Husband has mixed dementia diagnosed 2 years ago at 57

Discussion in 'Welcome and how to use Talking Point' started by Jackson1, Jun 14, 2018.

  1. Jackson1

    Jackson1 New member

    Jun 11, 2018
    4
    My Husband has a stroke 5 Years ago and has had several TIAs and 2 years ago was diagnosed with mixed dementia at 57. I knew that something was wrong as his memory had deteriorated and his behaviour was different in so many ways. He has never come to terms with it and probably never will, my family have been amazing but this last week has been so tough as I just feel as though I can’t cope with it all. I feel as though I’m loosing a bit of him every day and I just don’t know which way to turn. He has sundowners and at night must ask me the same things 20 times which I’m hoping is all normal for his condition. No one prepares you for this, don’t think they could really but it’s like living with another person some days and we have been married 39 years this year . To look at him he looks fine but he is far from it. How ever do people cope with this horrible disease.
     
  2. kindred

    kindred Registered User

    Apr 8, 2018
    1,512
    Welcome and you will find wonderful, informative friends here. Yes, the questioning and the sundowning is normal for the condition and I am so sorry he has this at his young age. Thank goodness you have an amazing family. Please keep posting, talking to us will help, I promise. Have you got any kind of caring support? Are you still working? Say more when you can and all sympathy, I have been through this with my OH too, so many of us have. Gxx
     
  3. canary

    canary Registered User

    Feb 25, 2014
    7,190
    Female
    South coast
    Yes it is all normal for dementia - including the inability to understand that there is something wrong.

    I have found this the hardest thing. My OH is 63 and I am 61. We should both be earning and looking forward to our retirement, but he has been medically retired and I have taken early retirement to care for him.
    There is the loss of OHs personality, our relationship, his skills and support, the loss of my career, the loss of our dreams and plans for the future - too much loss. I no longer feel like a wife - I am his housekeeper, or lodger. It is a form of grief; anticipatory/ambiguous grief and it is hard.

    I dont know how we cope, really - we just do and I think that Talking Point helps as we are all in the same boat.
    .
     
  4. marionq

    marionq Registered User

    Apr 24, 2013
    4,797
    Female
    Scotland
    The early stage is often the worst as you adjust to a new reality. The PWD may still be active and so much harder to look after. That was certainly my experience and two years into the disease I felt suicidal as his illness controlled my life and my every waking thought. We are now six years down the road from diagnosis and my husband has declined in mobility but is easier to care for in many ways because he is not so demanding physically. Instead of six mile a day walks he can only walk about 10/15 minutes so I can relax knowing he is not going to disappear and need a police search.

    Partly this is just progression of his condition but I think too that the anti depressant Trazodone which is the only medication he takes, apart from eye drops, has played a part in calming him down. If nothing had changed I couldn't have coped. We have been married 53 years.
     
  5. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    66,875
    Kent
    I don`t know how we cope either @Jackson1 .

    I don`t know how I coped in the past and now I don`t need to, I read the situations others are in and don`t know how they manage as they do.

    All I can say is it`s a labour of love for most of us and there`s no question of opting out. It`s a heartbreaking situation to witness the changes and challenges and even more so when the person with dementia is so young and all plans for the future are denied them and their partners.

    I constantly reminded myself that however difficult it was for me, it was my husband who had the dementia and it wasn`t his fault. That and Talking Point saw me through.
     
  6. karaokePete

    karaokePete Volunteer Host

    Jul 23, 2017
    3,045
    Male
    N Ireland
    Hello @Jackson1, welcome to TP. I hope you will find the forum a friendly, informative and supportive place.

    I'm in a similar place to you in that my wife has early onset Alzheimer's and vascular damage. Whilst life has become an emotional roller coaster and every day has dementia involved I just decided that I would ensure that we carried on much like before and we are doing pretty well - just the occasional crisis added to the daily niggling torment!

    If you think it would help to check out any support network in your area you can do a post code check by following this link https://www.alzheimers.org.uk/find-support-near-you

    Here is a link to a Factsheet about Dementia that may answer some of your general questions https://www.alzheimers.org.uk/sites/default/files/migrate/downloads/what_is_dementia.pdf
    Here is a link to another that discusses various behaviours https://www.alzheimers.org.uk/sites/default/files/migrate/downloads/changes_in_behaviour.pdf

    I hope these help, but do keep posting, even if just to vent feelings, as you will get support here from people who travel the same bumpy road.
     
  7. kindred

    kindred Registered User

    Apr 8, 2018
    1,512
    My dear, this is so very hard. Canary, you have been so supportive and helpful to us. I know, everything changes for the future, completely. Many times I felt like a slave. Know that sounds strong, but it's how it got and I know I let it go too far before he had his accident and had to go to hospital, thence to a nursing home. I don't know how we cope. I used to look for tiny points of light each day. Its especially hard when there is no chance of improvement whatever we do. We are teaching ourselves to endure. With you all the way, canary. You are such a wonderful person. Gxxx
     
  8. LynneMcV

    LynneMcV Volunteer Moderator

    May 9, 2012
    3,008
    south-east London
    I am so sorry you and your husband are going through this @Jackson1.

    My husband was also diagnosed young, just a couple of days after his 58th birthday.

    We were fortunate in many ways - not least because my husband immediately accepted the diagnosis and was relieved to know why he was no longer coping as he once had - and that helped me because I didn't have to face the denial and anger that so many in this situation go through.

    That's not to say it wasn't challenging in its own way. As you have said, the person can look perfectly fine and as such, so many people do not understand what we or our loved one are all going through.

    The other fortunate thing was that for the first four years the disease was relatively slow moving. Yes, there were blips here and there, but for the most part we were able to live a reasonably ok existence, albeit bashed financially by the fact that my husband had to retire on his works pension and I had to gradually reduce my working hours over the years as his needs increased.

    What helped me was the information and support I received (and am still receiving) from TP; getting us out and about to as many of the activities we'd enjoyed pre-diagnosis as we could (holidays, coach trips, meals, theatre, cinema, social events etc). However, we also made changes by joining groups which did understand the disease - in fact we were lucky to have a variety of options including several memory cafes, a library based memory group, and a fun choir.

    I didn't want our lives to revolve around nothing but the diagnosis of dementia, so it was important to maintain a normal and balanced life for as long as we could with a foot in both the pre-diagnosis life and post-diagnosis life so that as things progressed we would not be left floundering.

    We are now six years into the diagnosis and my husband is in the last stages of the disease. Our lives have changed greatly over the years, our relationship has been tested beyond measure at times but I feel closer to him now than I ever have.

    Lately, I often look back and remember with happiness the things we were able to do for as long as we did - and yes, I often wonder how we managed to get this far when I recall the more challenging times too.

    All I can advise is try not to dwell on every single change you see or constantly look for the next one, note them and make changes as and when necessary, but don't let the diagnosis rule your lives.

    Concentrate on what can still be done rather than what can't, prepare, offload or ask advice here on TP whenever you need to (there is always someone who has gone/is going through a similar situation and it helps so much to know we are not alone).

    I wish you both strength and understanding as you go forward.
     
  9. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    670
    Female
    South of the Border
    Did I write this? Canary???? Because I certainly feel that I did. We are a few years older, but our situation is so exactly the same as yours and your OH - precisely - apart from perhaps , we have only been together going on 8 years, and are not married - don't know if you and your OH are, but people say to me, why don't I just walk away, how can I? I still love my poor ould fella even though he is not the same......
     
  10. kindred

    kindred Registered User

    Apr 8, 2018
    1,512
    Absolutely Mary Joan. I live for that kind of fidelity, too. Gxx
     
  11. Jackson1

    Jackson1 New member

    Jun 11, 2018
    4
    Thank you for all your posts and kind words, I was just wondering if many of you have had to cope with their partners being violent and agressive which is totally out of character. Last week my Hubby was very violent in bed and I had never seen him like this before and his psychotic episodes of talking to someone have also worsened. This only happens at night as the day goes on he seems to get worse. He owns up to talking to someone who is in his head too.
    It is so hard seeing your loved one of so long changing and it’s as if you are loosing part of them every day.
     
  12. canary

    canary Registered User

    Feb 25, 2014
    7,190
    Female
    South coast
    I am very concerned about the psychosis and violence @Jackson1 and I do think you need to contact someone about this - either the Community Psychiatric Team, or your GP - to look at medication to help.
    In the meantime perhaps it would be a good idea to sleep in another room. If you are in danger, do not hesitate to call the police. It is imperative to keep yourself safe.
     
  13. karaokePete

    karaokePete Volunteer Host

    Jul 23, 2017
    3,045
    Male
    N Ireland
    What you describe sounds like some extreme version of sundowning. My wife is also most active and hallucinates most at night. However, her activities are just disturbing rather than aggressive.

    I agree with Canary in relation to keeping safe. I myself sometimes take to another room and have had a meds review done a couple of times. It's a tough issue to deal with.

    A couple of weeks ago my wife woke me by thrashing about in the bed. When I asked her is she was OK she kept thrashing but turned to me and said "It's a swimming day Pete, use it or lose it.". After calming her down I left her to sleep and retreated to another room.

    FWIW, I follow some of the tips from this AS Factsheet https://www.alzheimers.org.uk/sites/default/files/migrate/downloads/changes_in_behaviour.pdf
     
  14. LynneMcV

    LynneMcV Volunteer Moderator

    May 9, 2012
    3,008
    south-east London
    My husband, who was the kindest, sweetest of characters, did go on to develop episodes of violence and psychosis as the disease progressed.

    After the first awful episode, which ended up with him being in a secure unit for a couple of months, he was placed under the care of the Community Mental Health Team and they were key to keeping on top of these episodes and in instructing our GP of the appropriate medication needed. I found that, until the very end stages, using a mild sedative or an anti-psychotic medication as and when needed, was enough to help my husband live peacefully for the most part.

    Much of his aggression, when it arose, came out of fear - usually through a belief that he or others were in danger of fighting for their lives. Sometimes he would have nightmares which he would bring into his waking state.

    As we never knew quite when these episodes would occur, day or night, after the first time it happened I fitted locks to my son and daughter's bedrooms so that there would be a safe place for us all to go if need be. I also got into the habit of keeping my mobile phone close to hand. The locked doors were used just a few times over the years - but fortunately we rarely reached that point because my husband was usually compliant in taking the medication from me once I saw the signs of paranoia starting to emerge.

    Please make sure that your husband's Memory Clinic consultant and GP are aware of these changes so that they can help.
     

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