respite and now I’m feeling guilty and I’m worried that I won’t go through with it. Trust me, if the boot was on the other foot, he would never have cared for me with the diligence that I have maintained over the last 5 years. Should I feel guilty ??
Oh gosh youngatheart, NO you really should NOT feel guilty, but that's easier said than done. My hubby has been in respite for 2 weeks and is due home next Tuesday and I'm dreading it, I was a my wits and and our GP came to see him and was shocked how much he had deteriorated. He arranged immediately for him to go for 2 weeks but he says it's time for him to go permanently, as he's unsafe at home and I can't cope with his continuous falls indoors, and occasional aggression. GP is trying to arrange for him to stay an extra 2 weeks instead of coming home a d then trying to get permanent care sorted in the extra 2 weeks he's there. And I FEEL AS GUILTY AS HELL. Even though I only came back to him after I left him for 8 months before he was diagnosed because of his mental abusive behaviour towards me for years. When he was diagnosed I came back to him because
I FELT GUILTY HE WAS on his own. My heart tells me now that I can have a life for me now a life I haven't had for 50 odd years IF he does stay there permanently, my daughter is pleading with me to start thinking of myself for once, BUT I STILL FEEL GUILTY. When I go to visit him in care home which I do most days, the care staff say how lovely he is and how happy he is, chats to the other residents, eats well and generally seems settled there, but when I go to see him and it's just us chatting one to one on our own he's really grumpy and moans about everything there and complains about the food and stuff, like he is back home.. so WHY do I feel guilty !!! It's a nightmare Younatheart and I really do sympathies with how your feeling but you MUST agree to the respite although a week is not long enough, it will fly by, but it will be a week where you can have your
" Me Time " and relax because you really really deserve it. I'm 78 and hubby is nearly 80 and I want another 10 yrs to do whatever I have never done before, but not sure if it will happen. Please be brave and take care
Thank you for your response. Have had a mixed morning so far and it’s only 8.45. Hubby has had his abusive rant but won’t get washed although I did manage to shave him in spurts and he ate a banana. He has changed so much in the last week and the constant attention seeking is very wearing. I will push myself to accept the respite as I can feel that my empathy towards him is waning and that’s not good but this guilt thing is heart wrenching and he’s only got to be “nice” for a few hours and I wonder why I’m considering respite. But I guess I must (and will) do it. My hubby is so like yours. All sweetness and light in front of others but feels he can say or do what he likes to me. When I say “say” - he babbles with the odd coherent word it two.
I’m sure if I was put under hypnosis then I would say that I wanted him in a care home permanently now as 14 years has been a long time.
Keep in touch
Good evening young at heart, I'm so sorry, it sounds like your really struggling which means you definitely go ahead with the respite, you so deserve the break and have time for JUST YOU, doing what you want when you want. My hubby is due to come home on Tuesday but the rest home is advising me to let him stay for another week, they can see how upset and worried I am at the thought of him coming home, I feel sick and anxious. I'm always so scared when he tries to walk about indoors as he always falls and it's only a matter of time before he hurts himself badly. He seems to shuffle about a bit better in the care home but he does have someone with him all the time, they won't t even let me walk with him on my own. All the carers tell me at different times how happy he seems and he's chatty and smiley, but he's grumpy and hardly talks to me when I'm there, which is most days. It's very upsetting, but I've thought for a long time recently the last few months that he doesn't like me very much, he says he loves me when I tell him that I love him but I don't think he actually likes me. If that makes sense, and I'm REALLY ashamed to say that recently I've been thinking I don't want him to come home, and that's SO SO VERY BAD. But all my anxiety and palpitations and continues sick feeling and sleepless nights have a completely gone until the last few days when I think of him coming home. I'm actually crying while I write this because I know I sound really cruel.Hopefully when and if he comes home I'll feel better towards him, I must or
In sickness and health meant nothing in our wedding vows and our wedding vows were sacred all those 57 yrs ago, even though he hasn't given me a great 57yrs.
That's enough of me going on and feeling sorry for myself,
Young at heart, please start to look forward to your time for you, to relax, have fun with your friends and family and sleep well whenever you want to, you never know your OH may like it there and enjoy the break also, then you will feel happy knowing he's enjoying his little holiday. Take care of yourself, let me know how you get on.
You vowed to stand by your husband, you are doing that and will be doing that throughout his life ... You did not vow to ruin your own health and welfare and you did not vow to never accept support in standing by him
the staff are gently letting you know that both your husband and yourself are benefitting from him being in residential care, that his needs are being met and so is your need, and right, to look after yourself .. both of you are now getting the care each of you needs
Why exactly is that bad in any way?!
And cruel is definitely not how you sound ... You are a kind woman finding it hard to face a massive change in your life and fighting the fact that it is now in both your best interests to put your welfare first so that you are able to make sure your husband has the care he needs from you and a team of staff in support
Please listen to the staff when they tell you he is fine with them
But you are upholding your vows
You rightly recognise you can no longer give him the care he needs so you are arranging a home for him so that he can get 24/7 care. That is taking care of him every bit as much as trying to do it all yourself. And you will continue to oversee his care, make sure his needs are being met, be his advocate, etc.
Besides, he made the same vows to you and I'm sure he would want you to take proper care of yourself and would want what's best for you too.
Thank you do much Shedrech and Jaded n faded, for your lovely comments, they made me feel quite emotional, I fully understand what your saying and agree with what your saying BUT the big GUILT word wont go away, it's like he knows what the social care lady is going to say tomorrow as he was really grumpy and miserable today, didnt want to talk to me at all. I kept trying to give him hugs and make him smile but he was just snappy at me. He said that he wasn't going to get of of the care home and they had trapped him in there. I told him that if she did say he had to stay in permanent care I would move him to a bigger and nicer place where he would have a better life style just nicer surroundings. Where he is it a bit tatty and very basic but it was an emergency so didnt have much choice. I would feel better if he was somewhere nicer. I'm not sure though what would happen if he point blank said he wants to go home, I know I couldn't cope. But would they listen to OH rather than me.
Thankyou Donkeyshare, I laughed about your comment about the plate against the wall, I could have done that a few times recently., I'm sure it would help. I've got the ball rolling now so just waiting for meeting tomorrow at care home where S/S is coming to talk to OH and then me, bit nervous about that.
Hello sorry to hear your going though a bad time I feel for you my dads got vassual dementia and bipolar disorder hes had bipolar since when I was a child and its always been hard with my dad. Its like you feel traped you want to go out have peace have a break me time but there always a problem your running on empty but you still have to keep going I really feel for you and understand and you shouldn't feel bad for wanting a break because if you dont have a break you will have a breakdown thats how I see it. As thats how me and my mum are feeling sometimes you just need to think of yourself first as your Important to. And what is the best choice for everyone I hope you get the break you deserve and dont feel bad about having one even I know me and my mum well come to a point where we will be putting my dad in a care home and I know it will be hard upsetting the guilt will kick in (am I doing the right thing) (did I let him down) (what If I just carryed on looking after him ect) but be strong and know you matter also I wish you the best of luck sending you healing love and light.
Feel free to throw plates just make sure its empty, you dont need to tidy the floor on top of everything else. I have also now got SS involved because I realised that when I wrote what I did, I also need help! So indirectly thanks for helping me! good luck
Good evening Young at heart, loving the name BTW, just an update on hubby and me. So, he should have been back home today and I'm ashamed to say I was very nervous and anxious and dreading g it really. Thinking it would all go back to how it was when GP sent him for emergency respite. Well he has been given another 2 weeks respite while they set up some sort of care package at home, someone to come in and help him with personal care, like washing and stuff, and someone to sit with him to keep him safe a couple times a week so I can go out to socialise with my friends once a week, a d other different plans that he has very reluctantly agreed to, BUT o think when he gets home hes going to refuse to allow all that. Hes been very very angry and not talking much the last few days I've been to see him, and even more so since the S/S lady came there to talk to us about all this care plan, he didnt like what I said and accused me of not respecting him, I had already told him before she came that we must both say how were feeling and how I understood his angry outbursts were down to his illness and the situation of him being in care home for few weeks. Although his moods and accusations to me are just like he was before he became I'll, he was like for years, which is why I left him twice.So, I'm blitzing the house in the next 2 weeks getting g rid of rubbish, a d generally getting the house how I would like it, to keep me busy. Hes turned into a VERY untidy person just drops clothes everywhere, dirty ones in drawers and cupboards collects all sorts of scraps of papers and stores weeks n weeks of old newspapers behind chairs and under them, so it's a big tidy up 2 weeks and I'm loving it, Anyway will see how it all works out in 2 weeks time but I'm not holding my breath that it all goes smoothly, as I definitely know he wont adhere to the plans in place when he does get home.so we will prob be back to square one.Thankyou young at heart and everyone out there for your concern and all you advice and suggestions they have all been really helpful and pointed me in the right direction quite a fee times, I don't think I could have done or been as strong as I was without coming on here. THANKYOU
Took the grandson home yesterday and received a call from OH asking where I was and if I was staying the night! I explained that the traffic was bad due to roadworks but the answer was "well if I'm not in, I'm down the pub" and slammed the phone down. I felt so upset at his nastiness. Of course when I got home he was all sweetness and light as if nothing happened. I didn't mention the phone call. No point. But it's so hard and then today he made an appointment with a double glazing firm who turned up on the doorstep! I knew nothing about it. I feel so tired. I'm still waiting to hear if I've got AA. They said another 8 weeks! They've had my application just over a month. Hey how. Life's not exactly a bowl of cherries!!!!!