I am struggling to cope.
- Thread starter Hazeybaby
- Start date
Hello @Hazeybaby and welcome to Talking Point
I think we all tend to muddle through and get advice from others on here. What sort of problems are you having?
I think we all tend to muddle through and get advice from others on here. What sort of problems are you having?
Hi there and welcome to Talking Point.
I'm so sorry to hear you're having such a hard time. You've certainly come to the right place. There are lots of people here who have been where you are and will be willing to share their experiences.
You might find it helpful to contact the Helpline. The advisors there are very knowledgable and may be able to give you some advice. They're open until 8pm tonight, You'll find more details here-
Helpline
The phone number is 0300 222 11 22
Please keep posting.
I'm so sorry to hear you're having such a hard time. You've certainly come to the right place. There are lots of people here who have been where you are and will be willing to share their experiences.
You might find it helpful to contact the Helpline. The advisors there are very knowledgable and may be able to give you some advice. They're open until 8pm tonight, You'll find more details here-
Helpline
The phone number is 0300 222 11 22
Please keep posting.
When we first started this journey over 4 years ago, I felt lost, frightened, sad, angry, panicked... you name it, I felt it!
I couldn’t start to imagine how on earth I would cope with supporting my lovely wife (PWD).
Finding this forum is a great start (I didn’t stumble across it for s couple of years) so I would suggest you read and read and read as many posts as your brain can take.
In those early days, I found myself sticking my head in the sand - anything on the TV about dementia had me reaching for the remote.
As time progressed and I managed to find various support organisations, I was like the proverbial sponge, soaking up anything I thought would help.
The end result is that as each stage in my wife’s decline happens, I have found I am able to find some level of coping strategy (so far, anyway).
So if you feel like sharing more about your problems, this wonderful TP family will come to your aid.
Kindest regards.
Phil
I couldn’t start to imagine how on earth I would cope with supporting my lovely wife (PWD).
Finding this forum is a great start (I didn’t stumble across it for s couple of years) so I would suggest you read and read and read as many posts as your brain can take.
In those early days, I found myself sticking my head in the sand - anything on the TV about dementia had me reaching for the remote.
As time progressed and I managed to find various support organisations, I was like the proverbial sponge, soaking up anything I thought would help.
The end result is that as each stage in my wife’s decline happens, I have found I am able to find some level of coping strategy (so far, anyway).
So if you feel like sharing more about your problems, this wonderful TP family will come to your aid.
Kindest regards.
Phil
So many to list but the main thing is repeatedly telling him things he can’t remember and he is adamant I haven’t told him. He gets something fixed on his mind and unless I can diffuse it he will repeat it time and time again
I wondered if you would find this approach helpful -
https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/
https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/
Hi
I found out about this forum in the Prima mag. My husband was diagnosed with Alzheimer’s last October, and at first it was mainly memory, keys, appointments etc, but now it stretches to anxiety, and almost hyperventilating when he loses something or is out of his comfort zone. He lost his HGV license which her finds hard, although he is retired he has no hobbies apart from walking our two dogs. I found a book called “contented Dementia” which was helpful. The main tip being, do not ask questions of them, as they find it hard because they cannot remember and get distressed. I do not know what stage happens next, and take it literally a day at a time.
I found out about this forum in the Prima mag. My husband was diagnosed with Alzheimer’s last October, and at first it was mainly memory, keys, appointments etc, but now it stretches to anxiety, and almost hyperventilating when he loses something or is out of his comfort zone. He lost his HGV license which her finds hard, although he is retired he has no hobbies apart from walking our two dogs. I found a book called “contented Dementia” which was helpful. The main tip being, do not ask questions of them, as they find it hard because they cannot remember and get distressed. I do not know what stage happens next, and take it literally a day at a time.
Welcome to TP.
You may find this thread useful
https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/
BTW @Thethirdmrsc, don't be afraid to start your own thread if you wish to ask a specific question or just vent feelings. The membership are a friendly, informative and supportive group and I'm sure you will get replies.
Hi I think we all struggle at times, I am having a particularly bad week too. It’s hard, try to make some time for yourself if possible. I know that’s not easy I can’t leave my other half alone so apart from when he goes to day centre twice a week we are together 24/7. Do you have any help? Or does he go to daycare? I’ve read as much as I can on the illness, but it is hard to understand how their brains are working sometimes. Hang in there. Xxx
I am beginning to wonder if I have had the last sensible conversation with my OH. He seems to understand the conversation and be able to make comments about decisions but then it becomes clear that he doesn’t really know what he is saying. So it is now very much ‘in the moment’, there is no point in trying to engage in abstract conversation about anything except concrete things such as the weather, a view or the family. It’s very isolating to lose your partner of over 50 years and something I never expected. No one does.
I know exactly what you mean, my husbands speech was the first thing affected by this dreadful disease about 5-6 yrs ago, and I miss having a conversation with him so much, and just the little things like “what do you think of this” and you can’t get an answer. It’s such a lonely life! Xxx
I completely understand how you feel. It is the most desolate place to be. A couple of nights ago I downloaded the book recommended on here called 'loving Someone who has Dementia' by Professor Boss. I stayed awake reading it until the early hours. I found it be very reassuring. It so accurately describes the difficulties of our situation and made me feel better about the feelings and frustrations I experience. My husband sounds pretty much the same as your partner, he really cannot hold a meaningful conversation. We now only talk about the birds on the bird table, the weather or the dog. It is, as you say very isolating. In addition to this I have to be careful not to mention certain things, as they either get him worried or annoyed. We used to talk, talk, talk about everything and everyone. I found him so fascinating and engaging. Now all that is gone, replaced by emptiness, (although I am not sure that makes sense, as I don't think you can replace something with nothing.) With regard to alcohol, my husband drinks way to much and has done for years. I have tried to get him to cut down as it is so bad for him and he is worse when he had had a few drinks. However, part of me thinks it is too late and too hard to do anything about. I hope you can get some comfort from the shared experience of people whose partners have Dementia. I have never participated in an online forum before, but I am finding this forum to be very helpful and comforting, I hope you do as well, we can't do much to change our situation, but we can offer support and understanding. If you have not read the book by Prof Boss I thoroughly recommend it.
@Violetrose the only way to get through this is to support and comfort each other. I handled the situation badly tonight because I had had a good evening with what seemed like normal conversation and now I realise how sick he really is and deteriorating fast. I treated him as if he was normal and he is not. He won’t remember and I realise now that I have to treat him as sick. I have become dictatorial because that seems to be the only way to function. He can do quite a lot still independently in the mornings especially if I direct him and so I shall carry on.
Likewise. I seem to be upset with OH more when I've been around normal people and then come home to him, expecting him to be normal too. I call it "Re-entry." Re-entry into my new, lonely world that no one understands unless they are living it. My OH seems to be deteriorating quickly right now too. I believe they have a scale for Alzheimer's, but I would like to see one for Dementia. I'd like to explain that he is stage 2 and what can I expect in stage 3. Where's a scientist when you need one? I guess they're all too different depending on what part of the brain is affected. My husband's is in the front and the doctor used the term executive function frequently. I do notice that I'm mostly having small talk with him. And that, is exhausting.
Hang in there. You are not only helping out your loved ones, you are helping me. Thank you all.
The short answer is ‘with difficulty’. I only cope now through the words of support and comfort on TP. That is often the only support available to people who can’t leave their partner for long, when attending the meetings that are held locally is not an option for some reason. The forums are always there twenty four hours a day and always someone there to read and reply if needed. It relieves the feelings and believe me I boil over at times, though a lot less than I used to do. Logging on and reading and posting is a great safety valve.
Yes I find I am checking in to TP more and more, it’s a bit like a safety valve. When you’re having a bad moment just check in, it’s somehow reassuring knowing there are others out there who understand, although it would be preferable if not so many people were going through this. Xx
I’ve been in this world for about 5 years - but only 2 yrs since diagnosis for my Mum. I’ve only just posted on TP
but have been reading it for ages - and it’s FABULOUS. My experience is that this forum teaches you stacks, I also read contented dementia, and I learnt 2 other things. 1) treat every moment/comment/ question as though it’s the first time it’s hapoened - be genuinely surprised/interested when you are In those torturous repeated moments with your pwd - it drives you mad - but makes your pwd happy and that is good for everyone. 2) I also pretend I’m as bad or forgetful as them and take the blame for everything - which my mum finds hilarious - because as she says ‘you’re all acting very strange - I think you’ve all gone mad’!! Finally - none of us do it - but you MUST find your own time and not loose yourself in dementia. We’re all here xxx
but have been reading it for ages - and it’s FABULOUS. My experience is that this forum teaches you stacks, I also read contented dementia, and I learnt 2 other things. 1) treat every moment/comment/ question as though it’s the first time it’s hapoened - be genuinely surprised/interested when you are In those torturous repeated moments with your pwd - it drives you mad - but makes your pwd happy and that is good for everyone. 2) I also pretend I’m as bad or forgetful as them and take the blame for everything - which my mum finds hilarious - because as she says ‘you’re all acting very strange - I think you’ve all gone mad’!! Finally - none of us do it - but you MUST find your own time and not loose yourself in dementia. We’re all here xxx
