1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

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Hi, I'm new here... My husband is 58 with Alzheimer

Discussion in 'I have a partner with dementia' started by karen.b, Jul 10, 2015.

  1. karen.b

    karen.b Registered User

    Jul 10, 2015
    13
    Hi, I have joined the forum today. My husband has progressive Alzheimer. He is 58 years old. Was first diagnosed when he was 54. Are there any forum members caring for a partner who has been diagnosed with the disease at such a young age?
     
  2. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,590
    Female
    Dundee
  3. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,781
    Salford
    Hi Karen, welcome to TP
    My wife was diagnosed at 54 although it'd been obvious something was wrong for a couple of years before that. Being "a woman of a certain age" the doctors dismissed it for quite a while as the menopause, weepy woman the kids have left home syndrome or whatever it took a lot to get them to take it seriously.
    K
     
  4. oldfella

    oldfella Registered User

    Nov 26, 2012
    39
    somerset
    Hello Karen welcome to Talking Point, my wife was 53 when first diagnosed with this vile illness nearly 6 years ago now, the support from each and every person on here are fantastic, from my point of view what I can say is enjoy and savour every moment you have with your husband. Unfortunately my wife has been in a mental health hospital for a month now and today I have been told she will be in for a further 3 weeks and it is looking more and more likely she won't be returning home, to which I am absolutely devastated.
    Don't be afraid to ask for help and advice, whilst there is no cure for this illness there is a lot of great advice from people on here with the experience of caring for their loved ones.
    Keep smiling it really helps
     
  5. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    1,425
    Male
    Cornwall
    I was diagnosed with Alzheimer's age 57 and frontal-lobe-dementia age 60 I'm 72 now still active and going strong on medication Aricept no problems
     
  6. karen.b

    karen.b Registered User

    Jul 10, 2015
    13
    Thanks

    Thank you all for your support , I've felt alone for quiet a while and the situation at home isn't getting any easier. I'm glad i found this forum ,i hope i will be able to contribute from my experience.
     
  7. tryingmybest

    tryingmybest Registered User

    May 22, 2015
    619
    Female
    I'm relatively new on here and am full time carer at home with my elderly mum. You never need to feel alone as theres always lots of advice help and support on here. I have found it very helpful and I hope you do too so post away. I really feel for you as this disease is so cruel and its so very sad especially when a younger person has it. Sending you a hug and hope you get lots out of this forum.vxx
     
  8. LynneMcV

    LynneMcV Volunteer Moderator

    May 9, 2012
    3,546
    south-east London
    Hi Karen, welcome to the forum.

    My husband was 58 when diagnosed with dementia three years ago.

    It's such an unpredictable condition. We've been relatively fortunate in that there were very slow changes in the first two years, and it is really only this year that things have changed more quickly for us, mainly as the result of a couple of UTI's from which he did not manage to recover back to his pre-UTI abilities.

    My main advice would be sort out the wills and POA if you can - after that, go with the flow as best you can. We find it helps to focus on what my husband can do rather than worry too much about what he can't do.

    We also find that humour helps us along this horrible road - in my case my husband has never fought against the diagnosis - in fact in many ways it was a relief for him to be able to have it defined, as he was so down at not being able to get another job once made redundant.

    It's not easy for anybody who has a loved one suffering this horrible disease, but there are a whole set of different problems which face the younger ones, as I am sure you are already finding out.

    I have found this forum a great help in trying to prepare for the future without letting go of the good times that are still here for us. I am sure you will find as much support here as I have - and if anything of what I have experienced will help you, then I will definitely share.
     
  9. PalSal

    PalSal Registered User

    My husband was 49

    Hi there,
    Yes, I think there are a lot of us out there. My husband was 49. Our youngest son was 11. Because my OH had lost his job, for non performance and was not diagnosed until 2 years later we got no disability benefits from his company. This is my pet peeve, I feel very very strongly about it. That companies and managers need to be made aware that a previously high performing employee or executive who is no longer performing could have a physiological problem like Alz.. At the time we (personally) had no idea that people so young could get Alzheimers we thought it was just for elderly.
    We have had a long haul but a comparatively good one. Our insurance company tried to take my OH off Aricept about 6 years ago as it they said it only had an 18 month efficacy for the drug. I got a Prof from Uni Basel(we live in Switzerland)to write them, he told the insurance company to back off as there was no data on such young patients and Aricept. I have never heard from them again and he gets his Aricept still. He was also part of a clinical trial with Novartis called CAD I do not know if it helped him or not. But he is still very much "with us" and is being called "atypical" now as he has done so well. He was always very physically fit, and a daily walker and weekend hiker.
    This is not to say things are perfect. He can no longer take walks in the mountains (or our neighborhood for that matter) alone. He can no longer always read his watch, he struggles to answer his mobile phone even though we selected a new one with BIG numbers and directionals. He can no longer use a computer. He has no short term memory, but does occasionally surprise me by remembering things. He no longer drives (I had to get rid of the car.....as he wanted to drive it anyway-he hit a cyclist at Christmas -no injuries but I had had enough of worrying over it-so we now are living without a car). He has no initiative and needs constant directions to accomplish anything, but he can still do things. He needs to be reminded to eat and drink.
    But he can still dress himself, have some conversation, make jokes sometimes. He can still walk to the store with a small list of items. He has good days and bad days.
    He trys very hard to be helpful where he can be.
    He has been around for important events for our kids, all four are now young adults, the youngest having graduated university in Oct 2014. I no longer have the burden of their educations. He has been around for the marriages of two of our children, our eldest son and walked our second daughter down the aisle. Also the birth of two grandchildren and another is on the way in August.
    So, he has a lot. I am not sure who he remembers and who he doesn't. Our two local kids are very very helpful. I am beyond looking for help in the community, we have some close friends who help when they are in town by taking him to lunch and for a walk.
    It is a long sad journey. The only way to handle it is one day at a time. I am very grateful that I grasped that concept (not all the time but most days). I am not a perfect person with infinite patience....I am just someone trying to do the best I can one day at a time.
    I find this forum extremely helpful and comforting. Good luck. PalSal Switzerland
     
  10. karen.b

    karen.b Registered User

    Jul 10, 2015
    13
    we have none of this Altz in his family , he was always health never went to doctor never took any pills no even for headaches very active with walking and dancing in a group (went abroad with them) It was the last thing i thought of when he started forgetting things .Its just the last 6 months that I've had to start coping with the behavior problem. last October we went to Italy for a holiday with my kids ,had a great time, February this year was in Scotland for a month visiting my parents that's when it all started,.and since then hes been put on new pills which makes him very sleepy and walks around like a zombi....he always wants to go for walks but gets tired really quickly.its hard for me to cope with the change of behavior ,i never thought he could be like that, never in our 33 years of marriage have we had an argument or raised our voice at each other.Its just so hard now....
     
  11. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    1,425
    Male
    Cornwall
    I think a lot of people who have been active in sport at a younger age sports where the head could come in to contact with another such as playing rugby maybe heading a heave football or boxing head knocks epically the frontal part of the head where the inside of the scull is rough like a walnut if the brain come into contact through a blow it will get damage hence dementia a few years later
     
  12. Alan19531953

    Alan19531953 Registered User

    Jun 16, 2015
    36
    Change of behaviour is the most difficult aspect

    The aggressive moments I find the most challenging
     
  13. PalSal

    PalSal Registered User

    I am so sorry Karen. It is terrible. Take care and I hope this forum will give you some comfort.
     
  14. karen.b

    karen.b Registered User

    Jul 10, 2015
    13
    mornings are the worst...

    well I've got through another morning , this time he tried to whip me with his shirt, then calmed down and we managed to have a shower, and i even managed to give him a hair cut. where is all this going to lead to? Since I've joined this forum i seem to understand that the only thing i can be certain of is that it not going to get any easier, but I don't know if i should now be looking for a care home for him . or bring in a live in helper. I wish someone would tell me what the right thing to do is....It breaks my heart to take him out of the house. How can live in help help me ,I think i will still have to go through the morning terror (showering).I don't think he will let anyone else help him in the shower...
     
  15. pamann

    pamann Registered User

    Oct 28, 2013
    2,635
    Kent
    Hello Karenb l have been looking after my hubby for 8yrs, its been very difficult resently as he has been aggressive, l was coping quite well up until then. I didn't want to involve SS, but l have like you l now need help, so my advice to you is grab what you can get, as you will need it, also l have a Crossroads carer, she takes hubby out for 3hrs once a week. It is such a relief to get help.
     
  16. karen.b

    karen.b Registered User

    Jul 10, 2015
    13
    If anyone reads this and their partner is still working i would hand a letter into his work written by his doctor stating he has started taking a pill or whatever .i handed a letter stating he had started taking a pill called memantine, not knowing at the time that would be a cover up for him for the insurance company that he is suffering from an illness.i never thought anything about it when i handed it in, but when they wanted to release him from work because he became incapable to hold his position they weren't allowed to fire him because of the letter,then we managed to get compensation through his works private insurance.He had worked in the company for nearly 25 years.
     

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