Hi I am new to talking ,my oh was diagnosed with dementia 2 and half years ago but I think he had it quite awhile before he was diagnosed,just wanted to know really if anyone has the same problem as me with talking my oh doesn't talk much to me now and when he does want to tell me or ask something he forgets the words and I try to help him find the words to use its so flustrating for both of us and then after all the guessing he just can't be bothered and says it doesn't matter some times I really don't know how to help ,I do such a lot now and I get really upset and sad and think why us ,I think I feel I really want to talk to someone that's going through the same as me ,I know I'm not the only one ,I feel sad life has changed so much .
I am new to talking point
- Thread starter Martarita
- Start date
Dementia is awful for the sufferer and mentally and physically draining for the carer. You will think you have nothing left but the next day starts again and you are still alive. Persistence is needed when dealing with health and social work but a bit of mild bribery (coffee and scones) when they visit works wonders
Welcome to TP Martarita. You will find loads of support here and people who are also dealing with the same problems you are. I found reading others posts when I first joined taught me so much and prepared me for what was to come. My OH has only recently started to struggle with his speech but so far I have been able to fill in the gaps to understand him. I’m sure others will be along shortly to help.
Hello and welcome from me too @Martarita.
I wonder if you may find any local support services like a memory café to be of some use. You can do a post code check to see what's available to you by following this link https://www.alzheimers.org.uk/find-support-near-you
The full list of the very informative Factsheets can be found with this link https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list
If communicating becomes an issue, a few handy tips can be picked from the useful thread that can be reached with this link
https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/
There is also a specific Factsheet that may be useful and that can be read if you click the PDF line of the following link
Communicating (500)
PDF printable version
I wonder if you may find any local support services like a memory café to be of some use. You can do a post code check to see what's available to you by following this link https://www.alzheimers.org.uk/find-support-near-you
The full list of the very informative Factsheets can be found with this link https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list
If communicating becomes an issue, a few handy tips can be picked from the useful thread that can be reached with this link
https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/
There is also a specific Factsheet that may be useful and that can be read if you click the PDF line of the following link
Communicating (500)
PDF printable version
Last edited:
Welcome to TP, Martarita. Pete has beaten me to it with his practical suggestions, so I will just add I know how you feel and all you can do is be patient and as calmly supportive as humanly possible with a few hugs and reassurance when your OH gets frustrated. That is the best I can offer, sorry.
@Martarita , think you’ll find TP so so useful as I do. I’ve found with Alzheimer’s there is no “ 1 size fts all” , and I find the hints helpful, especially when you question yourself if you’re doing things right as there’s no answer to that! Hugs. X
Hi @Martarita and welcome to Talking Point.
My husband's speech also became affected as the dementia progressed. There was nothing I could do to stop it, but a few strategies did help keep him communicating to some extent - even if it was limited to responses of one of two words towards the end.
I found that the atmosphere was key to most communication. In the earlier stages my husband was happy to have a group of people around him. He enjoyed their chat but we developed key rules in that only one person would talk at a time and we would leave time for my husband to find the words (sometimes with a little help from me, but not to the point of finishing off everything he was trying to say).
As things progressed I found that the best way to communicate with my husband was to have as little background noise as possible. I don't mean that we sat in total silence, we enjoyed tv or background music etc, but if my husband was trying to say something I would turn the background sound off, which helped him gather his thoughts.
Again, as things progressed, I had to adapt the way I spoke to him. Short sentences were more likely to get a response than longer ones, which he found harder to hold on to.
One of the other things I noticed as things progressed was that my husband seldom initiated a conversation - but he was happy to try and respond to comments I or others made, given the time and space to do so.
Eventually communication came down to a handful of words - but even these had great meaning when accompanied by one of his lovely smiles, a worried look of simply the holding of hands.
It is difficult to lose the to and fro of general conversation and I did miss the chatter and banter I'd previously enjoyed with my husband - but I was glad to have some kind of communication going for as long as we did.
Hi Margarita. My wife was diagnosed with Alzheimer’s in late August this year. Her memory had been going for a few years and I retired early in late 2015 to spend more time with her. We were trying to get a diagnosis for nearly four years! The last year she has gotten much worse. We no longer have intellectual conversations and like you noticed, she also cannot always find the right words. We laugh at what she says, but it really gets me down not having anyone to talk to. I feel soo guilty when I escape for a few hours and talk to people without cognitive impairment I almost get a high and feel so much better after talking to someone....anyone! I then have deep guilt when I get home and know I have to deal with trying to converse meaningfully with my wife. I love her so dearly, but struggle with watching her slowly slip away from me. I definitely need help in coping with my full time caring for my wife. I am with you and know how you feel x
I think most of us living with partners with dementia feel the rush of pleasure when having a normal conversation with a person with no impairment, perhaps tinged with guilt and, in my case, supreme sadness. I don’t think we should feel guilty though because it’s not something we chose to have, a partner with dementia. I felt quite strange when this happened on holiday almost as if I was in another country, which in a sense I suppose I was. My conversations with my husband are totally out of whack, it’s hard to describe and is an Alice through the Looking Glass world, but I am sure people here will know what I mean.
I know exactly how you feel although that’s always a tricky thing to say because we all feel things differently. But the description you give is so similar to mine and there are many similar posts on Talking Point that we can talk to each other about our difficulties. We can’t change things but we can help with hints and tips, I know that I have had to change my attitude a lot to cope and still have meltdowns every now and then.
Thank you for your replies it's very kind for you to take time out to reply, it seems to be a guessing game most of the time and yes we do have a laugh about somethings,but my OH doesn't seem to listen or actually hear me when I try to talk and help him yes it's really very sad and upsetting,when you think how things use to be ,we have good days and not so good ,today had a good morning but this afternoon for a couple of hours we've been looking for something that my OH couldn't remember what we were looking for ,so the guessing game begins looking in drawers,cupboards,jugs, boxers,finally I guessed right it was the shed keys of course ,which we didn't need and didn't find ,lets see what tomorrow brings,thank you once again.
I’m also new to the whole Alzheimer’s diagnosis and to forums like this. My husband has recently been diagnosed and whilst we are still lucky that he recognises people and places he struggles to have a proper conversation. I am working full time, can’t afford to give up (and selfishly don’t want to) but struggling to balance all the balls in the air so to speak. I’m not the kind of person to reach out for help but am feeling a little overwhelmed at the moment. Feeling life is unfair and what have we done to deserve this (my husband is 60 and i’m 46). Your posts and experiences are comforting to know we’re not alone but feeling a little lost right now.
hello @Sam T
a warm welcome to TP
I'm glad that you are finding some comfort in reading round the forum and seeing that members share many of the experiences that having dementia in our lives brings
I agree it all is so unfair and no-one deserves to find themselves in such a situation, at least we can support each other here
so now you've found us, do start your own thread when you're ready and folk will offer ideas and sympathy
a warm welcome to TP
I'm glad that you are finding some comfort in reading round the forum and seeing that members share many of the experiences that having dementia in our lives brings
I agree it all is so unfair and no-one deserves to find themselves in such a situation, at least we can support each other here
so now you've found us, do start your own thread when you're ready and folk will offer ideas and sympathy
Hi sam T my OH was diagnosed 2 and a half years ago but had it quite a while before his diagnosis,I know exactly what you mean ,it is overwhelming and for me really hard to come to terms with but we have good days and bad days ,please don't think you're on your own there's always someone at talking point that will understand.Take care and I'm really sorry you're going through this bad patch,here's a BIG HUG for you
Thank you for your reply and supportive words. I was having a particularly bad day when I posted to the forum. Not much support in my local area outside of full time working hours and what I can find comes with a price tag. Had a better few days since and we are both a little more relaxed at the moment. Today is a good day- hope for tomorrow xx
Hi Sam T I'm so glad you've had a better few days , good days bad days that's how it goes ,we just take each day as it comes ,my morning wasn't so good today I and I can't tell my OH as he wouldn't understand and he wouldn't know why I felt that way he thinks I'm happy all the time which I do try to keep his spirits up I was feeling really sad and upset and felt like crying but crying doesn't help matters ,my OH doesn't notice when I'm feeling down anymore but that's how it is . It was one of those mornings maybe I was feeling a little sorry for myself ,but it didn't last too long it's not all doom and gloom we do have laughs . And now I've joined TP I can at least vent my feelings good or bad and everyone understands how your feeling.Take care let's hope we have more good days X
@SamT
Hi Sam, I encourage you to work as long as your husband can manage on his own. I was 48 and my husband 49 at the beginning of our Alzheimers journey. I am so grateful he was able to hold his own somewhat until I was 59.5. As I had two kids and two step kids to help finish studying. And I had to earn to keep us afloat.
But as your husband is so much older than you, you will perhaps need to monitor your individual situation. Each Alzheimer's patient has a different progression in the disease. There are some clear indicators and signs which are helpful....but my biggest advice is be prepared. Find outside carers (or volunteers if possible) and start introducing them as soon as possible into your environment. I started out with hiring a young man to walk 3.5 hours two times each week. My hubby at first was not pleased but now he considers this man (whose name he can never remember, his friend). Being one step ahead of what is currently happening and planning for the worst has been my solution.
And of course, making sure all your paperwork POA, wills, life insurance, and major medical decisons have been made, written out and signed, and given to others of importance in his life. (ie lawyer, doctor, hospital where he is treated)
Being prepared to the inevitable has helped me in my journey.
