My partner, for the past 28 years, was diagnosed with young onset Alzheimer's a year ago, after suffering with MCI from 2011. Looking back, she has had symptoms since 2005 that I can now identify. Her symptoms are atypical but she now seems to be at Middle-Stage/Moderate to Late-Stage/Severe Alzheimer's, although she has never been someone, those of us who know her, would describe as typical! Her symptoms progressed at the start of Autumn and I had to take four months off work to Care for her at home. Her new drugs are a great help and her day care centre staff are excellent, I have made a return to work but she and I would rather be together and make the most of, what remains, of our life together. I am 8 years from State pension age and have been banking on building my works pension to the most I can. I want to stop work now and see her happy for as long as possible but that would be on a much smaller budget without my salary. I want to do the best for her and for use, but what is for the best?
What to do for the best?
- Thread starter GRIM57
- Start date
do you claim attendence allowence for her high rate is £300+ a month also if you dont work or only earn £100 a week you can claim carers allowence also can get 25% off council tax
GRIM, how are things with your employers? From what you say, it seems they could be sympathetic. Stopping work is a drastic step for all sorts of reasons (I know, I've done it!). Could you go part-time, so as to maintain some of your income (and pension!)?
One of the things about dementia is its unpredictability. If your partner is otherwise fit and healthy, she could live for many years yet. It's not for me to advise, but in your shoes I think I would strive for a balance between spending some more time with her, maintaining your career to some level, and importantly, building some time into your life for your own needs and interests.
By the way, congratulations on setting up what sounds to be a super care regime for your partner! That in itself is a great achievement and shows how much you love her.
I gave up work 3 years ago as my OH just would not manage on his own, didnt accept he needed help but was constantly ringing me at work about the weather , road conditions the cat anything really got him distressed, I didnt feel I had any choices. Here we are now him 70 and just gone into a home me 58 thinking how on earth will I manage in my old age. I missed the feeling of self worth , my collegues , the money , and just the me time. Your thoughts are very commendable and I think you need to think it through and get it straight in your own mind. The last three years with my OH we have had holidays abroad and at home, long weekends away, city breaks, all of which on reflection were very trying for me and distressing for him but I just wanted to make the most of our time together. When I say distressing for him, on a one to one with me he was fine but he didn't like going and eating out , didn't do crowds it is so sad really. And of course he doesn't remember any of it . You are making memories for you and taking the time as you feel that is best for her. Please think it through you will have a long time on your own as this pesky AZ moves on. For my OH it has gone on a pace and I am left wondering what to do and how to survive.
Could you cope on 4 days a week with perhaps a Wednesday off? That would be a much quieter day to go out with your partner. You need a break from caring too or you will resent your situation regardless of how much you love your partner. Sometimes thinking you can cope 24 hours a days is because you are not having to do just that; reality of 24 hours caring is a whole new thing.
Onlyme is right. 24/7 is a whole new ball game . remember you are a carer, and it is because you care you are contemplating this huge life change. The Az may move slowly or quickly we just don't know. You need your life too. If I had thought it through, had I known how quickly he would leave me I would have done things so differently. Hindsight hey .
Hi GRIM57
welcome to TP
as you see there's lots of support and information on offer here
I echo what others have said - take your time - look at the options - don't rush into something that you will not be able to undo
especially look into your pension situation - 8 years away from retirement is a key time - if you early retire your pension will be reduced considerably, so get some quotes for what it might be now, in a year's time ... - if you resign but keep your pension paid-up until retirement, what will you live on? and how much will you get at your normal retirement age? - in both cases you will lose the death-in-service cash benefit and widow's pension; I mention this because none of us know what is round the corner
so reducing hours may give you a bit of everything - time with your partner and a salary with the 'death' benefits intact and your pension still accruing to some extent
and definitely make sure you claim every benefit you are entitled to now
it's awful that finances should make such a difference in your plans, but we all have to pay the bills and keep some in reserve for just in case and for YOUR future, however tempting it may be to blow everything and hope for the best
welcome to TP
as you see there's lots of support and information on offer here
I echo what others have said - take your time - look at the options - don't rush into something that you will not be able to undo
especially look into your pension situation - 8 years away from retirement is a key time - if you early retire your pension will be reduced considerably, so get some quotes for what it might be now, in a year's time ... - if you resign but keep your pension paid-up until retirement, what will you live on? and how much will you get at your normal retirement age? - in both cases you will lose the death-in-service cash benefit and widow's pension; I mention this because none of us know what is round the corner
so reducing hours may give you a bit of everything - time with your partner and a salary with the 'death' benefits intact and your pension still accruing to some extent
and definitely make sure you claim every benefit you are entitled to now
it's awful that finances should make such a difference in your plans, but we all have to pay the bills and keep some in reserve for just in case and for YOUR future, however tempting it may be to blow everything and hope for the best
Please think strongly about your plans and please take your time. You are doing the best for her now. We don't know what the future holds. I don't know anything about the demands of your job. Can you do it and still have energy left to spend quality time with your partner? Don't make any hasty decisions please.
Sending support,
Aisling
Thank you Aisling,
I have to admit the winter months have been hard and I haven't been coping with work, the travel to & fro of day care and the short daylight hours. After 'Sundown' is a bad time for her symptoms as she has PCA form of AZ. She loves the West Coast of Scotland and Ireland and wants to move to the Glens of Antrim but I don't know what to do for the best. This disease is so unpredictability! I won't be able to make any hasty decisions, there is too much at stake.
Thank you DMac,
The unpredictability of AZ is so terrible, she has PCA form of AZ and is really fit for her age, until the start of autumn she could out cycle me but I now can see symptoms that may change that but I don't know how soon she will remain mobile; sundown is a big issue and visual perception of 'barriers' or 'Gates' in her way. The unpredictability of the prognosis is making me give her reassurances to help her to cope but of which I have no real certainty myself, with the resulting guilt because that I really don't know!
The drugs also have a double edge; they help but when they stopped working in November and were changed I've started to wonder what symptoms they hide from us.
She is so brave and tenacious, she won't give in to it!
Morning GRIM57
any change in life and making decisions is tricky - and with the dementia in the equation!!
your thoughts of moving sound lovely - maybe this year have a self catering holiday where you are thinking of, this would give you a good idea of how you might cope; you can see how close you may be to support services etc - just remember, though, that moving immediately eats up finances in payment of fees and you will both be in an unfamiliar place with no close friends/family around
I know what you mean about the darkness of winter, I feel as though I'm waking up at the moment with the lighter evenings and some sightings of the sun
is there any transport available in connection with the day centre - when dad was going to day care, there was a mini bus available to pick him up; he did have to pay, but it was well worth it in saving me having to take the time out to drive, and he enjoyed it as there was some independence in him 'going it alone' (there was always a carer on the bus) - even a regular taxi, if your partner would be OK with that
best wishes
any change in life and making decisions is tricky - and with the dementia in the equation!!
your thoughts of moving sound lovely - maybe this year have a self catering holiday where you are thinking of, this would give you a good idea of how you might cope; you can see how close you may be to support services etc - just remember, though, that moving immediately eats up finances in payment of fees and you will both be in an unfamiliar place with no close friends/family around
I know what you mean about the darkness of winter, I feel as though I'm waking up at the moment with the lighter evenings and some sightings of the sun
is there any transport available in connection with the day centre - when dad was going to day care, there was a mini bus available to pick him up; he did have to pay, but it was well worth it in saving me having to take the time out to drive, and he enjoyed it as there was some independence in him 'going it alone' (there was always a carer on the bus) - even a regular taxi, if your partner would be OK with that
best wishes
You are absolutely correct. No hasty decisions. My OH has Sundowning too. Is it possibly to go on short visit to the Glens or Scotland if you have some holiday days to take?
Aisling
I'm so struck both by your strength and your love for your partner. Whatever your decision it sounds like your doing an amazing job. Well done x
