Feeling exhausted

My partner was diagnosed with cbd and dementia two years ago although it took nearly three years for doctors to take his condition seriously. I feel that he has deteriorated rapidly . He has 2 carers to get him up and to bed and I am unable to get him in the car by myself. This is causing a big problem as wheelchair taxis are very expensive. He can weight bare and I have a rotunda to move him from his chair to commode and wheelchair. Over the last year it has gotten really difficult for me to get out,although I have 6 hours sitting service.This is causing me alot of stress as I have a big family am un able to spend quality time with them.Brian has never been sociable and never wanted to be involved with my family and his daughter and brother have never been close.Although I try to take him out as much as I can he is now saying he is not enjoying it and prefers to sit in his room. I feel very isolated most of the time as if I invite people round he is forever calling me so by the end of their visit I am exhausted. I would love to talk to someone in the same situation .

17 Replies

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  • I really feel for you, it is isolating enough with the added problem of not him not wanting to go out. I haven't hit this wall yet but Ben does need to be encouraged to get out and I sometimes don't have the will to get him out during cold cloudy weather. He won't go into cafes anymore because of choking so it's difficult to know where to go when the weather isn't particularly good. I do have friends round and he is very good about it and we are lucky that our family will visit but all live long distances away so can't just pop round. I think the lack of spontaneity about when and where to go out are one of the things that really get me down, it feels like you have very little to look forward to and every arrangement you make is a hurdle to jump over. We went to friends for a couple of hours last week and it was like preparing for a house move. When we eventually got into their house Ben was so tired he fell asleep and refused any kind of drink because of embarrassing himself by choking. After a couple of hours we had to do the move in reverse and I was shattered by the time I got home, felt it just wasn't worth the effort. I know it sounds very negative and lots of carers on the site seem to have more enthusiasm on going out but I find it soul destroying wandering around in the cold with little choice on where to go, garden centres are loosing their appeal!

    Love Kate xx

  • Hi Kate it was good to hear from you. Has Ben got cbd? Brian is ok eating and drinking but is unable to feed himself. He can no longer walk and like you the efford of just going for a walk is a major expedition, by the time I've got clothes on him ,he tends to sit without a shirt on as he gets too hot,even in the winter,and got him in the wheelchair only to be told ten minutes into the walk he has had enough. He likes to watch films and listen to music but finds it difficult to use remote controls so I seem to sit down for a cuppa and I am summoned to turn channels etc.It certainly is an awful disease but as he wont go to a day centre or any other organisations I feel it has taken my life away as well which makes me feel very guilty. I hope you have a good day at least the sun is shining !!

    Love Cilla x

  • Hi Cilla, at least Ben is prepared to go to the hospice day centre every Tuesday, he was very reluctant at first and only joins in the trivial pursuits game that a few of the regulars seem to enjoy. The staff make a fuss of him and I think he actually enjoys the day but is exhausted when he gets home. The staff and volunteers are brilliant and support me too, they are a life saver to me. It is the only time I feel safe and comfortable leaving him. Ben has PSP and he has deteriorated massively in the last few months, the hospice staff have commented on his decline. Since he broke his hip last June his mobility has worsened considerably and he has become very rigid. His eyes are badly affected and he is no longer able to focus properly, he says everything is blurred. However he is very on the ball, even though his responses are slow, never sure if that is a good or a bad thing for him. Ben can't now change channels on the tv or sit himself up in the hospital fed using the remote, he is totally dependent on me for everything, poor man. His main interest now that he can't read is listening to radio 4, he absorbs all of the news but can't discuss because of his communication difficulties. He is becoming trapped in his own body and there is nothing I can do to help. I spent my free time visiting the dentist for check and hygienist then to buy sat nav as new WAV vehicle doesn't have one and that just about filled the day, oh did have a coffee and sandwich in Waitrose as no breakfast before the trip to hospice, and so it goes on!!!

    Love and hugs

    Kate xxx

  • This is basically the route my mother took (she has CBD). I'd say she had this phase about three years in from the diagnosis ( I emphasize diagnosis -because I believe she had this condition for quite a few years before an official diagnosis.) She not only didn't want to go anywhere she started not wanting to see anyone, this even included close family members, which I found particularly hard to deal with. Her care needs moved increasingly toward full-time and my sister moved in with her. The care quickly became overwhelming and very isolating for my sister - I'd say within six months. Mom didn't seem to have an understanding of how complicated her own care had become. My sister passed away at the beginning of this year and we didn't have any other choice but to move her to an assisted care facility due to the shortages in our area of private in-home care. Probably doesn't help much but maybe just validates what you're experiencing.

  • Thank you for your reply,I am sorry to hear of your sister's death it must have been a very difficult time for the family.All family members and friends including Brian's side of the family feel that I should find a care home for him as he has become increasing demanding and verbally abusive. I ,however, feel that until he deteriorates more I am still able to cope . How is your mother now, is she settled in her new surroundings? It is comforting knowing that there are people experiencing the same things ,there seems to be so little known about cbd and everyone seem to deteriorate in different ways.

  • Well, I think she is getting more consistent care - which I equate to better, but she doesn't have someone to jump at every beck and call now - so she probably feels she is getting worse care. (Eggs cooked exactly the way she likes, when she wants - with specifications on type of eggs, pan to use, etc. - really exhausting for care person - felt like she was using people just to be a surrogate for how she would be going about her daily business if she could - with no consideration for them or for the reasonableness of demands.)

    Last few days there had been a resurgence in unreasonable demands - she has gotten more creative in her threats (stating she would refuse to eat if I didn't call the chair salesman Immediately), and manipulations - throwing in meltdowns when you don't do something she demands you to do. The hard thing with all of this - is this is NOT my mother's core profile. Prior to this disease, she was a very giving, intelligent person. So the behaviors coming from her are so foreign, they can be quite offensive or hurtful - it's hard not to react to that and to keep in mind that this is the disease, not her.

  • Hi Cilla

    I feel for you as I am in the same boat when he's home .

    He has 2 carers 4 x a day and I have two 4hr sits per week.

    He is totally housebound and we don't go anywhere as I have health issues so I'm basically housebound other than the 2 days I get out . I have a sister and she has health problems so

    I see her when I'm out .,and other family don't see anybody

    We have a grandson who's in the forces and when he can he comes home .

    Like a lots of us it's not just the people with the illnesses that's affected but the carers too

    Hope you can find time for yourself at some point in the day

    Sue x

  • Sue

    We are all scraping around for help? Well I need a different kind of help now as I am still unable to fill in all the forms you get afterwards! I have a total phobia about them!

    Before when G was alive we had carers come in and he was double handled too. However apart from my son taking me shopping we were alone! My daughter came when she wanted to which wasn't often! She is even worse now! I keep asking my son to come for tea but he won't. He just wants to be off all the time!

    I have no other family here apart from my two Grandchildren. One just turned 14. She stays with me some Saturdays. My Grandson is only 8 since last week. He gets upset because his Mum won't bring him to see me. She only lives around the corner from me! Maybe 3-4 minutes walk at most! However as he pointed out to me he can't cross the busy road! He wants to come and enjoys being here. She took the keys I had when G was dying,so if I go to her house I don't even know if she will be there. If I ring or text she doesn't answer until it suits her!

    So illness and death does terrible things to families. Some who have a big family are lucky. Any friends we had just vanished! A couple have reappeared but I would never rely on them for anything.

    Take care Kate and look after yourself.

    Marie x

  • Hi Marie

    Hopefully you can try and relax when your going through forms

    Yes and I know that feeling nobody around even if it was just for a natter.

    Glad that you have granddaughter stay some weekends and hopefully the little will come soon.

    Most of Archie's family live in Scotland and they were a large family but slowly dwindling down now .

    Anyway Marie are you ready for your garden doing tomorrow lol

    Sue xx

  • Cilla

    I really feel for you. Although my husband wasn't abusive his physical condition was much as you describe. We never went out anywhere unless we got a black cab and with family.

    The last time we went out was just over a year ago for his birthday. I noticed he was really embarrassed as he was leaning to one side and struggling to eat. My son ended up feeding him. It broke my heart to see him like that. Sadly he died in February this year.

    He was told initially he had PSP with signs of MSA. Then a month before he died was told it was MSA. I actually think the original diagnosis was the correct one. Who are we though? We just see the person every day?

    My husband ended up in a Care Home but it wasn't something we decided! One morning I was told his legs had gone so assumed it was progressing. They kept him in bed and in 24hours he got the most sore looking bedsores. So I arranged for him to go to a Care Home we had used for respite before. I thought it would only be for a week maybe 2 max.

    However after 24 hours there he became very ill and was admitted to hospital with pneumonia which also explained his legs giving way. When he got out of hospital he went back to the Care Home so we could sort things out for a hospital bed.

    However I was alone trying to sort it all and trying to visit too. In the meantime he was assessed for CHC. I was told he would get it.

    We waited and waited and were only told around Xmas that he had been awarded it. By now however he was bedbound because they expected him to stay in a chaur all day and he jyst couldn't manage it by then. He was also and drooling a lot. In fact I realised there was no way I could care for him alone. He had broken his right arm 12 months before so really couldn't do anything for himself. His voice had started to go too.

    By the time he died in February he was only able to say one word. He couldn't feed himself and was in hospital with aspiration pneumonia. He died after 3 weeks. He was to be moved to the Nursing Home we wanted but that didn't happen.

    PSP can move very quickly as can MSA. I don't know if it's the same with CBD. I know everything happened so quickly for my husband that it was a real shock. He seemed to go from one crisis to another.

    Maybe you should ask how long he is likely to have left? Care Homes are not the right place for a person with a neurodegenerative condition. If you are really struggling and can't go on get him into a decent Nursing Home.

    My husband appeared to be in a good Care Home but I really wish the CHC money had been enough to allow him to go to a Nursing Home near where we lived and which we liked. They won't allow you to make up the difference which is mad! They only agreed to the Nursing Home we wanted 2 days before he died!

    These conditions are so sad for everyone. For the carers who have to give up their lives. For the person with the condition as they can no longer do anything for themselves eventually. It is all very sad and I am very sad for you both.

    Marie x

  • Dear Marie I was so sorry to read your letter,it really shouldn't be a struggle to get the best for your loved ones, what a difficult time you had, both of you.

    Brian has been into respite a couple of times and we have had some bad experiences. Although I insisted on a nursing home he was placed in a dementia home,thankfully only for the weekend, I had explained to Soc.Worker that his disability was worse than his dementia at the present but in their wisdom they chose to ignore thatl.

    I was trying for care at home but they said it wasn't possible .Fortunately the last time he went to respite was a lovely nursing home within walking distance and he seemed happy there.I have been informed that they can't promise respite there in the future which is very upsetting as he isn't refusing to go back which he has previous places.

    I think living with unknown is the worse thing and not knowi g what each day is going to bring.

    I hope you are managing to live your life to the full now after the many years you spent caring for your husband.

    My thoughts are with you xx

  • Cilla we had a terrible time. If I hadn't gone through it I wouldn't have believed people could be treated so badly. Sadly they are. I am still trying to come to terms with the feeling I let him down, although I seemed to spend all my time fighting for him.

    He wanted to be at home but it never happened. He wanted to die in the Hospice but that didn't happen either. My daughter blames me for that and really doesn't bother with me very much unless I ask can I see my Grandson.

    I am struggling with living alone too. I would actually love him to be back again even though I was worn out! If I could go back 12 months I would in the blink of an eye.

    These awful conditions and the problems they bring ruin the lives of all. It is so sad. Some days I just don't leave the house. Others I feel a bit more positive. People think the answer is a prescription from the doctor but it's not. I have to learn to live with this as it's life in all it's cruelty?

    Take care Cilla I know only too well what you are going through. Give him lots of love and hugs that is the best advice I can give you. Keep a close eye on him and make notes if you have the energy? Then you can tell the neurologist what is happening? We went 10 months in between appointments and he was a different msn by then! Take care of yourself Cilla.

    It is very hard. Maybe you will have to use your family to sit with him to let you escape for a few hours even if he is not happy? You will have to try to explain to him? Good luck with it all. If you want to chat with me or anyone else please do. You are not alone.

    Marie x

  • I am in almost the exact situation, except that I only get 3 hours sitting a week. I can't get husband in car at all, but my son and daughter just about manage to push him in their cars and drag him back out. When I have a visitor I am called constantly. Many friends keep a distance , they say to me ...keep in touch .... I have got so isolated I no longer try keeping in touch with folk who can't keep in touch with me. In my 3 hours I buzz around like a bluebottle with list in hand , by the time I've driven to town and parked and allowed time to get home I've actually only got 2 hours. I could scream. I so agree with everything Kate says, the effort is horrendous, but I too think it's the lack of spontaneity that's depressing . Love and best wishes as we all struggle on

    GW xx

  • Oh my goodness I am so sorry you having such a bad time.I was feeling sorry for myself but now realise that are people worse of.I can't understand why you only get 3 hrs sitting service maybe different councils .I know what you mean about friends not keeping in touch very upsetting at times. How long has your husband been suffering? I have just popped out for 30 mins while Brian was watching a film and had to change his clothes when I got back as he had an accident ! And so it goes on.

    Keep smiling xx

  • Hello there, well my husband Bill was diagnosed in July 2014 by a neurologist but the symptoms really started July 2012. On hindsight , probably another 2 years before that !!!! We had to move to a bungalow in Sept 2015 to enable us to cope. He could walk then , but now has no mobility, can't use his hands, frontal tempural dementia and so on. Has to be hoisted. Yes I think it's different councils with the times for sitting help etc. However carers shower him and put him to bed each night and this morning I had a call to say that as from Friday this week they will also get him up each morning. He has a catheter so hopefully I'll only hoist for bowel actions !!! He is agitated all time, we get little sleep. Today I met another carer with husband who has psp, he still walks but spends all night filling cups with boiling water constantly and turning the lights on all night long. No two cases the same is definitely the motto. I think we all have a different cross to bear. And we soldier on......

    Best wishes xxx

  • Hi you seem to be coping extremely well ,it is amazing where the inner strength comes from isn't it. Do you get any respite at all it certainly sounds as though you need it.

    The more you hear about the disease the more horrendous it sounds ,what a bleak future to look forward to , must just li ve for the moment.

    I hope you can have some you time ,

    Fondest thoughts to you and your children xx

  • Thank you , I had respite in April.Oh it was bliss. It's amazing how we all cope from day to day. Some times I don't want to get out of bed and face another day. Not much choice. , Sending love , what an amazing site this is with all our faceless friends xxxx

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