1. Our next Q&A session is on the topic of Christmas and dementia.This time we want our Q&A to involve our resident experts, you! Share tips and advice on navigating Christmas here in this thread.

    Pop by and post your questions or if you prefer you can email your question to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.
  1. jikkie

    jikkie Registered User

    Aug 23, 2015
    #1 jikkie, Nov 16, 2015
    Last edited: Nov 16, 2015
    My OH is 82, has AD and now Parkinsons. He is ok really, not incontinent, tho plenty of floods in the bathroom (which of course I did, not him), lots of absolutely dotty behaviour. I am not always patient, he drives me nuts frankly, I think mainly because a lot of things are just exacerbations of unpleasant characteristics which have always been there, but coming to the fore. In short, he is a nasty old man.

    I am 63, feel totally trapped. We have two young dogs which keep me sane (or nearly!), but are of course work as well. Long story, but the house is still mortgaged, very little wiggle room to do anything financially. I have just found out my blood pressure is in the sky, and of course I know what the cause is. And it cannot be removed. I am even more resentful... doc tomorrow, and pills no doubt. I have always believed in removing the cause, in order to solve the problem... but that won't be the case here.

    I suppose it's selfish, but feel angry that my health has to be sacrificed. We have atttendance allowance now, so I will be able to have some help with the garden... I do find it depressing when maintenance of house/garden slips... We go out for Sunday lunch once a month, though it's getting a little difficult, and it's not really a social occasion, but at least a change of scenery. He isnt the kind to go to day centres (tho I must enquire if there is one at least). Life is just existence.

    I would love to do a Reggie Perrin, but simply cannot afford it.

    I should add, our daughter lives in UAE, and we have no friends.... (OH saw to that, years ago)
  2. patsy56

    patsy56 Registered User

    Jan 14, 2015
    Fife Scotland
    oh jikkie so sad and so sorry. but welcome to Tp, yes OH is 76 and I am 59, he has Parkinson's which is making him die a little each day. The swallowing. At least we are mortgage free and thanks to a slight inheritance last month I am giving up work to be full time carer. I know that the money will be gone this time next year and I will need to find work again.
  3. jikkie

    jikkie Registered User

    Aug 23, 2015
    I know there are many worse off than me.... that just makes me feel worse! Adds to the guilt about not feeling accepting of my lot.
  4. marionq

    marionq Registered User

    Apr 24, 2013
    Jikkie why should you accept being miserable? I urge you to look at day centres and do everything you can to get him off your hands for at least one day - preferably more. I was breaking down before I got that sorted and it has been a godsend. My husband is a nice man but even so was more than I could deal with. You must not feel others are worse off because the truth is we are all struggling in our own way and at different stages.

    I wish you well.
  5. patsy56

    patsy56 Registered User

    Jan 14, 2015
    Fife Scotland
    Jikkie I joined beca mater has dementia but now understand so much more
  6. Lavender45

    Lavender45 Registered User

    Jun 7, 2015
    Hi Jikkie

    I don't think it matters what stage a person with dementia is at, its hard work and all consuming. Please try not to feel guilty for how you feel. You are most definitely not selfish, you are in a difficult situation and it is having an impact on your own health I think its only natural to feel resentful. I know for certain I would.

    I hope things go ok with your doctor today. It does seem wrong if you finish up on medication through caring, but sadly there seems little choice especially with something like blood pressure.

    Let us know how you've got on today, there's loads of support here.

    Lavender45 x
  7. jikkie

    jikkie Registered User

    Aug 23, 2015
    Well the doctor was very nice, saw the point straightaway. Pills for the bp which he says will probably affect my kidneys. Wanted to send me in the direction of getting an assessment, which I think from OH point of view is premature currently, and I am frightened to death of getting on the radar of social services, as it will lead to losing the house. And gave me some guff to read and consider before seeing him again.... it's about mental health, tho he carefully omitted to give me the first page. LOL.

    Frankly I feel even more resentful now. I am not mentally ill, I am just in a horrendous situation which I estimate will take several years to resolve.
  8. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    OK Jikkie I've condensed what you've said into 4 points (hope you don't mind) so here goes:
    1. I've been on blood pressure tablet for over 15 years abd I've never seen anything about them affecting kidneys, possibly they do or there is a risk but not so far.
    2. Get an assessment ASAP the sooner you get one the more help you may get.
    3. Why would the SS take your house away, if your OH is diagnosed with AZ they'll do anything it takes to keep you in your home.
    4. The "guff" you were given to read may be a way to make you consider how the situation is affecting you and maybe make you think about feel.
    I started a thread today because it's my 60th birthday, do I feel like you, hell YES, my wife is only 62 but I've had to live with her going downhill for over 5 years, will I get any cards or phone calls today, I doubt it but what the hell it's my life and I'm going to make the most of it. It takes time to adjust and I'm not unsympathetic but other than on here you're very much on your own.
  9. jikkie

    jikkie Registered User

    Aug 23, 2015
    fair point about the kidneys, over-reaction...

    the house, well, i have huge debts in my name (long story...), house is still mortgaged, half the equity is not enough for me to rehouse myself. and my own pensions, plus 50% of OH's private pensions would be insufficient to keep going. Whether the house is permanently disregarded after the initial financial assessment seems to be a grey area, and I don't really want to make enquiries of the LA to get to the bottom of that, get on the radar, and get the answer I don't want, and then have it on the record for when the day does finally dawn.

    most would say my OH isnt particularly difficult... hence the guilt etc. I do understand what is going on in my mind, but currently I haven't come up with a solution. I do know that me bucking under the yoke like this does not mean I am mentally ill. It means I want out.

    When he deteriorates to the point where help is clearly needed, then in some ways it will be easier. I know that I will not be a suitable nurse, and I can accept that about myself. It's this interim period that I am finding difficult. Once it's a matter of unavoidable action, finding a CH.... I will do it.

    Perhpas I shouldn't have sounded off on here, there are so many people worse off.

    Cards? Presents? No chance whatsoever, he gave up bothering long before AD came along. Any semblance of manners, at least in my direction, are long gone. That's a bit hard I find.
  10. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    #10 Shedrech, Nov 17, 2015
    Last edited: Nov 17, 2015
    Hi Jikkie
    Please really consider what Kevini and the others have written. Your health should not be sacrificed and the more resentment you feel the worse it will get - a vicious cycle. You are not being selfish - you need to be healthy to keep being a carer AND for your own good.
    Frankly SS/Adult Services do not want to have to step in, they would much rather you kept on caring so will do what it takes to keep your OH at home.
    So contact them - get a full assessment of your OH's needs and a carer's assessment for yourself - from what you have written it is certainly not premature! How can it be if your OH was found to be eligible for Attendance Allowance. (Have you also applied for a reduction in Council Tax?) Seriously, why wait if there's even a remote possibility of getting some support?
    With Kevini, I really don't see that you are at risk of losing the house - unless you breakdown and then ...? ADDED = If you are living in the house, my understanding is that it is disregarded. Any financial assessment is of you OH's finances - if he has over the thresholds and so you would be self-funding for home care, you are fully at liberty to simply tell them that and not divulge any details (that's what I did for dad).
    So best to get support - carer visits to take some of the pressure from you, and day care with transport there and back (sorry if it doesn't 'suit' him, this is for you to have a break) - maybe even consider a cleaner so you don't have some of the domestic chores to deal with.
    Have a read of other threads that show the difference getting support has made - look at marionq's.
    My dad has Az and Parkinson's, he's 81 this year, I'm late 50s - but I know I have a right to a life and as his daughter know he wouldn't want me to sacrifice it for him - I know it's somewhat different when you are caring for a partner, but there are 2 of you in the relationship and you therefore count 50% for definite.
    Apologies if I've come on too strong :)
    PS No need to compare your situation with others' - each is individual: we are all as deserving of support as each other.
    TP is exactly where you can come and sound off any time about anything - keep posting. :)
  11. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    You might feel more comfortable about asking your local Citizens Advice Bureau (CAB) for advice and help. They provide totally confidential, usually very expert help ... the main difficulty is finding a local CAB that's still open and able to offer appointments within a reasonable time.

    CAB can help you both over the care and house issues and may also be able to provide you with personalised budgeting advice so you can see whether staying in the house will be practicable for you on your own.
  12. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    I agree with Also, from what Jikkie's said it looks like it needs someone who can get more of an insight into the situation than should be revealed in public (even on here).
    As jikkie's 63 the house would be disregarded but there is a mortgage, that doesn't mean you can't downsize and use some of your OH's capital in the house to do that but what can and can't be done or be determined to be reasonable needs more disclosure than should be put in the public domain.
    It is possible to get debts written off but this needs professional advice, really jikkie you need to do as Also says and go to the CAB or similar and get some proper informed advice on the best way forward.
    From what you've said it sounds like it's all getting on top of you right now, there we can help, we all worry about the future and where it's all going that's only natural and getting your financial situation sorted is a big part of that so some professional, impartial advice is the next step.
  13. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    North East England
    Jikkie, I can't help over your financial circumstances but would just like to say that everyone's situation is different, and yours is no less important than others' who you feel are 'worse off'. None of us know the whole story about anyone else, and everyone deals with things differently.

    For instance I'm not even my mam's main carer, and don't live with the daily difficulties and frustrations that you and my dad do, yet sometimes I feel totally and utterly overwhelmed, emotionally, by the situation I find myself in, as the daughter of someone with Alzheimer's. Even though I know there are many others who are 'worse off', that doesn't stop me from feeling the way I feel.

    Please do keep posting because you are important, just as important as your OH, including your physical and mental health, and there are many of us who feel the same things that you do.

  14. jikkie

    jikkie Registered User

    Aug 23, 2015
    Thank you all for your posts. Everything you have said is well taken.

    Debts - CAB worse than useless, unfortunately. I was told the house would be repossessed and OH rehoused as he was over 60, but I would be on a park bench - quote. A few years ago now, but it was that "information/advice" that caused me to run assets literally to zero before I stopped paying and got things sorted. A huge irretrievable mistake. For anyone with those kinds of problems, Stepchange are the people. There is a huge gulf between what the law may state, and what actually happens.

    I do agree about the house, I am trying to get back in contact with the guy at Age Connect who was so helpful with the AA application. He may know what happens locally. However, there is insufficient equity to downsize, and any new loan from our lender (who is brilliant) would be hugely less than the current - all the new rules, income etc. I would much prefer to sit tight if at all possible. It's what would happen if I have to sell up, after OH goes into care, that could be the issue. ie, whether the house is permanently disregarded, or only temporarily, while I continue to live in it.

    I will find out what is available day care wise, but I think in the meantime, I just need to make a rule and go out for a couple of hours a day, in addition to walking the dogs. You never know, I may even find a human being to talk to.

    It's interesting that my moans and groans seem to have moved away from the care issues and the joys of living with someone who doesn't communicate except to be contrary or unpleasant, towards matters financial.... clearly it's the basic security of house/home and money that is getting to me as much as the care side.
  15. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    ... the right approach to take, methinks. You've a life to lead that's likely to continue long after your OH goes into care (which he probably will, one of these days) and you need a secure base. Also care's hard enough without living like nomads because the home and income have both vanished.
  16. witsend~1

    witsend~1 Registered User

    Jul 16, 2014
    North Lincolnshire
    Oh Jikkie, I know exactly how you feel. I am in exactly the same situation (OH is a little bit younger) but we are the same age give or take a couple of weeks. I have to work full-time with a mortgage. We get top AA but can't get any care because we live in the middle earth with only hobbits for neighbours (actually about 10 miles from Lincoln) and they have no-one in our village available! I do get help with the cleaning but can't get anyone to turn up regularly for the garden, so like you and thousand of other carers have to do it all. I guess we all become jack of all trades and not a little bit nuts to keep ourselves sane. You have made me smile thank you and big hug xx
  17. dollydee

    dollydee Registered User

    May 9, 2015
    I am in same emotional state

    Jikkie, I wish we lived near each other. I too have two dogs, greyhounds, who whilst calm, clean and loving, do need ones attention. My OH is 72 to my 66, he is still quite pleasant, if oblivious to my feelings of exhaustion and loneliness. And fear and resentment too. We planned to travel and go out a lot in retirement, now I watch my friends setting off, knowing we will never travel again. He has AD, vascular dementia and cancer. We see his oncologist next week to see if he is clear, but he has a permanent colostomy bag, which entails me getting up 3 times a night to check it's not leaking. Our children are mostly unsupportive, one son does visit quite often, but I fear he thinks I make too much of tiredness and stress. I have always been fit and healthy but had a burn out last Monday. Absolutely fell apart. Drama queen according to my daughter. I finally admitted I was unwell, went to GP who sent me to our local hospice, who have an amazing network of groups, councillors, alternative therapies, and day get togethers for both patient and carers. I also enlisted the help of a local group who help with form filling, legal matters, every type of problem, they sorted my attendance allowance form, said I should have had it two years ago. That type of group may be able to advise you finantially. Ask your GP to tell you of all local help, voluntary and community, don't be proud, it's what they do. And don't beat yourself up for being resentful, hating the waste of your own life, I certainly feel that every day. Angry, sad, sorry, but mostly lonely and afraid. My friends are wonderful, but they go home to their own lives. I feel I don't have one. Try to get through each day, it's what we have to do. Wishing you love.
  18. Morganlefay

    Morganlefay Registered User

    May 20, 2014
    I think you are doing really well. I'm grappling and yet my OH is just at the beginning of his dreadful journey, and I lack patience even at this stage. So I hugely admire you.
  19. DesperateOne1

    DesperateOne1 Registered User

    Nov 25, 2015
    Hang in there! There's always hope!
  20. minstrel6

    minstrel6 Registered User

    Nov 25, 2015
    isle of wight
    trapped.You do have friends here on the forum.you're only 63.Life is not over.


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