My husband as yet (after over two years) hasn't had a diagnosis but I know something's not right I knew two years ago but no one listened they said deppression and discharged him to metal health services he was refferred back last July we have a feedback appointment on Tues from the clinical psychologist and diagnosis on Thur he had a UTI a couple of weeks ago ended up in hospital he was really bizarre coming out with strange things admittedly some of them were funny but he now seems to be worse!! I already have my mum with VD and my dad with AZ how am I going to cope.....he's only 62 I'm 58 our 23 year old son lives at home he looks after his dad while I'm at work we are lucky we do have a loving family and friends but when you close that door in the evening!! I'm so scared I seem to be on a rollercoaster waves of anxiety come over me then the tears while all the time trying to be brave and strong for my husband any word of wisdom please!!
Waiting for husband's diagnosis so scared
- Thread starter Debmar
- Start date
Hi Debmar
Like many folk on this forum, I guess, I can empathise with your experiences so far. I care for my wife who was diagnosed just over 4 years ago, although it had taken a couple of years of worry, concern and anguish to get to that stage (we are both 67 now).
I found that what made things worse, was the fact that we had watched her mum's partner go through a traumatic decline due to vascular dementia. They say "ignorance is bliss" and I certainly found that knowing what I was potentially going to have to deal with, made it initially harder to cope with? I found myself switching over channels, if anything to do with dementia came on the TV and generally tried burying my head in the sand.
However, my wife's aunt heard about a local dementia support monthly coffee morning, which we went to and the lovely folk there were very supportive and pointed me in the direction of some carer support organisations, who have been fantastic.
So as my wife has slowly "disappeared" into her own happy (thankfully) place, I have at least been able to arrange for a respite visitor who comes every Monday afternoon, 3 hours at a dementia "activity morning" each Tuesday and a Day centre every Wednesday.
That said, I can totally understand how you feel when the door closes - I do often feel very lonely, despite having two loving grown-up sons, family and friends who are all great. I think it seems worse at this time of year, when everyone else is talking about holiday plans, weekends away and days out etc.
I have taken what for me is a big step, and arranged for my wife to go for a week's respite care at the end of August. I have been invited to go to Majorca for a friend's 50th birthday celebration, which I am looking forward to, but with a lot of trepidation as to how my wife will be and what she will be like when returning home.
So I wish you well in your continuing "journey" and as for words of wisdom, take any help you can get.
Phil
Like many folk on this forum, I guess, I can empathise with your experiences so far. I care for my wife who was diagnosed just over 4 years ago, although it had taken a couple of years of worry, concern and anguish to get to that stage (we are both 67 now).
I found that what made things worse, was the fact that we had watched her mum's partner go through a traumatic decline due to vascular dementia. They say "ignorance is bliss" and I certainly found that knowing what I was potentially going to have to deal with, made it initially harder to cope with? I found myself switching over channels, if anything to do with dementia came on the TV and generally tried burying my head in the sand.
However, my wife's aunt heard about a local dementia support monthly coffee morning, which we went to and the lovely folk there were very supportive and pointed me in the direction of some carer support organisations, who have been fantastic.
So as my wife has slowly "disappeared" into her own happy (thankfully) place, I have at least been able to arrange for a respite visitor who comes every Monday afternoon, 3 hours at a dementia "activity morning" each Tuesday and a Day centre every Wednesday.
That said, I can totally understand how you feel when the door closes - I do often feel very lonely, despite having two loving grown-up sons, family and friends who are all great. I think it seems worse at this time of year, when everyone else is talking about holiday plans, weekends away and days out etc.
I have taken what for me is a big step, and arranged for my wife to go for a week's respite care at the end of August. I have been invited to go to Majorca for a friend's 50th birthday celebration, which I am looking forward to, but with a lot of trepidation as to how my wife will be and what she will be like when returning home.
So I wish you well in your continuing "journey" and as for words of wisdom, take any help you can get.
Phil
Hello @Debmar
Even though you say you have been waiting two years for a diagnosis, I see you have been a member of Talking Point since 2011. If you have been worrying alone for seven years I`m not surprised you suffer waves of anxiety .
If it`s today you have your feedback appointment please ask for and accept as much help as is available for you.
Please post an update after your appointment if you can. You will be well supported here.
Even though you say you have been waiting two years for a diagnosis, I see you have been a member of Talking Point since 2011. If you have been worrying alone for seven years I`m not surprised you suffer waves of anxiety .
If it`s today you have your feedback appointment please ask for and accept as much help as is available for you.
Please post an update after your appointment if you can. You will be well supported here.
My mum's has vascular dementia since 2011 my dad was diagnosed with Alzheimer's last year my husband had prostate cancer now in remission so while I joined I never actually actively used this part!! Thanks for the reply it's a scary time at the min x
Oh now I understand. You have been living with dementia for years as I had when both parents had dementia and then my husband. Of course it`s a scary time , it can be nothing less.
Try to make use of the forum this time around, if your husband is diagnosed. You will be welll supported . Even though it`s only on line support you`ll be amazed how beneficial it can be.
Would your son go with his Dad to any of the dementia support groups? I remember several sons bringing their fathers to the football memories group and the bowling group. I know my husband enjoys the company of other men even though he's fine with women too. It would give you a break and these groups are a lot of fun too.
You have a lot on your hands. Good luck.
You have a lot on your hands. Good luck.
hi @Debmar
here's a link to the main AS site's directory of local services, just in case there's anything helpful listed
https://www.alzheimers.org.uk/info/20011/find_support_near_you?_ga=2.139333685.721471181.1503062667-213745934.1462100281#!/search
here's a link to the main AS site's directory of local services, just in case there's anything helpful listed
https://www.alzheimers.org.uk/info/20011/find_support_near_you?_ga=2.139333685.721471181.1503062667-213745934.1462100281#!/search
I'ts not something I've thought about but maybe need to get through this week then I'm sure I'll have lots of questions thank you for your reply. x
Thank you I'm sure I'll be asking lots of questions my mum platuded out and while she doesn't remember much she's quite happy within herself my dad is early stages and takes medication he seems fine they have a carer everyday who goes in to help my mum and I go round as often as I can!! xx
Hello @Debmar , Your post rang lots of bells with me, I am near your age, my OH is 8 years older than I. We have my 25 year old daughter living with us. Like you I have known something is wrong with my OH since 2015. We are still struggling and looking for a diagnosis. His EEG and Spect scan indicated problems, though he had a repeat MRI recently which, when compared to the one 3 years ago, showed no obvious changes. We both left feeling very frustrated. OH swore, he said himself "there's clearly something wrong...." . My prevously very high functioning husband, now has problems with thinking/planning/numbers/memory. Urgency & frequency. Sight problems and difficultly with words and communication, sleepiness, moodiness. Mishears us frequently, and says one thing when he means another. His writing is awful and it used to be beautiful... the list goes on...
Guess what I'm trying to say, is not to be frightened of a diagnosis. We were told that whatever the outcome of the scan, the 'treatment' would be the same (addressing his anxiety). We found that we'd rather have a label for it, and a reason for whatever is going on than not. We are discharged back to GP to wait for things to get worse , and meanwhile I feel that people would judge me for looking for help. I often cry with the frustration of it all. All we can do is our best, day to day, and diagnosis or not, that will not, unfortunately change.
