Desperate
- Thread starter Jacquis
- Start date
I absolutely sympathise with you! I have my mother living with me and she bares not even the slightest resemblance to my mum! I recently described it as like living with an alien! It is the most horrendous disease and my heart goes out to anyone struggling to care for a PWD. My dad also has dementia and is currently in hospital, he lives in a care home and it rips my heart out every time I see him. Everything about this disease is destructive and vile it infects everything in its path!
My warmest regards to you, sending big hugs x
My husband is similar , doesn't sleep anywhere near enough at night and now spends much of the day talking to various ppl in the Mirror . Sometimes he laughs out loud like Mr Rochesters mad wife. Mostly he seems to enjoy it though 'communicating' with friends and relatives who he has only seen at weddings and funerals for years.
I am very lucky that he neither wanders from the house nor does he mind me going out though. I could not bear to be under 'house arrest' as some of the members here are. My biggest problem is broken sleep.
I am very lucky that he neither wanders from the house nor does he mind me going out though. I could not bear to be under 'house arrest' as some of the members here are. My biggest problem is broken sleep.
Jacquis
Have you thought of putting yours in a care home for a weeks break? I did this first time end of September so could have a weekend break in London visiting DD and little grandson. I am hoping to arrange another soon. Its very expensive but compared to F/T care home fees its not in the same league over a year.
Have you thought of putting yours in a care home for a weeks break? I did this first time end of September so could have a weekend break in London visiting DD and little grandson. I am hoping to arrange another soon. Its very expensive but compared to F/T care home fees its not in the same league over a year.
I believe this is known as host/hostess mode, where they are all smiley with family/care home staff but grumpy and miserable at home, they take it out on the ones they are closest too. When I read some of these posts I realise my partner is not nearly so bad as some but I guess worse is to come, it's certainly never going to get better. Sunshine2* you deserve a huge gold medal, a trip to the Caribbean, a week's pampering at a spa and more for dealing with everything you have for 30 years, life really isn't fair is it - I sometimes think the ones who are strongest to deal with the trials of life are the ones given the hardest challenges. I hope you eventually get a happy peaceful life - what worries me is that we are so used to dealing with everything that is thrown at us and so wrapped up in the job of carer that when we no longer have the job (I guess it will end eventually with whatever outcome) will we actually know how to live a 'normal' life!
Have you tried asking the GP to do a home visit?
Your husband may benefit for a referral to the local older persons services they are a team of specialists who work with persons with dementia and get them access to suppport. GP can organise.
The other suggestion is ask for a needs assessment from the local authority. You can have an assessment as a carer as well,
You can also apply for some non mean tested benefits, which would give you some extra money to pay for someone to come on an help you, sit with hubby while you go out, etc.
Thank you all so much for your invaluable help, it is comforting to know that I can 'talk' to people who truly understand how this condition effects those we love, and the advice is helpful and practical. Although people and family sympathise with the situation, they cannot understand fully the devastation that is going on around you.
Hi Jacquis:
Sounds exactly like my husband, sits & sits and passes the day away doing absolutely nothing. Wanders up & down the stairs, lies in bed for awhile, comes back downstairs. Can't turn on tv, can't answer the phone, just waits. Difference is I have carers come in 5 days a week to clean him up, help him with his shower, getting dressed & shaving - it's a big help for me as I don't have to worry about him not getting cleaned up, they also check on me when they are there. It's a social event as we don't get out much now because of his incontinence. He has grown used to having them around and enjoys when they visit. It's also good because he can begin to have others help him when he goes into a care home. Other than that I try to take as many breaks as I can, it difficult at times, but you need to. I try to get him to bed by 10pm so I can have my me alone time. I watch programs on tv so I can relax with a nice cup of tea before bed.
Try to get some carers in for him, they will be a great help for you also by giving you a bit of a break. It's the social aspect as well. They check on how you are doing and can give you tips on doing things that might ease your burden a bit.
Good Luck & Take Care. Much Love, Patience & Cyber Hugs Coming Your Way.
Your situation is very difficult @Jacquis and I have every sympathy. The difficult feelings come in waves. One carries on for a while and then it overwhelms you. My husband hardly ever goes out now, partly because he is physically weak and partly because when I do make the effort he gets anxious and over breathes. I have ridden the blows of decreasing memory, inability to perform basic functions, constantly dozing or sleeping, lack of concentration and finally now he is unwilling to eat. Fortunately I have had support from my GP regarding management and the dietician yesterday who advised me on the food issue. Today is the first day when I have not beaten myself up about getting him to eat and this is a relief. He is mostly compliant with my instructions but giving them takes its toll on me. I take each step at a time, leave him for a walk telling him something that he will accept because he is very clingy and dependent. You are doing a great job with little reward but we all know on TP and hope a bit of moral support helps.
Thank you all so much for your input, the tips and advice is most welcome and constructive. I have managed to put into place some help which should start beginning of 2020, I am so looking forward to having some free time and not being a 'house prisoner" but I am wrestling with the thought of M not being happy about the situation and dealing with that. I keep telling myself, that it can only be a positive thing, people with experience of Alzheimers may be able to enhance his life, more than I can, they will encourage him to be more motivated and not to just sit looking at a blank wall. I can have a couple of hours to myself to recharge and then to continue to be his wife not just his carer
I am so glad you have taken this step. It doesn’t solve all problems but it’s a start. Wrestling with thoughts seems to be the lot of people looking after a person with this disease. We want to do what’s right without much if any help from the sufferer. I think that’s a part of what makes TP so good, it reassures you that other people have similar worries and you can get it off your chest and get some comforting and helpful replies. We must try hard not to beat ourselves up because then we can’t help our loved ones.
