1. Jacquis

    Jacquis New member

    Jan 7, 2019
    3
    My husband was diagnosed over a year ago with Alzheimers, although I know he has been struggling for about 3 years previously, I am really struggling, he has completely changed from the person he was, everything that was good about him has gone. He now sits on the sofa from 7.30am until 9.00pm reading the same book, he hardly talks to me, he doesn't make himself a drink or anything to eat, he just sits and waits for everything, he doesn't know even how to turn the TV on. He will not accept that he has anything wrong with him and so he won't go to any groups or have anyone in, there is just me and him. I get out in total for 8 hours a week, the rest of the time I am in the house. I have to shave him, prepare the shower, encourage him to wash, change his clothes and last week I had to start cleaning his teeth. We never go anywhere, he won't even entertain the idea of eating out. Now he has started getting up through the night and walking around turning every light on in the house and waking me up. The only time he appears to talk to me is about going to the toilet, anxious about getting up in the morning, and he is crying a lot. I spent 3 hours at the emergency Dr on Sunday at our local hospital, because he said he had something wrong with his stomach, after waiting, when we got in there he said he was fine and the pain had gone. Sorry people, Im really struggling to adjust from being a wife and friend to a carer, and just needed to vent my feelings. If anyone has any suggestions about what I can do Id be grateful.
     
  2. canary

    canary Registered User

    Feb 25, 2014
    10,712
    Female
    South coast
    Hello @Jacquis and welcome to DTP.
    There are many of us here who are living your life. They are forgetting how to do everything, but they dont realise and think they still can. Their lives are reducing and narrowing so that they are in their own little bubble where all they can see is their own wants, needs and comforts.

    If you wait for them to agree to help, you will wait forever. There comes a time when you have to stop enabling their wants and start implementing their needs. I have a similar problem with my OH - he spends all day in the conservatory on his android tablet. I have a recurring problem with a disc in my back and a couple of weeks ago it became very painful. It brought it home to me that if something happened he wouldnt have a clue what to do and also, without me he would have to go into a care home. After he has had a spell in hospital because he had a UTI and kept falling, I have decided that the carers are continuing.
     
  3. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,700
    you need to speak with his GP & raise these concerns, medication can help.
     
  4. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,356
    Female
    South of the Border
    Be kind to yourself - really - it has taken me 3 years to get used to the idea living with my OH who is changed just like yours. ( and I still have not properly accepted it)
    Mentally, it is a HUGE challenge for us carers to adjust the way we think about our former partners/lovers/ soulmates as they become less than a shadow....
    Be kind - think of yourself and do something that pleases you.
    I often go 'house hunting' around the country on zoopla - just imagining what can never be - but it is good to imagine - find something that you can 'escape' to in your mind, while the relentlessness of caring continues.....
     
  5. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,077
    Yorkshire
    hello @Jacquis
    a warm welcome to posting on DTP

    canary has an important point, it may be wise to get some support in place soon to take some of the strain from you, despite your husband wanting to keep things to just the 2 of you, especially as your nights are now being broken so you're not resting.... though I appreciate it won't be easy if he chooses not to co-operate
    might you start with a cleaner and then slowly increase what is done

    do arrange an assessment of care needs for your husband with your Local Authority Adult Services, and a carer's assessment for you ... a care package will be suggested and even if your husband doesn't accept help, he will be 'in the system' and you can request a re-assessment at any time
    you may have to get firm and say support will be coming in to help you (rather than him, if this gets his back up) and even make up a reason eg your GP says you have tweaked an old injury somehow and must rest

    and given how much care you are now providing, do look into Attendance Allowance if you haven't already
    https://www.gov.uk/attendance-allowance
     
  6. Sunshine2*

    Sunshine2* Registered User

    May 16, 2019
    15
    Hello Jacquis, May I say what a wonderful job you are doing caring for your husband. As others have said I would certainly speak to his GP and also your local authority to see if there are places he can go for a few hours a week (music therapy is good and conversation with other people too). I would also try to get him in for respite care for a few days, so you can catch up on your sleep and trips out. My husband has been ill for 30 years and has had Aplastic Anaemia, a brain haemorrhage, has epilepsy, has Multiple Sclerosis and MS Dementia. He is disabled and has Optic Neuritis and Nystagmus. I am a 24/7 carer and I now have Osteoarthritis, Carpal Tunnel Syndrome and Cervical Spondylosis, so pushing him in his manual wheelchair is getting harder for me. Keep positive. It’s the only way. Best wishes.
     
  7. Jacquis

    Jacquis New member

    Jan 7, 2019
    3
    Oh my goodness, thank you all so much for your helpful comments, I never expected such a response. I have been putting off posting anything, but in desperation I let my thoughts out. And I am so grateful to you all. I will re-read your posts and take your experienced advice on board.
     
  8. Vic10

    Vic10 Registered User

    Feb 18, 2017
    70
    Oh, never put off posting. I have found so much help and suppport on this forum. It has got me through many changing stages of this wicked disease.
    Many of us are living in this strange lonely world that having a partner with dementia creates and like you I find one of the biggest challenges is the denial. I’m sure life would be easier if I was ‘allowed’ to help!
    Regarding going out for a meal, something we have always enjoyed, I’m still managing the occasional lunch (somewhere OH knows and has been before) or maybe just coffee and cake. As for a meal I know it’s not the same but treat yourself to a takeaway occasionally!
     
  9. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,439
    East of England
    @Jacquis I too have been treading this path for the past couple of years after a sudden onset of Alzheimer’s disease and it’s a lonely, rough old road. Sometimes I wonder how I keep going and without TP I am not sure that I could have without breaking, in anger if not in health. My anger at the stupidities of this disease is kept more in check now and I have learned how to function without breaking myself up too much. I hate this life but at the moment I have no escape, being between the rock of having him here and the hard place of being without him entirely. Small pleasures are my relief.
     
  10. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,700
    Take care
    X
     
  11. White Rose

    White Rose Registered User

    Nov 4, 2018
    93
    So sorry to hear you are having such a terrible time, it's hell really isn't it. What I've found helps is getting my partner out into the sunshine (when there is any), we try to have a walk everyday and I get him out weeding in the garden if it's not raining - all this helps his sleeping and his mood I'm sure. I still try all sorts of foods, broccoli, tumeric and coconut oil are supposed to help, no alcohol and no caffeine, plenty of water. A snack such as toast just before bed seems to help him wake in a better mood. Your husband might have depression if he's aware of his Alzheimer's but doesn't want to accept, crying is part of it. My partner likes to go out all the time and waits for me to find things for him to do as he's always bored since he stopped being able to read. It's a cruel disease for them and a miserable deal for us carers. Try to get some help in - he might not like it at first but professionals know how to deal with them - you're really going to need regular breaks, not always easy to organise I know.
     
  12. Rosserk

    Rosserk Registered User

    Jul 9, 2019
    318
    Omg what an excellent mantra I love it! ‘stop enabling their wants and start implementing their needs.’ Why didn’t I think of that! X
     
  13. Sunshine2*

    Sunshine2* Registered User

    May 16, 2019
    15
    Having another difficult night. After 10pm my husband decided he was going out and started to put his coat and shoes on, shouting that he’s had enough! So, there he was trying the door, luckily he doesn’t have access to his keys and wouldn’t be able to open it anyway. I stayed silent for a while and then managed to convince him it was time for me to wash him and change his indwelling catheter leg-bag. Who would I actually call if he continued to pull on the door and wouldn’t come away from it? Any advice would be greatly appreciated. His angry outbursts are tiring me out and his legs are giving way in the house despite a Zimmer frame.
     
  14. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,077
    Yorkshire
    hi @Sunshine2*
    you did well to redirect your husband ... I definitely found with dad that not engaging, staying out of the way and quiet was the way to give him a chance to work away the energy and slowly settle, though on occasion that seemed to take forever, and he could get really wound up
    at night is when we feel most alone with such situations
    I know others have actually put on a coat and walked/driven round the block
    if some time he really does not settle, I guess call 111 to talk to out of hours medics
     
  15. Banabarama

    Banabarama Registered User

    Dec 28, 2018
    40
    Female
    Sussex
    I’m not surprised you are struggling with your new role. It’s a living hell. I can relate to your situation and know what’s its liked when the conversation revolves around toileting and little else (at least, in my case, little else that makes any sense). You are clearly doing an amazing job. But as others have said, you must get some help and respite for yourself to do things for you. This place is full of amazing people who are very helpful. No one understands this issue unless they are going through it or have been through it themselves. Why should they? That’s taken me quite a while to accept. And sometimes even now being told that someone knows exactly how you feel on the basis that they occasionally visit mother in Law who has dementia still annoys me.
    Take care.
     
  16. Sunshine2*

    Sunshine2* Registered User

    May 16, 2019
    15
     
  17. Sunshine2*

    Sunshine2* Registered User

    May 16, 2019
    15
    Hello Shedrech, Many thanks for your help. He’s still asleep this morning. He won’t even remember what happened last night... I could honestly write a book about everything that’s happened over the last thirty years with his many illnesses. Thank you.
     
  18. Gladys1946

    Gladys1946 Registered User

    Feb 17, 2019
    25
    I can relate to all of you. Mine sleeps a lot now, constantly grunting, insists there's nothing wrong with him and is so awkward. I take him to a day centre one day a week. It's a struggle to get him there, he gets angry saying he doesn't want to go and last week he just stomped off when I got him there. One of the carers chased after him and of course he was all sweetness and light with her. I absolutely hate this disease. Yet some days I wonder if I imagine he has it (when he's having a good day) and then I feel guilty. It's rough out there and unless you are living with it no-one can possibly understand what it's like.
     
  19. Sunshine2*

    Sunshine2* Registered User

    May 16, 2019
    15
     
  20. Sunshine2*

    Sunshine2* Registered User

    May 16, 2019
    15
    I agree with your comments... I take my husband somewhere for a few hours, once a week and it is a wonderful place, lunch, conversation, music therapy, arts & crafts etc. He thinks I’m taking him there to get rid of him! Whilst he’s there and he’s well looked after, I can food shop without worrying about him or do some gardening. At times, he’s tried to open the car door, whilst I’m driving him there (the door is locked)! Once there, he’s all smiles and happy to speak with the staff! I know taking him here is good for the both of us. It is so good to speak with people on here...
     

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