Waiting for memory clinic referral

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.

I agree with Marmin, my mum died 13 years ago after some years in a care home due to her dementia.
Would say that on the day she was diagnosed she was also discharged , so we had no help support or advice from the nhs from then on.

Please contact Alzheimer’s society who have numerous resources to support those with and those caring for people with dementia.

I am sorry about your dh, it is a cruel disease.

I volunteer for AgeUk's Memory Service. You can access their services at any time even if you haven't had a final diagnosis. They are really good at signposting and offering advice.

The Alzheimer's Society has lots of great fact sheets on their website and a forum called Talking Point.

Admiral Nurses are really good points of contact if you have one in your area. They have a helpline which is listed on the Dementia Society website.

My main volunteering area is helping to deliver Carer Learning Courses which are brilliant for helping you with strategies and also benefits advice and looking after yourself.

There is lots of help out there.

Thank you for your really helpful suggestions - I think I'm going to need them. My mother had dementia towards the end of her life (90s) but was able to be cared for at home until the final 3 weeks, but somehow it seems a lot worse when it's a husband who you've lived with for over 50 years. I often wonder what would happen if both partners in a couple get a dementia diagnosis? I suppose it depends on family support, if available? Increasingly important, I think, to look after myself too if possible!

You have a tough time ahead. My husband had a brain scan march 2025 and was diagnosed with alzheimer's unfortunately a couple of months ago he went downhill rapidly and has now been admitted for respite care. Hallucinations and controlling behaviour admitted for my safety. Nothing prepares you for the empty house and the guilt. My heart goes out to you. Please enjoy every moment whilst he is still the man you know

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

We accessed the memory clinic for my husband by way of a gp referral. We were given an appointment 12 weeks after the gp’s appointment. The appointment lasted 2 hours and three weeks later we went for the results. My hubby has mild cognitive impairment due to severe auto immune encephalitis 3 years ago. The clinic found no evidence of dementia at this time. We found it helpful to know that hiss issues are due to the encephalitis and not anything else. We are now waiting to see the neurologist and explore neuro physio. So the memory clinic can be helpful in confirmation or exclusion of symptoms. Treat it as an opportunity.

My husband was assessed by a memory nurse and found not to have Dementia. I would agree in part but when she asked him his address -she forgot to ask for the postcode. We've lived here for 3 years and he still doesn't remember
He often forgets where we are going . I tell him in the shop to turn left and he goes right. He gets Tesco mixed up with other supermarkets.

Can i just say that when you know someone with dementia,you know 1 person with dementia and not everyone's journey is the same.

Please don't be scared by other people's tales, grannyjacq1.

ordinarygirl, you are entitled to ask to be re-reffered.

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.

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'.

It has taken a year ,but after GP referral and neuropsychological tests at memory clinic my husband (77) has a diagnosis of Mild ( it doesn’t seem mild!)Cognitive Impairment - not yet dementia as we had assumed. He has just started a 14 week’ cognitive stimulation’ course which apparently can help to slow down progression of memory loss. He also had a Drivability test as we are concerned about his driving- he passed 😱- but will be tested again in 6 months. I discovered that Admiral nurses have appointments at Nationwide branches, which I found helpful. My sympathy to all of you going through this too 💐 it’s so hard to see someone you love slowly trickling away.

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.

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.

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..

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.

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.

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.

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.

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.

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.

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 .

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.

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.