Short relationship - then dementia, anyone else like this?

Discussion in 'I have a partner with dementia' started by maryjoan, Dec 14, 2018.

  1. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,354
    Female
    South of the Border
    I read the forum avidly, and have learnt so much - but yet, I feel very alone.

    Is there anyone out there who is caring for 24/7, their partner/spouse, who has developed dementia after only a short relationship?

    I have been with my OH for 8 years - looking back we had about 3 good years before the start of his dementia. So many people on here are looking back over much longer relationships, with good memories, and love. I wonder if 3 years is enough to help me see this thing through till one of us dies?
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,721
    Kent
    I know there are a lot of carers on TP who are in second marriages/relationships @maryjoan but am not sure of the length of any. I also know there have been disagreements between carers and adult step children from both sides.

    I hope someone will be able to offer to share similar experiences with you. Being a primary carer for a person with dementia is a tough and lonely life in most relationships but I suppose it`s a little easier for couples who have grown together.
     
  3. Beate

    Beate Registered User

    May 21, 2014
    11,727
    Female
    London
    I was with OH for 15 years. He was diagnosed after 9 of those, so the good years outweighed the bad, unless you want to count the caring years in dog years - then not so much!

    It was enough for me but I can also tell you that I was relieved when the end came. I wanted him back but not like he was at the end, and that was never going to happen. The worse it gets, the more difficult it is to hold on to good memories, as they seem so far away. In that respect I don't think it matters how long you've been with someone, but how much you want to be there for them - in good times and in bad.
     
  4. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    6,009
    Male
    Bristol
    Sorry to read of your struggles Maryjoan. I have only been with C for about 11 years and we were friends for a year before that. She has had vascular dementia for 7 years, so that was only really about 4 good years. We've muddled through after that, and I'll always treasure our few days out to Devon in the summer of 2015, the last really good times together.
    I can't really answer your question though, it is hard going when you have only a few good memories to cling to and I think you are a bit more isolated than we are.
     
  5. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    5,015
    N Ireland
    My time line has been similar to Beate. So far I have been with my wife for 15 years, married for 11.

    It's hard to put a start date on the dementia symptoms as my wife suffered with depression and anxiety from before she met me. I thought I could help her resolve her issues and was always flummoxed by the fact that I was getting nowhere - then came the dementia diagnosis.

    I have since read that the brain changes created by dementia can be a physical cause of depression and the brain changes can be happening 10-20 years before dementia symptoms can be seen. All in all, I now think my wife had the vascular damage and Alzheimer's disease when I met her.

    However, the bottom line with me is that dealing with the dementia is physically tiring and, at times, emotionally draining and exceedingly stressful but we are still managing to have good days and make happy memories that I can recall and my wife manages to enjoy again when I relate them to her(even though her blank expression tells me she isn't actually remembering, just enjoying the way I tell the tales).

    I sincerely hope that this will be enough to sustain me when she enters the later stages. It's lucky that only I remember the bad days as I am the one with the broad shoulders - my wife would be devastated to be aware of the bad times.
     
  6. sarahsea

    sarahsea Registered User

    Dec 19, 2017
    63
    I've often wondered the same - would I be able to endure more if I'd been with my husband 30+ years, if we had children, grandchildren, more shared memories? I don't know, but I do feel that I was free a relatively short period of time ago and I long for those days.
    I met OH 9 years ago. We had an on-off relationship for 2 years, mainly due to his mood swings, depression and tendency to go off and sleep with other women. But things settled, we committed to each other and moved in together 7 years ago. We married 4 years ago and within 6 months of the marriage the dementia started to rear its ugly head. The last 3 and a half years have been horrible. He was diagnosed with early-onset Alzheimer's a year ago. We're both now 61. Neither of us have children and 6 years ago we moved 300 miles across the country, so we have few friends or other support nearby.

    Having read what I've just written, I would say that a short relationship does create specific difficulties when dealing with dementia and for me it's not enough to keep me in this caring role. I do not recognise the man I live with. He's not my husband. But how can I leave? I've had a carer's assessment and was told by Social Services that they can't offer any help for my husband because I do everything for him. They will only step in if I leave. But they are going to send me a payment of £400, which I'm supposed to use to do things which I can't do because of my caring role. I suggested that I could use it to buy myself a one-way airline ticket and the social worker seemed to think that was a good idea.

    The truth is, I'm stuck. I don't want to spend every day caring for the man who used to be my husband. We have no shared memories and no future. I feel like I'm just waiting for the disease to progress to a stage when he will need full time care, but that could be a very long time and I don't want to go down with the ship. Since the diagnosis, various professionals - GP, consultant psychiatrist, CPNs have routinely asked my husband if he ever has any thoughts of harming himself or others. He always cheerfully replies "no". He's happy and content and I do everything for him. Why don't the professionals ask me the same question?

    My husband didn't ask for this horrible disease and it's not his fault, but it doesn't seem right that we both lose our lives in the process.
     
  7. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,354
    Female
    South of the Border
    You and I are in the same boat other than the fact that OH and I are not even married, don't own our house, and have no security etc.
    The name of my boat is TITANIC II or I am so lonely sometimes, I feel as though it should be called the MARIE CELESTE.
    How can we possibly go on like this? It's not a life, there is no affection, concern, empathy, I am a housekeeper - Because he has this flaming stoma that he and I both detest (post dementia) I am dealing with issues that I find repugnant, and we have not even reached the incontinent stage of his illness yet......

    Oh well, by the way what are CPN's ?
     
  8. sarahsea

    sarahsea Registered User

    Dec 19, 2017
    63
    Community Psychiatric Nurses. My husband is apparently "under their care". Nice people and they do memory tests etc, but no practical help. I agree about the loneliness. Before I met my husband I lived alone for 15 years and was never lonely. This is very different - I can't talk to friends on the phone, he wants to be with me all the time and it's the little things that get you down, like having to remember to put my phone on mute every evening so friends can text without him knowing. If he hears the phone beep he wants to know who I'm talking to. That isn't a problem except I will have to spend the rest of the evening describing someone he can't remember even though she's visited us 3 times this year. I have 2 very good friends who I've known over 40 years and they regular check how I am with texts and emails, so in that respect I'm very lucky. They both live in different cities over 300 miles from me, but visit when they can. For that, I'm very grateful, but I know they think I should leave my husband and let adult social care look after him. Impossible for practical and ethical reasons, so I suppose dementia will kill us both in the end, although in different ways.
    The lack of real conversation is a difficult one for me. On the odd occasion I do get out without him I find myself rambling on to complete strangers...or staying in and writing long posts on forums!
     
  9. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,354
    Female
    South of the Border
    Are you sure that you are not me? This is exactly how I am - I said to my eldest son last week, that I spend so long alone ( but not alone) that when I come across another human being, I simply talk them to death! I also have 2 very good friends, who live in this village, and call by every week or so, on spec just for half an hour, to see I am OK.
    We have both been married - he has two children, I have four - two fairly local - they help as much as they can - but his children are useless - I feel abandoned by his family.
    Your last 2 sentences are me, I am still shaking my head and wondering if you are me??;);):):):D
     
  10. margherita

    margherita Registered User

    May 30, 2017
    2,425
    Female
    Italy, Milan and Acqui Terme
    Thanks, all of you for your admirable sincerity.
    My situation is similar to yours.
    I feel less lonely tonight.
     
  11. sarahsea

    sarahsea Registered User

    Dec 19, 2017
    63
    @maryjoan Yes, you could well be me. Or I could be you. Fact is I don't know who I am any more. My friends say they don't recognise me now and that I always used to be happy and smiling. Bit of an exaggeration I suppose, but I know what they mean.

    The lack of meaningful conversation is a killer and led me to have an interesting debate about Brexit earlier this week with a complete stranger who was using the self service till next to me in the supermarket. It was invigorating (a word I don't normally associate with self service tills) and I enjoyed it, despite the attention seeking "unexpected item in bagging area" sounding out every few minutes.

    Last week I chatted to someone on the street about Yorkshire tea bags. I don't often get out alone, but when I do I always seem to find a stranger to talk to. So far, I don't think people are crossing the street to avoid me, but it will come.

    Let me know if you're thinking of digging an escape tunnel, I'm more than willing to help!
     
  12. Guzelle

    Guzelle Registered User

    Aug 27, 2016
    395
    Sheffield
    I’ll join you. It’s so lonely I feel the same when I told him his cousin is moving house he saidI don’t know her do I? I have to explain everything I say.
     
  13. AliceA

    AliceA Registered User

    May 27, 2016
    2,465
    I do feel there are extra or rather different problems when with a shorter relationship.
    Longer ones have different ones perhaps.
    Whatever, meaningful fulfilling coversations get rarer. We both were in groups with lively debates, we met and shared with thinkers.
    Now we are confined to a village with normal escape routes cut off, I too look for conversations, the plumber is quite good! One volunteer driver is the image on a notorious politician but with saner views. Irish so we have lively talks. Deliveries come with varying words of cheer. One told me all his woes, so made mine seem more manageable. So two way cheer.
    Friends are thinning fast, age and illness, unable to travel to visit and I unable too.
     

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