Caring while in work?

Discussion in 'ARCHIVE FORUM: Support discussions' started by muse, Jun 4, 2008.

  1. muse

    muse Registered User

    May 27, 2008
    599
    Cambridge
    Hi

    I'm very aware that I'm new to this forum, and that some of the questions I face now may have been asked - and answered - many times before.

    I'm 21 years younger than my husband (Philip, 75), who's been diagnosed with vascular dementia and possibly AD. Compared to what I've been reading on TP he's at a relatively early stage. I'm working full time and he's still able to perform a few chores in the home. He's never put himself in danger (although he has thrown away a few things I'd rather have kept, which put him in danger for a split second when I found out :( - but they're only things). He has better and worse days, and also some physical health problems. I take days/half-days off whenever he needs to go to an appointment or needs my assistance.

    My worry is the next stage. It looks pretty inevitable that the time will come when he'll need some care, then more care, then a lot of care. My own inclination at this point, and the advice I've had from friends (with AD experience, not just well-meaning people who don't have a clue)is that I shouldn't give up my life completely to become a full-time carer. If I do, I give up my present (personal achievement, social contacts) and my future (no chance at my age to re-enter the job market, vastly reduced pension for the years I will - if things take their natural course - spend on my own).

    Is there anyone out there with experience of keeping their job for as long as possible, using outside help, whatever available?

    Best wishes

    Kathy
     
  2. citybythesea

    citybythesea Registered User

    Mar 23, 2008
    632
    coast of texas
    Welcome to TP! Don't have experience with what you are talking of but there are many here who have.

    I can say coming from the carers view keep your day job as long as possible! It is emotionally hard to be cut-off from the world and to do it longer than need be I don't recommend. They were very correct in their advice.

    I'm sure soon that you will have others giving you more specific advice. Good luck!


    HUGS

    Nancy
     
  3. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Kathy

    Just wanted to welcome you to the forum.

    I can't really advise, because John and I were both retired when he was diagnosed.

    I do know I found it very hard to cope in the last years before going into care, I ceratinly wouldn't have managed it with a job as well. Though we do have some memers who have managed it.

    In your position, I wouldn't make the decision yet. Who knows what will happen? Everyone with dementia is different, and the disease progresses at a different rate in different people.

    I'd think, carry on working for as long as possible, and be prepared either to give up work or to buy in help if necessary. I see your point about not giving up your own life, but you may find that it's inevitable in the long run.

    Just my view, of course.
     
  4. Chrissyan

    Chrissyan Registered User

    Aug 9, 2007
    570
    N E England
    H, welcome to T/P. :) I am sorry to hear about your husband. My situation is not the same as yours but it does have similar elements. My Dad is widowed, has VAD and still lives alone while I work 30 hours. You know your own husband, trust your own judgement on how safe he is. I believe you should keep working as long as possible & keep your own sanity.

    Get him used to things while he is the earlier stages ie: a carer popping in at lunchtime to fix his lunch (they don't have to be described as a carer to him) This hopefully,with this unpredictable disease, will make it easier for him to accept carers for more hours later down the line. Make sure you have a Power of Attorney sorted out.
     
  5. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #5 Margarita, Jun 4, 2008
    Last edited: Jun 4, 2008
    Hi Kathy



    About the reduced pension

    Home Responsibilities Protection (HRP) http://www.direct.gov.uk/en/CaringForSomeone/MoneyMatters/DG_10038111 .

    You can read up about it now , but I would also agree keep your job for as long as you can , while when the time come . Get social worker to set up a good community care plan .

    My mother was wondering around at night time , getting lost in the street during the day . so I found it very hard keeping down a Job.

    but now mum mobility got worse over the years wondering in street stop which may of been due to AZ late stage medication & she does not wake during the night. So I am going back to work part time , not so much because of the Money more so like your friends say
    as I miss connecting with people.

    So SW going to up my care plan around my working hours so someone will look after my mother while I am at work .

    I found what nearly drove me insane was getting the support from social services as it all progressed.
     
  6. muse

    muse Registered User

    May 27, 2008
    599
    Cambridge
    Thanks everybody for your replies.

    Yes, this Power of Attorney thing keeps popping up. I've taken some advice on it, but I'm not clear on its benefits. Most of our assets are held jointly. To put it in place we need somebody to certify that Philip "understands" and it's recommended that there is another party to it, another attorney (our son is 19, hardly in a position to take on that kind of responsibility?) I gather that this is a document of about 25 pages. Do I really need to put Philip through "understanding" all this, or will it take care of itself?

    Love

    Kathy
     
  7. lesmisralbles

    lesmisralbles Account Closed

    Nov 23, 2007
    5,543
    Hi Kathy
    about giving up work.
    Ron is now 84, I am 60.
    I gave up work, it became unsafe to leave Ron on his own. I do not regret it, I only regret the loss of wages:)
    Barb & Ron XX
     
  8. muse

    muse Registered User

    May 27, 2008
    599
    Cambridge
    Just to see that there are others with big age gaps is so comforting. I was made to feel like a bit of a freak when I married him (21 years?). At that time, we didn't feel a gap at all. Thank you.
     
  9. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Kathy, the Power of Attorney will not "take care of itself", but I believe there is now a new term and a slightly different form, but you must get it sorted while there is still time.

    I know it is yet another worry on top of everything else but it needs sorting. I am sure someone will tell you what the new form is about, and where to get it. The Court of Protection is probably the place to look on the net. Or it might be worth consulting a local solicitor, a small firm won't charge too much for doing it for you.

    Regards

    Margaret
     
  10. gigi

    gigi Registered User

    Nov 16, 2007
    7,788
    East Midlands
    Hello Kathy,

    Welcome to TP......:)

    I could have written that post myself acouple of years ago!

    I'm 54, my husband is 71..he was diagnosed with Vascular dementia and AD 2 years ago.

    Like you I was still working..like you I worried about the future..and my own options.
    It's very sensible to consider all aspects..as no two situations are the same...even if they have similar issues.

    I carried on working until I felt my husband was no longer safe to be left alone. Then I reached a point when, although I enjoyed my work, I felt I could no longer give it the attention I should..I had gradually reduced my hours over the years to spend more time at home. I took early retirement at the beginning of this year.
    For me, that was the right time to do it, and the right thing to do.
    As things have worked out, it's as well I did as my husband's condition has deteriorated this year..in the last 3 months, really.
    A lot depends on your employer,the flexibility of your job, the support in place for your husband..and your own feelings!

    I suppose it was a big decision and a huge step to take..but it didn't really feel like that..and still doesn't.
    For me it was the right thing to do..and I have no regrets..

    It's interesting as your post has made me remember that i felt just like you about the future..now I realise that the future I was worrying about is actually here..:)
    I'd advise you to see a solicitor about EPA..and don't worry about your husband understanding..at the time we took ours out I just explained that it was sensible as I looked after the finances anyway..and he signed.

    Hope this helps..I've waffled on a bit.
    Feel free to PM me..or if you have separate issues or concerns there's always a friend here on TP.

    Love gigi xx
     
  11. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Kathy

    welcome here.

    We had a smaller gap - 7 years, and I was around 44 when Jan began showing symptoms.

    I was very fortunate in my employer - whose Dad had dementia, so he understood - and was able to gradually wind down the amount I did, and then, after Jan went into care, wind back up a bit.

    It is all about priorities and deciding just what is the priority - the present, the future, onesself, the person for whom one is caring etc. Nobody ever said that was simple because there is no black and white 'right' solution.

    There will always be doubts.

    I found I could only focus on two things - the present, and Jan. So I did that, and decided to look after the rest as it happened.

    For me, it worked, inasmuch as anything works in a world of dementia. I know I did my best for Jan, though I know it could never be enough.

    The issues of what to do after, social networks, career kind of paled when I saw how badly Jan was mauled by the dementia.

    At the time, like you, I was devastated even to think about them - so I didn't.

    In our case, an unfortunate stay at an assessment ward hastened Jan's situation, and it was clear that, while she walked in quite well, of her own volition, she could not leave that way, and was unable even to walk on her discharge to her home.

    Each person has to make their own call and the only judge can be the person themselves and how they feel inside.
     
  12. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Kathy, John and I were in the same position, everything held jointly. We were advised to take out PoA, and I was so glad we did. We each made one in favour of the other, so that John did not feel he was giving anything up. And yes, it is a good idea to have a second named person, in case you get run over by a bus! Your son would not have to be involved as long as you were capable.

    I was glad I had done it, because a couple of years ago I realised that I probably wasn't going to be able to cope indefinitely, so I went to a financial advisor and explained the situation. He sorted out our funds (still in joint names)so that I would be able to draw high income if it should be needed. With PoA I was able to do this without upsetting John.

    A good job I did. When it was decided John had to go into care, I rang the IFA and he came round that evening with the papers to sign. Saved an awful lot of worry!
     
  13. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    787
    Buckinghamshire
    Ditto

    Dear Kathy,
    Your situation seems to mirror ours, and you describe it in your post in a much more concise way than I ever did ...... so many aspects to consider, and never a perfect solution!

    My husband is 78, I am 21 years younger (I, too, remember the cutting remarks, even one anonymous letter, when we decided to get married) - never regretted the decision for a moment!

    My husband's problems started soon after he retired, but he was not diagnosed until 8 years ago. With the help of Aricept, he continued to cope reasonably well, although episodes of getting lost etc. gave increasing concern. The hardest decisions were disabling his car (he had been driving since he was 17!), locking the garden gate to keep him safe, and the first admission into respite.

    About 4 1/2 years ago, my work was being affected because I was constantly trying to track him down, driving home to check on him (he was no longer able to use the phone). I reduced my hours and considered taking early retirement. However, I was far from pensionable age, and like you, I was reluctant to give up a job I love, knowing I would never get back into a similar position at my age. Everyone advised me against giving up, including Social Services, who said they'd be able to help. :rolleyes:

    There were meetings, forms to be filled, phone calls made - followed by many weeks and months of silence. It was incredibly stressful, as there was so little communication / action. Nine months later, I almost 'lost the plot', changed from being nice and patient to issuing an ultimatum: I either had a workable care plan in place by the end of August, with input after I leave for work in the morning and again at lunchtime, or I would have to quit work and do the caring myself.

    This worked, led to Direct Payments which are worth the admin time they take up, and we kept going for a further 12 months, when my husband was taken off Aricept. When things went downhill fast, I was once again tempted to give up work, as I could hardly cope with less than 4 hours sleep a night, but the deterioration was so fast that I feared I would loose my husband as well as the rest of my life in short succession. I kept going, and I am glad I did: we now have more help, I don't have a social life, but I have work, which makes up for it, and if and when the inevitable separation does come, I will at least have something to get up for in the morning ......

    It isn't easy, and I feel guilty every time something goes wrong when I am not here. But I still think that my husband has more stimulation with a succession of different carers throughout the day, than he would have if I was here 24/7. When communication deteriorates, it becomes such hard work to be bubbly, bouncy, and enthusiastic.

    Kathy, I have rambled while I sit by hubby's bedside, and I have to stress that ours is just one story. You have already read a lot of other examples, and in the end you have to weigh up your own priorities and make your own compromises.

    You are in good company here! Best wishes.

    PS Re. POA: We drew ours up and added both daughters as signatories - this covers almost all eventualities, and my husband did not feel singled out, as it 'worked' (obviously never will :() both ways. Solicitors will talk you through it and should understand the situation. The important thing is that your husband is still able to sign it ..... we had to have several attempts, which was very stressful, both for my husband who was aware he was failing, and also for myself and the witness, who felt so sad for him and his obvious struggle.
     

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