Waiting for a diognosis

Frances25

Registered User
Feb 28, 2024
10
0
Hi , I am new here . My husband has had various tests including memory assessment. We go back to the memory clinic next week for a diognosis - or not!! I know things are not as they should be and this has been going on for two possibly three years.
Having worked on a voluntary basis for the Alzheimer's Society ( many years ) I now feel to be on the other side of the fence! So many ' incidents ' misunderstandings and lost items . I worry that if he doesn't get a diognosis I will not know what my next move should be.
 

Violet Jane

Registered User
Aug 23, 2021
2,146
0
How did your husband do in the memory assessment?

I would take a list of problems and worrying behaviours, preferably listed in bullet points, to the appointment and hand it over, before you go into the appointment if possible. This information should be considered alongside cognitive tests and any scans.
 

Fabian

Registered User
Jan 22, 2024
97
0
Thank you for this suggestion Violet Jane. We are awaiting a memory clinic appointment so I’ll follow his advice when our time comes.
 

Frances25

Registered User
Feb 28, 2024
10
0
Thankyou Violet. The memory test was done at home that was followed up by an appointment at the memory clinic where some in depth questioning took place. I asked about the score and was given a few . One of which was 10 out of 26 we were told " there are deficiencies" Memory nurse said she would be meeting with a doctor to discuss the what the next move would be - diognosis? and if medication would be beneficial. We go next Tuesday for the results. Your idea of handing in a list of problems prior to appointment is a sound one . I did take a list to our last appointment but it was a very difficult situation with my husband sitting beside me. She did ask me to explain what had been happening - I bit the bullet and was honest with her and mentioned a few incidents. I made it very clear that I thought my husband had a problem. Fortunately my husband engaged with the process very well. I am hoping we get a diognosis it would explain a lot !!
 

Watson1

Registered User
Sep 4, 2023
89
0
I went to the memory clinic last aug. i new i was having some problems. yes you have alzheimers and this is what the road ahead may be like. some meds, reading books by people with alz. memory cafes, zoom groups, painting,alz.society forums i need to know this is my new world now and a lot of others are traveling the same road. i was thinking the other day that people from australia call them selves aussies than maybe we should refer to our selves as a alzzies has nice ring to it i think..........
 

Frances25

Registered User
Feb 28, 2024
10
0
We now have a diognosis. I am relieved .
My husband now on medication. Early days but it is already stressful and I fear for the future.
I can cope with his memory loss, losing things, forgetting appointment dates etc. What I am struggling with his increasing unreasonable behaviour. His latest issue is me watching a drama / soap on TV. Half way through he insists on me switching channels so he can watch the news ! ( He has the news on most of the day at full blast - noise pollution!) It drives me mad but I put up with it. I do object to his demand to switch channels when I am in the middle of a programme. We have two more TVs in different rooms, but he refuses to use them and objects if I leave the room . His judgement of situations is poor and he gets things wrong most of the time. I know I shouldn't be resentful and angry with him but I am !! Shouldn't rise to the bait
but I do! This causes me to feel I am going to explode because of his inability to be rational - feel I don't know him anymore. I don't discuss the full implications with my adult children, they have their own jobs and children to worry about. I could go on and on with all the stuff that is going wrong. I am already losing the man I married 50 years ago. I do take myself out to see friends and I swim so not socially isolated, I have friends who are supportive, but this situation is breaking my heart.
 

Izzy

Volunteer Moderator
Aug 31, 2003
75,867
0
73
Dundee
I’m glad you now have the diagnosis @Frances25. I’m sorry though that things are so difficult for you.

It really is heartbreaking and I hope that you will find the support here helps a little. It might also be a good idea to contact the Admiral Nurse helpline -

 

Frances25

Registered User
Feb 28, 2024
10
0
Thankyou Izzy for your speedy response and your advice. Alzheimer's is so complex Is' nt it? I love my husband so much and I am cross with myself for feeling so frustrated with him . We took care of my Mum when she became confused, that was hard but I had my husband beside me and I knew that when she died I would be devastated but that my life would pick up and continue in the same way. This is a different ball game altogether! I am losing my reliable man . At times he seems ' ok' then he says or does something that confirms his diognosis. Thank you for reading, feeling sorry for myself today, but I know it will pass - it usually does!
 

jennifer1967

Registered User
Mar 15, 2020
25,681
0
Southampton
Thankyou Izzy for your speedy response and your advice. Alzheimer's is so complex Is' nt it? I love my husband so much and I am cross with myself for feeling so frustrated with him . We took care of my Mum when she became confused, that was hard but I had my husband beside me and I knew that when she died I would be devastated but that my life would pick up and continue in the same way. This is a different ball game altogether! I am losing my reliable man . At times he seems ' ok' then he says or does something that confirms his diognosis. Thank you for reading, feeling sorry for myself today, but I know it will pass - it usually does!
stop being cross with yourself, you are grieving for the man you married and for the uncertain future that the diagnosis gives you. you are probably angry at him for getting it in the first place. just take a day at a time and leave go of the pressure you seem to be putting yourself under. its good that you can go out on your own.
 

SherwoodSue

Registered User
Jun 18, 2022
777
0
Frances25

This is the hardest bit in many ways , you would have been at a loss to explain what was going on if there was no diagnosis but getting the diagnosis hits you like a brick.

Practically, if you haven’t already done so do start the ball rolling with power of attorney, will be easier if your husband still has capacity and agrees.

Do also apply for Attendance allowance. Fill in the form as though you were describing your worst possible day. X can do this but with support/supervision etc …..

There is also help with Council Tax

As soon as possible get your husband used to having someone stay with him so you can get some breaks. The TV remote wars alone suggest you will need them.

Welcome to the club no one wants to be in but there is support here.
 

ValP

New member
Aug 27, 2023
9
0
We now have a diognosis. I am relieved .
My husband now on medication. Early days but it is already stressful and I fear for the future.
I can cope with his memory loss, losing things, forgetting appointment dates etc. What I am struggling with his increasing unreasonable behaviour. His latest issue is me watching a drama / soap on TV. Half way through he insists on me switching channels so he can watch the news ! ( He has the news on most of the day at full blast - noise pollution!) It drives me mad but I put up with it. I do object to his demand to switch channels when I am in the middle of a programme. We have two more TVs in different rooms, but he refuses to use them and objects if I leave the room . His judgement of situations is poor and he gets things wrong most of the time. I know I shouldn't be resentful and angry with him but I am !! Shouldn't rise to the bait
but I do! This causes me to feel I am going to explode because of his inability to be rational - feel I don't know him anymore. I don't discuss the full implications with my adult children, they have their own jobs and children to worry about. I could go on and on with all the stuff that is going wrong. I am already losing the man I married 50 years ago. I do take myself out to see friends and I swim so not socially isolated, I have friends who are supportive, but this situation is breaking my heart.
I understand completely my husband is just the same 😞. It’s so hard when he is completely in denial that he doesn’t have Dementia ( vascular) & won’t entertain the memory nurse or consultant!! He’s just so not the man he was - so cross & depressed all the time. Everything has to be on his terms all the time, it’s so hard living with it so I do know where you’re coming from.
You take care now & try & get time for yourself as much as you can, it’s not being selfish you have to look after yourself before you can look after hubby. 🤗🤗
All the best, Val
 

Carmenjane

Registered User
Mar 17, 2022
476
0
You've had some excellent advice already, but I'll add my bit. My OH is in a care home now, but when he was with me I got so frustrated and annoyed with him, I feel bad about it now. My advice about the TV situation is to just get up and go into another room to watch your programme, saying "you have been watching the news all day. Now it's my turn to choose". Much better than getting cross with him and raising your blood pressure and nothing to feel guilty about.
 

Kevinl

Registered User
Aug 24, 2013
7,448
0
Salford
Never apologise to us lot on here when you're having a bad day, we've all been there at some point. K
 

Frances25

Registered User
Feb 28, 2024
10
0
Thankyou you all for your concern and advice. Sherwood Sue I do have POA , I managed to get that sorted when I could see what was happening. I was also advised to apply for AA and that has been successful - so it's not all bad! I know zi am not alone - thankyou.
 

Dunroamin

Registered User
May 5, 2019
509
0
UK
@Frances25 Sorry to hear your news. I note you say you cannot discuss the full implications with your family, but please do not keep secrets (the truth) from them . It will come back to haunt you, and also diminish any care and support they may be able to give. Do not underestimate them.
 

Frances25

Registered User
Feb 28, 2024
10
0
Thankyou Dunroaming, I appreciate your response. Our three children are aware of their fathers diognosis, I have told them . The issue is my husband does not want anyone to know about his Alzheimers. This makes it difficult for me ! I have also told my siblings. This makes me feel guilty but I felt they should all know . Don't think our children were surprised - they all live fairly close so see their father quite often and of course could see the signs. My husband has periods of being unreasonable, when this happens I simply remove myself from the situation. At other times he is back to who he is. This is early days and I fear for the future. Today is our 50th wedding anniversary so we will be celebrating with family, so looking forward to that.
 

Bevhar

Registered User
Mar 23, 2023
298
0
Thankyou Izzy for your speedy response and your advice. Alzheimer's is so complex Is' nt it? I love my husband so much and I am cross with myself for feeling so frustrated with him . We took care of my Mum when she became confused, that was hard but I had my husband beside me and I knew that when she died I would be devastated but that my life would pick up and continue in the same way. This is a different ball game altogether! I am losing my reliable man . At times he seems ' ok' then he says or does something that confirms his diognosis. Thank you for reading, feeling sorry for myself today, but I know it will pass - it usually does!
My husband was diagnosed with Alzheimers in March following a diagnosis of MCI last August i am lucky as most of the time my husband is wonderful but it’s hard losing your rock I recently had a bad fall & broke my hand & cracked my ribs I have been very grumpy & feel ashamed of myself as I know if things were reversed he would be wonderful A couple of months ago he had to spend time in hospital & I prayed he would be ok & would rather have him muddled & forgetful than not with me He’s the love of my life & i
have to remember this I’m sure it must be tough when your husband is being a bit difficult Don’t beat yourself up it’s so hard but you sound a positive person & im sure you will cope I have found the Alzaheimers groups so beneficial & the Admiral nurses
 

Dunroamin

Registered User
May 5, 2019
509
0
UK
Thankyou Dunroaming, I appreciate your response. Our three children are aware of their fathers diognosis, I have told them . The issue is my husband does not want anyone to know about his Alzheimers. This makes it difficult for me ! I have also told my siblings. This makes me feel guilty but I felt they should all know . Don't think our children were surprised - they all live fairly close so see their father quite often and of course could see the signs. My husband has periods of being unreasonable, when this happens I simply remove myself from the situation. At other times he is back to who he is. This is early days and I fear for the future. Today is our 50th wedding anniversary so we will be celebrating with family, so looking forward to that.
I wish you well. i have alzheimer's and everyone knows. It is what I need as opposed to what I want that matters. If people do not know, they cannot help (and increasingly make allowances!!!!)
 

jennifer1967

Registered User
Mar 15, 2020
25,681
0
Southampton
Thankyou Dunroaming, I appreciate your response. Our three children are aware of their fathers diognosis, I have told them . The issue is my husband does not want anyone to know about his Alzheimers. This makes it difficult for me ! I have also told my siblings. This makes me feel guilty but I felt they should all know . Don't think our children were surprised - they all live fairly close so see their father quite often and of course could see the signs. My husband has periods of being unreasonable, when this happens I simply remove myself from the situation. At other times he is back to who he is. This is early days and I fear for the future. Today is our 50th wedding anniversary so we will be celebrating with family, so looking forward to that.
happy anniversary!! i told people as i came across them. neighbours, kids, relatives, friends. it wasnt a secret and there was no shame in saying. it has been helpful as the neighbours will ask how he is and will help if needed. he can go out and know they keep an eye on him. they know in the men shed he goes to as well. its only the same as saying he has diabetes or COPD, i dont make it a secret.
 

Frances25

Registered User
Feb 28, 2024
10
0
Thank you Jennifer, I know you are correct and I have told my friends and our children. My difficulty is that my husband wants to keep it quiet - he doesn't know I have told people and that makes me feel disloyal and I feel guilty about that ! However I know I need their support and understanding.
We have had a lovely luncheon out today and my husband has really enjoyed it .
I am trying to get my husband to join a men in shed group- I feel sure he would enjoy that, but is not being very responsive! 50 years is a long time and our love has never waned - I am grateful for that.