Waiting for memory clinic referral

Like many others on GN, my OH, aged nearly 77, has been on medication for Alzheimers for 2 years. He's also on a clinical trial for one of the newer drugs, Donanemab,which is meant to slow down the progression. As mentioned above, use the Alzheimers website, where there's a wealth of information. My OH is still driving, although not often, and is reluctant to give up completely. We have a GP appointment soon, and I am hoping she will refer him for a driving assessment, although he may pass, I hope he doesn't. Please feel free to send a PM if you want to ask anything.

Lilypops

My DH has started with memory loss. He’s fixated with his tablets that I put in a weekly dispenser. He asks me two or three times daily about them where are they, what are they for etc. he doesn’t remember things I have told him.
But the worse thing is. He falls asleep all the time most of the day, he’s 92. But reasonably fit. But why is he asleep all the time?

It's very, very normal and healthy for older people to nap during the day. It can be beneficial to mental performance.

<https://www.ncoa.org/article/a-guide-to-napping-benefits-duration-and-best-practices/>

Granonthemove

I’ve read the posts about husbands with diagnosed Alzheimer’s/ Dementia but my concern is how do you get your husband to agree to see a doctor? Mine has increasingly alarming loss of short term memory and he knows it. If by chance I say something like “ I told you that yesterday “ there can be an explosion of anger based in his own frustration at lack of memory. He refuses to have a hearing test and that’s another issue and likes to set himself apart reading the paper or books. His siblings are also reclusive. I am noticing this more and more, worrying about it but can’t see how to get him to get help, without him getting angry. Any advice gratefully received.

Your GP can't discuss a patient with you; but remember that doesn't work both ways. You can talk to GP about his patient, DH . Make yourself an appt with GP to discuss your anxiety about your spouse's anger and the reason for it. Thus informing GP of what you've noticed in DH.

Your GP could then invite DH to attend "a routine health review the Practice is offering to all men his age" .

They could also put you in touch with any local support groups/ advice services for families dealing with dementia.

kittylester

One suggestion is to ring his gp and tell him your concerns. Hopefully, the gp will talk to your husband the next time he sees him and give him an assessment and a referral if he thinks it's necessary.

The GP might even invite your husband in for a 'general age related health check'.

Yes, speak to your GP. We did this with a relative and they came round, in her case, saying they were there for routine checks as they hadn't seen her for so long. She got a formal diagnosis of dementia a few months later.

Has your husband had a diagnosis? Memory lapses can be signs of other things not just dementia - an infection for instance.

My DH has started with memory loss. He’s fixated with his tablets that I put in a weekly dispenser. He asks me two or three times daily about them where are they, what are they for etc. he doesn’t remember things I have told him.
But the worse thing is. He falls asleep all the time most of the day, he’s 92. But reasonably fit. But why is he asleep all the time?

We've found AgeUK very useful.

Have now got a date in a few weeks' time for a 90 minute appointment for DH - at a specialist CAMS centre. Not quite sure what to expect, but at least I will probably get a diagnosis and some advice. Some really helpful comments from gransnetters - thank you, all. It's good to get others' experiences to share problems. Do keep posting and let me know how you are progressing if you're in a similar situation. It will affect so many of us now.

Grannyjacq1, I am in the same position . Although my DH was diagnosed over two years ago. Like kitylester I have had many years working as a volunteer with The Alzheimers Society. I have a sound understanding of the disease. However now it is knocking on my door I have a deeper understanding. I cared for my lovely Mum when she had dementia, but this is a different ball game altogether! I always knew that as Mum's condition progressed I had my DH beside me. I knew that when she died my life would eventually get back on track. This time my life and future is precarious. You are correct it is so much harder when your husband has dementia. Like you we have been married a long time - 52 years. Watching him change breaks my heart. I am very slowly losing him and can no longer rely
on his judgment. Do look at the Alzheimers Society forum , you will find great support there.
My husband is no longer driving - thank goodness ! He passed 2 driving assessments and in my opinion that should not have happened- he ticked the boxes on the day but when driving me his judgement was appalling- it was an absolute nightmare! We too have supportive children.
Good you have POA , I sorted that when I could see the early signs of dementia. Like you I am getting to grips with financial matters - not easy.
After my DHs memory test and assessment we had diagnosis a few weeks later. I take a day at a time and try not to think too far ahead. Life is difficult at times especially when DH loses keys , ipad , medication and accuses our 15 year old GS of stealing from him and breaking into the garage to steal tools! Nothing I or our children say will convince him otherwise!
Please keep posting 💐

Sorry for your loss, KathrynP. But thank you so much for your positive advice and very helpful suggestions. I'll try to take it one step at a time, instead of worrying excessively about all the 'worst scenario' situations.

To qualify for Council Tax discount the person with dementia also has no qualify for Attendance Allowance.

Council Tax relief is 25% if two adults share the house or 100% if the person lives alone..

Ask your local Dementia group. Even if it is not specifically dementia, we have a volunteer run music group, a puzzle group and coffee and chat that helps people whose cognition is not what it was.

Sometimes it is just a result of poor hearing, eyesight or isolation that reduces cognition and these activities can help pick up. Suggest the U3A - they have lunch clubs etc that can help men - who are often more likely to isolate in later life.

Physical activity is also recommended - can he swim, bowl or just join a walking group?

Just an aside - if diagnosed with dementia, you can often get a council tax reduction

Granonthemove

I’ve read the posts about husbands with diagnosed Alzheimer’s/ Dementia but my concern is how do you get your husband to agree to see a doctor? Mine has increasingly alarming loss of short term memory and he knows it. If by chance I say something like “ I told you that yesterday “ there can be an explosion of anger based in his own frustration at lack of memory. He refuses to have a hearing test and that’s another issue and likes to set himself apart reading the paper or books. His siblings are also reclusive. I am noticing this more and more, worrying about it but can’t see how to get him to get help, without him getting angry. Any advice gratefully received.

I feel your pain. Mine refuses to acknowledge, but picks up any small memory slip of mine to suggest it is me. I do have the usual age related (walking into a room and wondering why?)
He is really deaf but will not wear his aids and so loses the thread of TV or conversation.
He gets very angry with me, calling me a liar if I suggest we have already discussed something (today he came home with cream instead of cream cheese even though we had a conversation about where to find it - half way down the cheese aisle next to the Philadelphia).
He makes plans for times when I already have something booked for months, but forgets to tell me or add his plans to the calendar.

I agree with a previous poster, the Admiral Service were marvellous. We also had an Admiral Nurse in our town who was so helpful. She had the answer to all my queries and referred to website, advised on different homes etc.
I lost my husband on Valentine's Day this year and he had dementia for 5 years. Looking back it was hard but we were lucky compared with many as he recognised everyone to the end and it was really his mobility he struggled with. He didn't get angry I was able to care for him at home without help but shortly before he died he knew he was getting worse and said he thought we should get some help after Xmas but events overtook us and he died 6 weeks later. He would not have liked going in to a Care Home so he was spared that and I look back and think of the countless sleepless night I had worrying about Care Home and fees so try not to overthink it and look too far ahead or you can end up worrying about things that may not eventually happen. I found that dealing with each problem as it arose better so when he had trouble with the stairs for instance we got an occupational therapist to visit and she gave us advice on bannisters and a marvellous newell post handrail that helped keep him safe on the curve of our stairs etc. We fitted chrome handrails in the bathroom and shower and got a handle to help him get out of bed. The NHS will provide some but we sourced most ourselves easily online. I was grateful when he voluntarily cut up his license and sent it off to DVLA. ( l wish he had kept it though as it is an important identification document and had another 3 yrs to run!). It is difficult but you will know when you need extra help and don't be afraid to ask for it or it will impact your health as well. You are doing the right thing with POA etc. I believe Dementia UK have a helpline and a forum to discuss issue and it is often useful to get other people's point of view.

Thank you to all who have given me so much helpful advice. As one wise gransnetter said, everyone's 'dementia' is different, which makes it very difficult to predict future outcomes. At least we have had 50+ happy years together, have supportive children and grandchildren. I do hope that others who seem to be in similar situations find some way of resolving/coming to terms with their problems and hope that our new PM's 'national care service' is established in time to be of assistance to some of us before it's too late. But you have made it clear that there is some amazing help out there .... it just doesn't seem to be very 'joined up' at the moment.

Marmin

My experiences ten years ago when going through the same procedure with my mother was that there were countless leaflets but no practical help. It sounds like you have already taken the most important steps, well done. One resource I did find invaluable was the forum of the Alzheimer's Society website. Free to join and peopled by many others in the same situation. I found several threads written by people who had experienced what I was going through and much of the advice was invaluable,- particularly in helping me to understand what was happening and how best to cope and deal with it.
I wish you well.

Exactly this, I second it, loads of leaflets offering help, loads of agencies, lunch clubs etc, all useless or waiting lists so long that you are contacted several months after the person has died.Much better off with a forum where real people are going through the same things as you .

It is Mild Cognitive impairment as they told you, which is not so mild when it affects you and your family. Of course they see full blown Dementias all the time, so to them this is a good result. Quite honestly the diagnosis makes little difference except for the ongoing support, it is how it affects you your husband that matters and it is hard to accept when you feel they say it is only mild.

Eddieslass

My husband is 92 and was diagnosed at a memory assessment clinic about 10 years ago with Mild cognitive impairment. He knows his memory is a lot worse and can't always think of words that he wants to say etc. so saw the doctor there again recently after I requested it. He had a brain scan a few weeks previously. This apparently showed little change from the earlier one and he passed the tests with quite high marks. She said he definitely doesn't have dementia and discharged him once again.
Whilst of course we are relieved it's not dementia - what the heck is it? Apart from old age!! It's so frustrating for us both. It has affected his ability to do simple adding up etc too which makes him so irritable and upset as he was always so good with his accounts.
In a strange way, I wish it were a diagnosis of dementia as feel we could attend more clubs etc.

You should not need an official diagnosis to attend your local Memory cafe which they have all over the country. In ours it is good enough to attend saying you are struggling with your memory but have so far not received an official diagnosis. Memory cafes are usually for both the cared for and the carer, some times they do separate activities sometimes together. Great support and so good to be with likeminded people. You will make lots of friends too. I have been volunteering for ours for 16+ years.

There are good results from the cognitive stimulation courses and you can, of course, do similar stimulation at home.

In Leicestershire we run MCI Cafes which our members and their 'Carers find useful. We have exercise sessions, diet advice and social interaction.

Fewer diagnostic scans are being done now.

My husband is 92 and was diagnosed at a memory assessment clinic about 10 years ago with Mild cognitive impairment. He knows his memory is a lot worse and can't always think of words that he wants to say etc. so saw the doctor there again recently after I requested it. He had a brain scan a few weeks previously. This apparently showed little change from the earlier one and he passed the tests with quite high marks. She said he definitely doesn't have dementia and discharged him once again.
Whilst of course we are relieved it's not dementia - what the heck is it? Apart from old age!! It's so frustrating for us both. It has affected his ability to do simple adding up etc too which makes him so irritable and upset as he was always so good with his accounts.
In a strange way, I wish it were a diagnosis of dementia as feel we could attend more clubs etc.

chicken

My husband, who is 90, has no memory of any past events or of where he has lived, doesn’t recognise family members, frequently confuses night and day,waking me at 6 am to ask why his tea isn’t ready. He was referred to the memory clinic over a year ago and we have heard nothing…..I checked up with his doctor last week and was told that it does take quite a long time! In the meantime, I, also 90 and getting increasing mobility problems, am left struggling alone as his sole carer. I despair of the NHS. Where is the help when you need it? We could probably afford care home fees for about 18 months but what happens after that? He is physically very strong and will probably outlast me. There’s no option of selling the house as it cannot be sold separately from the main house which belongs to another family member.

Once his money runs out he will have a financial assessment and social will step in to pay, they take what they can from his income, but leave you some for certain expenses. If he goes to a care home you may not have much of a choice as to where he goes, once you are no longer self-funding, however they need to give you at least one choice which meets his requirements without any top up. If he starts off self-funding i. a care home ask them if they take funded residents so he can stay once the money runs out. It is awful to have to move them if they are settled where they are. You could have a look at the Website Who pays for care.

Granonthemove

I’ve read the posts about husbands with diagnosed Alzheimer’s/ Dementia but my concern is how do you get your husband to agree to see a doctor? Mine has increasingly alarming loss of short term memory and he knows it. If by chance I say something like “ I told you that yesterday “ there can be an explosion of anger based in his own frustration at lack of memory. He refuses to have a hearing test and that’s another issue and likes to set himself apart reading the paper or books. His siblings are also reclusive. I am noticing this more and more, worrying about it but can’t see how to get him to get help, without him getting angry. Any advice gratefully received.

Have patience with him, he can;'t remember, so you saying you told him yesterday is of no use, he can't remember. Repeating as if it was first time you told him is the only way, confrontations is a definite no no. Turn the table and think what is it was me, that remembers very little, it is hard to live with for both of you, but to make it bearable you need to go along with him and just repeat and agree. Then do what needs doing regardless, so much easier for you both believe me as hard as it is.

hjmhill

I found the Admiral nurses helpline to be particularly useful with practical and emotional issues.

Admiral nurses are totally indispensable as well as your carers support group in your area. It will be your go to through this often difficult time which is probably ahead of you. My advice is to keep a diary of all the things you notice along the way, so you can discuss the issues with the consultant at the Memory clinic and later with the Admiral Nurse which will hopefully be allocated to you. Wishing you peace ahead, take each day as it comes and try to live in the now once you have all the paperwork in order..

My husband, who is 90, has no memory of any past events or of where he has lived, doesn’t recognise family members, frequently confuses night and day,waking me at 6 am to ask why his tea isn’t ready. He was referred to the memory clinic over a year ago and we have heard nothing…..I checked up with his doctor last week and was told that it does take quite a long time! In the meantime, I, also 90 and getting increasing mobility problems, am left struggling alone as his sole carer. I despair of the NHS. Where is the help when you need it? We could probably afford care home fees for about 18 months but what happens after that? He is physically very strong and will probably outlast me. There’s no option of selling the house as it cannot be sold separately from the main house which belongs to another family member.

It’s very hard, I have little useful to add, except to say that I’ve decided to pay for an Alzheimer’s blood test for my DH. He has also been diagnosed with MCI after 6 years of noticeable memory issues- possibly longer, but I first noticed when we were thrown together at home during covid lockdown, I sympathise with you Granonthemove because we had terrible rows at first and he accused me of gaslighting him. However, he must have been worried because he contacted the GP by himself and was referred to the memory clinic. He was told he was OK when we first went in 2021, but got the MCI diagnosis - when we went back last year, but was then discharged with leaflets and general advice. He has had a brain scan which doesn’t show anything, but I’ve now decided to pay for a private Alzheimer’s blood test. Not cheap at £450 but would show up if there are signs of Alzheimer’s plaque, and if so I will go back to the GP. I gather that these tests are being trialled in Scotland on the NHS, but not in England.