Husband with suspected FTD

[Elaine D]

My 67 year old husband is awaiting a neurology appointment, having ‘done the rounds’ for the past 5 years after I raised concerns with our GP. Last year it was clear there was something very wrong and he was seen by a pschychiatrist in the Older Person’s Service, but I was not able, nor invited to speak to him alone, which made it very difficult to discuss husband’s problems. Outcome was negative - he did not have dementia, just cumulative effect of a head injury he’d had 20 years ago, which I assume is a euphemism for I don’t know what this is. He was not given any follow-up despite a CT scan showing some frontal lobe deterioration. Alone again.

Since then matters have moved apace & his symptoms have worsened to the point where he asked me what a toothbrush was & what it was for. He’s taken to wearing 2 pairs of trousers over 2 pairs of longjohns, and his taste in food has radically changed. He’s totally preoccupied by his clothes and the texture of food. At first I assumed he had problems with his memory, but now I’m not so sure. It’s his ability to name things & understand what they’re for that’s disappearing. I’m constantly being asked ‘what’s that’ and ‘where does it go’ (I’m often finding food in the bookcase, because he can’t remember what a fridge is).

Today I lost it and shouted at him after he put clean clothes over dirty ones & refused to have a shower even though it’s been nearly a week since I last persuaded him into the shower. Each day I resolve to be more patient, keep my sense of humour, but knowing that there’s a 19 week wait for an appointment plus a wait for the inevitable scans, isn’t helping.

He’s now in the shower, but I’m not sure if he’s remembered which is shampoo and which is shower gel. Ho hum.

Just writing this has helped. I don’t know if this delay in getting a diagnosis is common, but it’s soul destroying watching someone you’ve been with for nearly 50 years disintegrate before your eyes.

 

[karaokePete]

Hello @Elaine D, you are welcome here and I hope you find the forum to be a friendly and supportive place.

Unfortunately it can take a long time to get a diagnosis. Some members have success if they write a list of all their concerns and the behaviours of their loved one and hand this in at the start of any appointment.

I hope you have time to take a good look around the site as it is a goldmine for information. When I first joined I read old threads for information but then found the AS Publications list and the page where a post code search can be done to check for support services in ones own area if a diagnosis is given. If you are interested in these, clicking the following links will take you there

https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

https://www.alzheimers.org.uk/find-support-near-you

You will see that there are Factsheets that will help with things like getting care needs assessments, deciding the level of care required and sorting out useful things like Wills, Power of Attorney etc., if any of that hasn't already been done.

On the communication front, a few good tips can be obtained from this thread. Just click the link https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/

Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.

 

[nellbelles]

Hello @Elaine D and a warm welcome to TP

I’m sure that your patience is being stretched to the limit waiting for your husband’s appointment.
With regards to shouting, Try not to beat yourself up over it we are all normal people with a limit on how much we can stand befor we snap.
I hope now you have found us you will continue to post

 

[canary]

FTD is particularly difficult to diagnose as it frequently doest show up in the early stages on the Mini Mental State Examination (MMSE) as this test is designed for Alzheimers and tends to focus more on memory and knowing where and when they are - things that people with FTD do not have problems with until quite late in the disease. FTD is an umbrella term for several different variants:- it sounds to me as though your husband may well have the semantic variant.

The diagnosis depends on the observations of someone who knows them well, but it is often difficult to say what is really happening in front of them. Something that I do is to write a letter explaining the things that you are concerned about and either send it in beforehand, or hand it discretely to one of the nurses without him seeing. That way the doctor will know about what you are seeing at home before your husband is called.

Im giving you the link to the FTD Association - it is in US, but the condition is the same and the site is full of useful information.
https://www.theaftd.org/what-is-ftd/disease-overview/

 

[SaraKate]

I told my husband I had concerns and I reminded him of the days and dates that he had forgotten a word or forgotten an appointment, I kept a journal of each little event and it adds up to quite a list. I was surprised that he did not take exception to it at all and agreed that I should show it to the neurologist. As your husband sounds so much worse (I am so sorry) he might not object to you taking your list and you might be able to openly say, I'd like you to include this in his notes' and hand it over. Neurologists know that the partner is observing, they understand that you will be more aware than someone whose abilities are impaired. But I do understand how terrible it is to see someone decline while waiting for an appointment. I hope you can find ways to rest and recover some of your own life even though this is going on.