young onset alzheimers disease

[sah]

Oh heck...lost my reply!

Thanks for that information Vivienne 3. I've saved your post for future reference as I'm worried sick about how I'm going to manage once OH needs more help. He won't discuss or acknowledge diagnosis or let anyone into the house; that included a cleaner to help me after an operation!

I had thought about introducing a 'friend' when the time comes-he can't remember who my old friends are now anyway. I'll show my social worker your post and see what she thinks. Sounds like a good plan!

Sah.

 

[Badietta]

Hi Mousie

I'm sorry, I did mean to answer your post yesterday, but things sort of overtook me. There are so many of us in a similar situation, as I am sure you have discovered, desperately trying to come to terms with what we had thought of as a disease of the elderly, only to find that we are struggling with it now. Through this site I have made a couple of seriously fantastic friends, whose support I value unbelievably. It is just so important to be able to share one's thoughts and feelings. Yes, about the rotten things, but also about the funny things as well, including such irrelevant issues as the menopause whilst coping with AD!

Do please feel free to come back to me - our lives may feel overwhelmingly hard at times, but we are still alive and living, and there is still a lot of fun to be had with the support of friends on TP.

Badietta

 

[Reds]

Hi

Hi Julie,

Thanks for your message and kind words. My husband was only diagnosed 5 months ago but has had memory problems for 8 and a half years before seeing Prof Fox at Queens Square, London. Life has changed dramatically in the last 3 years, he is no longer able to work or drive, and each day brings about new mental anguish and pain which is torturous for us both. He is such a lovely kind person that has lost social skills as well as multi-skills and can no longer problem solve. We have a loving and supportive family but apart from us he doesn't see anyone at all and doesn't find conversation easy to initiate anymore. You mention that the Alzheimers Association help provide some care for your husband and I just wondered how you were able to set that up?

With kind regards, Mousie.

Hi Mousie

My husband was diagnosed with Alzhemier's at 58 but think he had symptoms for sometime before, he is now 60. I am now 52 and it has been a tough and challenging journey. You are not alone and I hope you will manage. I think its all about adjusting well and being strong. I am amazed what we have managed to get through but we are coping.

Regards, Reds

 

[NanLorac]

Hi Mousie, another spouse trying to cope with the blow of finding out your partner has Dementia. My husband is 62 and I am 58.

It took us a long time to get a diagnoses and we are still waiting to find out what type of Dementia my husband has. Because it took so long to get a diagnoses I was not in touch with the carer group and had no support for months. I kept talking to my son and he would try to reassure me things would be fine and I ended up just bottling things up, crying in the toilet so my hubby didn't know I was struggling to cope.

Then finding out my role had changed, I was now a carer, another thing to take in and cope with.

I have been taking my husband to a Memory Cafe in our area and its helped loads. Everyone is about 10 - 15yrs older but we all have Dementia in our lives so we have lots to talk about. I have also joined the local carer group and the Carer Network in Scotland.
All I have found is a group for under 65s that meets once a month for 2hrs. he could go to other groups but I feel that being in a group where people are further on in this disease is going to make him depressed.
You will always find a friend on here in a time of need but check out your local area there will be a group somewhere.
Take care x

 

[lc19]

early onset dementia

Hiya,
My name is Lynne, my dad was diagnosed with frontal temporal dementia
when he was just 48years old, he is now 53 and is in the advanced stages
My mum and auntie is his main carers but my mum continues to work and
I am at university, I am 21yo and my sister is 16, it's all very hard to cope
with recently especially for my mum and I found this blog through twitter
and I would just like to know if anyone is in a similar situation out there?
it would be nice to talk to someone who can understand fully what it is like,

Many thanks,
Lynne

 

[jenniferpa]

Lynne, welcome to Talking Point.

I am so very sorry to hear what your entire family are having to deal with.

You might want to start your own thread so that you can get the support you need. I have to say, there is only a very small group of people dealing with what you are dealing with (which is fortunate in a way, but not if you want to connect with people of a similar age to you).

Best wishes

 

[hennypenny]

early onset

I am joining in with my story and feel for all of you who have posted in. Im 44 husband is 62 and was diagnosed with early onset alzheimers 4 yeasr ago. We have four children aged 6, 8, 10, 13. Two of those have additional needs are on autistic spectrum! My husband has taken a nose dive since Xmas and it is getting harder and harder to manage him at home. I am looking for respite but there seems little in North East to support younger people who are still active (he can walk for miles with the dog every day), most places are people sitting and clapping seems to be as active as they get.
Has anyone found anywhere that is more suitable. I am exhausted and finding it very hard supporting the children through this at their different ages and levels of understanding. Husband was up wandering last night standing in sons room in the dark then went to kitchen and polished off gluten free chocolate cake which was for son on special diet.....lights all on, burning every night...how do you find the strength to get through this.

 

[BrianaS88]

Ftd

Hi Lynne,
My mother is 58 and still unofficially diagnosed with FTD, primarily what we believe to be Pick's Disease. We noticed signs of speech irregularity about 2 years ago but this year she really has taken a turn for the worse. She has seen multiple neurologists and undergone CT Scans, MRIs, lumbar puncture exams, blood tests, etc. Still doctors can't give us a straight answer but suspicions of Aphasia or MS or Alzheimers (and they're quite unsympathetic about it, offering little to no treatment options and just generally giving us bad news). From all of our research, we know she has degeneration in the frontal temporal lobe. She is unable to form sentences any longer, it's only half phrases and she says "yes" a lot to questions that are not yes or no answers. Her words come out garbled and are more sounds and noises than actual words. She does not process what we say to her correctly, she becomes paranoid sometimes and thinks we are talking bad about her even if we are responding with the utmost care and politeness. She can still function most normally in terms of walking, performing simple tasks, carrying on chores at home, but we have prevented her from driving any longer because she leaves the car light on, doesn't recall how to lock or unlock the door, turns the key in the ignition in a manner that damages the battery, she was getting into small fender benders-it was no longer safe for her or those around her. She regularly leaves doors open/lights on, every morning she burns her coffee or toast. Putting out small electrical fires has become routine for me. She often cries because she knows something is wrong and she can no longer communicate but we have been unable to truly offer her more than supervision and making her feel as loved and comfortable as we can. She resents that she is being treated like a child because she still has the mentality of an adult. Her memory is less impaired than her actual cognitive/language abilities. She went from speaking four languages to barely communicating in Portuguese (her native tongue) and she acts more child-like (the frontal temporal lobe controls your inhibitions, so she acts out more). It has been very difficult on my family and I, we've still got so much to learn so we can make her feel as good as she can. I am 24, I have 3 sisters (21, 22, 26) and my father who is also unable to work because of an open heart surgery and COPD. We all try to work from home to take care of her but we're a family of 6 living off an income of $30k. This has been the most difficult year of my life, and I don't know who to talk to about it. I found this thread and hope to discuss and learn and offer support to people who are caregivers to loved ones with FTD. If anyone has any information, please let's talk. Sending you strength and positivity <3

Hiya,
My name is Lynne, my dad was diagnosed with frontal temporal dementia
when he was just 48years old, he is now 53 and is in the advanced stages...

 

[mollie26]

hi

Hi mousie im Anita like you im a Registered nurse i too have to work as my husband hasnt worked since he was diagnosed 2 years ago he couldnt remember how to do his job so they asked him to leave and it deflated his confidence. My husband is about to go to a Young demenia Unit in shrewsbury we are lucky to be allocated a place. He needs to go as he has been cooped up in hospital for 5 weeks and his agitation is getting worse. Its nice to know you can support each other on this site

 

[Starvin]

I was diagnosed at 52

 

[leicester61]

I get so worried

husband diagnosed last yr, he is 52 but looking back I think he has had this for at least a couple of yrs. since Christmas there have been lots of changes and he wants to cut down his work hours as hes finding it too difficult, he used to do all the shopping, cooking, DIY but not anymore, he gets very snappy now which he never did before. im so scared that he wont be be me soon, our gp even told me to get the poa done asap because he could decline quickly, financially im terrified so ive put the house on the market and hopefully will get a council flat or something! Im sorry for whingeing but I dont want to lay this on my daughters and this just seemed like the best place to come x

 

[sah]

Hi leicester61:

just wondering why you feel you need to sell the house? I would suggest you take some advice before taking such a drastic step. My husband was diagnosed at 59-4 years ago-and I was terrified like yourself at first but there is help out there.

Apologies if you have-but there's a lot of advice available out there and it does seem drastic action!

Do keep posting-people on here are wonderful and very knowledgeable.

Sah

 

[leicester61]

Hi leicester61:

just wondering why you feel you need to sell the house? I would suggest you take some advice before taking such a drastic step. My husband was diagnosed at 59-4 years ago-and I was terrified like yourself at first but there is help out there.

Apologies if you have-but there's a lot of advice available out there and it does seem drastic action!

Do keep posting-people on here are wonderful and very knowledgeable.

Sah

Hi Sah

thank you for your reply, I want to sell and get all our stuff in order now, we have debts ( not a great deal) so I want to clear them, also want to be somewhere smaller that will be easier to manage. we got sold wrong life insurance and mortgage cover, company gone into liquidation so theres nothing we can do. just want to spend time with him without extra stress of bills etc xx

 

[sah]

Hi again:

I would still suggest you get advice-have you contacted the local Alzheimers Association -Citizen's Advice? That way you can get help without risking a bill!

Hope you have a lovely Easter-and the sun comes out!
Sah.

 

[mousie]

Hi mousie im Anita like you im a Registered nurse i too have to work as my husband hasnt worked since he was diagnosed 2 years ago he couldnt remember how to do his job so they asked him to leave and it deflated his confidence. My husband is about to go to a Young demenia Unit in shrewsbury we are lucky to be allocated a place. He needs to go as he has been cooped up in hospital for 5 weeks and his agitation is getting worse. Its nice to know you can support each other on this site

Hi Anita,

It seems we have things in common. Could we become friends on this site and support each other?

There is absolutely no support in our area I have explored far and wide. My husbands condition is declining each day, and he needs social interaction with people more than anything else, before its too late.

Sorry if this sounds negative but I am afraid for the future.

Mousie

 

[NanLorac]

Hi Mousie, I looked up the Alzheimer's website and there are clubs etc in Colchester. http://www.alzheimers.org.uk/site/custom_scripts/branch.php?branch=true&branchCode=13222
There is also a carer group.

Hope this helps x

 

[NanLorac]

Hi leicester61, I am sorry your husband is finding his work difficult now. This is probably causing him to be snappy. Our men have worked to provide for us and now Dementia is robbing them of that ability.

He will be so anxious about his family and the dept you mentioned. Not being able to shop etc is making him feel as if he is not doing his share of the chores. Maybe your GP can give your husband some medication to help with the anxiety for a few months.

Keep posting here, your not alone. x

 

[Sallyanne59]

Young one

Hi, I have just been told I have Alzheimers disease at the age of 53!!!Would love to make contact with other 'younger' sufferers. If any of you near East Grinstead please let me know. Any advise gladly accepted :

 

[leicester61]

Thank you Sah

Hi again:

I would still suggest you get advice-have you contacted the local Alzheimers Association -Citizen's Advice? That way you can get help without risking a bill!

Hope you have a lovely Easter-and the sun comes out!
Sah.

Sah

unbelievably we sold the house within a week, however i could see doug wasnt happy, when i questioned him (intently) he got very upset and said he really wanted to stay in our home......so i took the house off the market feeling awful about the person who had bought it but doug comes first. i am having hypno therapy to help with my anxieties and it seems to be helping, so thanks agin for your help xx

 

[leicester61]

Thank you

Hi leicester61, I am sorry your husband is finding his work difficult now. This is probably causing him to be snappy. Our men have worked to provide for us and now Dementia is robbing them of that ability.

He will be so anxious about his family and the dept you mentioned. Not being able to shop etc is making him feel as if he is not doing his share of the chores. Maybe your GP can give your husband some medication to help with the anxiety for a few months.

Keep posting here, your not alone. x

Thankyou for your post nan, it really does help being able to come on here every now and then, and ive now got help with my anxieties and NOT selling the house xxx