New To Forum - Looking for Support and Friendship

[Missyclaire]

Hello,
Please bare with me, I still can't believe I am here. First of all, thank you for having this forum and for allowing me to join. My husband is 58. Last year we were on a camping trip celebrating our anniversary and looking forward to early retirement. He was in a very stressful job and we have lived simply for years in order to retire early. Anyway, I woke up early on our trip one morning and saw that my husband had left his banjo out in the rain overnight. At that moment, I knew something was wrong. He had been losing things for a while, but that seemed "normal" since he always was scatterbrained. But it was almost like a watershed moment when I saw that banjo, the thing he loves most in the world and is always so careful and protective of carelessly left out of its case in the rain.

So that was one year ago and things have continued to come up since then. His short term memory with conversations has noticibly deteriorated. It frustrates him when I bring it up, so I don't say anything and just repeat myself as if I am saying it for the first time. The strange thing is, he remembers everything he reads. When he took an online memory test, he scored 22 out of 22! So I know it's early if it is Alzheimer's, because the changes are subtle.

I've only mentioned it to three close friends and even told them, it was probably just the stress of retiring. But now I see the progression because I've been keeping a journal and I know I will need support. So that is why I am here. I can't talk to anyone else about it because that would be dishonoring to my husband. He's a brilliant man who spent his entire career caring for others. It makes me so sad to think of him deteriorating and slipping away. I know what this journey is like after watching my mom go through it with my stepdad. But my dear husband is so much younger.

Well anyway, I will try to stay hopeful and think of the positive things. So that is why I joined the forum. Thank you for listening. May God bless each one of us on our journey with our loved ones.

 

[Beate]

Has he been to see a doctor yet? It doesn't necessarily have to be dementia, but if it is, there are many different forms with different symptom sets, so it might be a good idea to get him checked out. I'm not a doctor, but from what you describe and his age, it might be a variation of fronto-temporal dementia.

https://www.alzheimers.org.uk/downl...factsheet_what_is_frontotemporal_dementia.pdf

Btw, talking about someone's illness isn't dishonouring them. I'm glad you can talk about it here, but if you need help from the authorities, please don't put it off due to misplaced pride.

 

[Shedrech]

hello Missyclaire
a warm welcome to TP
I'm sorry you have had to find us, but glad that you have as this is such a supportive and compassionate community - you can come here with anyting that is on your mind and someone will have some helpful thoughts for you
it's a good idea to keep a journal of your husband's behaviour and the help you give each day - it will be very useful to the medics when you get them involved
it would be worth chatting with your husband's GP as there are other conditions which present with some similar symptoms eg stress, depression, vitamin B12 deficiency ... so the GP would want to check on those as well as consider whether dementia is at work - as for the memory tests, it is known that some people have developed the brain functions/elasticity to mask the effects of dementia for quite some time, so do well in tests but clearly, to those who know them well, are not 'themselves' - that's why diagnosis is a mix of testing by the medics and looking at the changes in the person, which comes from the family
maybe send the GP a note of the changes you have seen and ask if they could call your husband in for a well man appointment
whatever is going on with your husband, it's not a bad idea for any adult with financial assets to organise Powers of Attorney, both for property & finance, and for health & welfare - maybe suggest to him now that you both arrange for these for ' just in case ' - as long as you each have another Attorney to act jointly and severally, and/or a named replacement, you can be each other's Attorney, so your husband need not realise you have any particular reason to organise these now - if he would be a bit suspicious say an acquaintance mentioned they are doing them and it seems like a good idea ...
anyway, now you have found us keep posting if you have anything to get off your chest
best wishes to you both

 

[Philbo]

Hi Missyclaire

Welcome to the forum.

As others have said, it's worth trying to get your GP to investigate all possible causes for his memory weaknesses.

My wife, who has fronto temporal dementia (FTD) did quite badly on the memory tests but our GP still dismissed it as "we all forget things and repeat ourselves as we get older" - despite her only being about 62 at the time! (she's 66 now).

When we did get a referral to the memory clinic, someone initially did a home visit and recommended getting LPA's in place. It took some doing, as one of the first signs of her problem was she had difficulty signing for things. Lots of scrap paper and practising before each of the NUMEROUS boxes on the forms were completed.

Good luck and keep us posted.

Phil

 

[dancer12]

Hello,
Please bare with me, I still can't believe I am here. First of all, thank you for having this forum and for allowing me to join. My husband is 58. Last year we were on a camping trip celebrating our anniversary and looking forward to early retirement. He was in a very stressful job and we have lived simply for years in order to retire early. Anyway, I woke up early on our trip one morning and saw that my husband had left his banjo out in the rain overnight. At that moment, I knew something was wrong. He had been losing things for a while, but that seemed "normal" since he always was scatterbrained. But it was almost like a watershed moment when I saw that banjo, the thing he loves most in the world and is always so careful and protective of carelessly left out of its case in the rain.

So that was one year ago and things have continued to come up since then. His short term memory with conversations has noticibly deteriorated. It frustrates him when I bring it up, so I don't say anything and just repeat myself as if I am saying it for the first time. The strange thing is, he remembers everything he reads. When he took an online memory test, he scored 22 out of 22! So I know it's early if it is Alzheimer's, because the changes are subtle.

I've only mentioned it to three close friends and even told them, it was probably just the stress of retiring. But now I see the progression because I've been keeping a journal and I know I will need support. So that is why I am here. I can't talk to anyone else about it because that would be dishonoring to my husband. He's a brilliant man who spent his entire career caring for others. It makes me so sad to think of him deteriorating and slipping away. I know what this journey is like after watching my mom go through it with my stepdad. But my dear husband is so much younger.

Well anyway, I will try to stay hopeful and think of the positive things. So that is why I joined the forum. Thank you for listening. May God bless each one of us on our journey with our loved ones.

Hi Missyclaire:

First welcome to Tp. You will find comfort, knowledgeable advice, sympathy, huge warm hugs, much love, understanding and the list goes on & on.

Secondly, good for you for keeping records, they will be most helpful to your GP, other specialists, caregivers and both yourself and your husband when coming up with a diagnosis.

My husband who was 63 when he was diagnosed with FTD gets angry & upset when I mention something. He believes there is nothing wrong with him, it is always me, I'm the one who is always wrong. When he was diagnosed my world fell apart. My past, my present and my future all gone in one second. It is an awful illness but worse still when they are so young. My husband had all the tests and they all came back normal but the MRI told a much different story. Have your GP do some tests including an MRI. It maybe nothing.

Anyway keep posting, someone is always listening and you'll get good advice. It's a good place to get your feelings out. It's never good to keep them all bottled up inside. So rant, rant & rant away some more

 

[Missyclaire]

Thank You!

Thank you all for your kind support! There is more to the story that I believe it's ok to share here since we don't live in the U.K. and therefore can be even more anonymous. My husband is a physician, board certified in internal medicine and geriatrics. His whole career was spent taking care of the elderly, many of whom had dementia. He was well loved by patients and families alike for his kind manor and keen diagnostic skills. So he is aware of all the different types of dementia and the progression of the disease. I'm sure that if he does have Alzheimer's or another progressive type of dementia we will discuss all the particulars once it is diagnosed.

In the mean time, I am happy to have this forum to share my feelings. That's all I really need for now and I so appreciate it since as Philbo said it's not good to keep everything bottled up inside. Thanks again,
Missyclaire

 

[Beate]

Please don't be disappointed if he doesn't want to discuss it at all - thinking that nothing is wrong is a common trait with dementia.