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Discussion in 'I have a partner with dementia' started by maryjoan, Oct 15, 2019.
Thank you - I’m very emotional after visiting Dad today - I appreciated your post
actually I’m in awe of those including yourself who care for their PWD at home. That’s the toughest thing to deal with. When I used to have Dad here for respite care I was alert 24/7 &found him wandering around at all times of the day & night- having to hide the house keys incase he got out. So I’m in full admiration of those whose PWD is at home being cared for. As for me I just bumble through life lurching from one drama to another it seems.
This Christmas I’m going to ask Santa for a dose of boring normality! Fingers crossedxx
Perhaps we should make that a bulk order for us all, and get the request to Santa in early
Normality....... Never boring; often longed for; very rarely seen.
That wandering thing must be awful - I don't have that (yet!), he sticks to me like glue, won't go to bed unless I do and would get up at the same time unless I can persuade him to 'have a lie in'.
You have been given an very tough load having two parents with dementia and I totally agree with your comment that it’s like having a toddler or a baby only in an adults body...and their needs are very similar. However even within your current circumstances I think you do need to consider your own wellbeing in the mix..difficult though that is. That could be in little things such as taking an hour or two to yourself rather than dealing with your Mums bills or correspondence right away or larger ones such as considering whether your life might be made easier and the load more manageable if your Mum was also in a care home. Managing a care package from a distance must be incredibly stressful. Managing the care home is of course also necessary but perhaps better than worrying about your Mum being at home alone?
However you sound like a very strong competent woman and you don’t have to justify anything. Perhaps you have already considered other options and have good reasons not to look at residential care for Mum right now. We all have to do what we think is right and you are doing an exceptional job!
I just know that it’s easy to feel that there are no other options and to think your own needs don’t matter and only the PWD’S needs count. I like to challenge that wherever I see it. I have watched my sister make herself physically ill through doing too much for our Mum and Dad and came close to a major bout of depression myself so I worry when I read about carers giving up more and more of themselves...without questioning it or considering alternatives that take their own needs into consideration which is something we all need to do if we are to sustain caring in the long term.
There’s something about feeling as though you have made a choice to do something though that makes a difference and it sounds like you have done that and are comfortable with the choices you have made so don’t allow anything I or anyone else posts to make you doubt that! My intention was to help not to hinder.
Wishing you the strength to always do what you think is right.
I had a bright idea to take early retirement and give up my ‘proper’ full time stressful job and decided to do temp/contract work through the winters and then travel from May to Sept. 18 months later Mum got her diagnosis. Temp work and Mum’s multiple phone calls to me through the day did not go together very well. Other various appointments along with 2 cataract operations And associated care made it impossible to continue. I have felt I have tried my best to look after Mum during this year but currently await a place for Mum in a Care Home. I really would like to follow at least some of my plans before it is too late. I have had 2 partners who have died unexpectedly before reaching 50 so know in a totally different way how cruel life can be. So selfishly once Mum is settled nearer to me I hold hope that she is safe and well cared for and I can do some travelling although the world tour may have to wait
oh bless you, I’m a total mess at the moment - other life issues have popped up & I’d normally cope but as the saying goes it’s a bit like the straw that broke the camels back!!
a good night sleep- only woke at 2 am !
Totally agree with you that a Care home at some point might be the only option for
Mum. She recently went into a respite care situation Mum wanted to visit Dad & I couldn’t manage her needs in our house - stairs etc. Mums type of dementia means she can come across as high functioning, but is a high falls risk, gets exhausted by the simplest of daily life- ie getting out of bed & becomes extremely confused with exhaustion. So a Care home meant she was well looked after but above the other residents intellectually. Now she’s on memantine her behaviour issues have been resolved to a certain degree that’s now manageable. Mum has carers in 4 times a day & I actually no longer have the worries I had about all aspects of her care. The GP is going to be a pain, but I can get another GP out if required - the reception staff are excellent & aware of the issues. It does help growing up & knowing a lot of them!
As Dads at the end of his life now all I can do is be around for him & provide the comfort of being held. How long it takes the body in this final stage is totally unknown - how long is a piece of string. Dad becomes easily dehydrated & his lower lip swells regularly. The care home are giving him protein drinks, bit like shutting the stable door after the horse has bolted as Dad has lost 6 kg in a month.
So Dads lovely new GP has put him on stronger morphine patches & the liquid oromorph to back it up.
Getting the home to admit what the medical professionals have stated is no longer my concern - an Enquiry by safeguarding is underway. The lovely SW doing this has found Dad as we describe, so I’m no longer fighting the system alone I’m actually standing with others with Dads best interests at heart.
It’s always good to have a balanced view & I appreciate those that give that; it’s not an easy position or popular at times & certainly brings out the defensive in those the advice is meant to help. ( Hands up - that’s me!!) But I totally appreciate your input- you say the same as my own husband & children, & others. This is a no win situation though & I have to be able to live with myself afterwards ... I’m adopted you see & 18 months ago my biological mum passed away. We had known each other for over 20 years but her own family were not as welcoming shall we say - in particular her husband was off at times. So I found myself cut from that family support & grieving on my own. I don’t want to have the regrets I had with my beloved biological Mum so I guess I’m overcompensating!
I’m going to go on a bike ride with my husband today ! Actually it’s going to be a lot shorter than he expects - I haven’t ridden a bike since I backpacked our hefty fell terrier after she decided that she’d had enough ! That’s over 10 years ago!!
so thank you for playing devils advocate - it’s a necessary role but not always a popular one
Sadly I’d now be happy if he was able to wander & be mobile- hindsight means that those precious walks we went on with the dogs are history never to be repeated.
Dementias a cruel disease & I hope my experiences can bring light to another’s journey
Enjoy your bike ride @DesperateofDevon. I started riding again last year after a break of about 10years. It helped my mood a lot. The hills nearly killed me then (actually I pushed the bike up the steepest of them)...they seem flatter this year!
I hope your dad is comfortable at last.
Hills..... oh no nothing but flat cycle path for me ! I might even get OH to drive me down to the cycle path in the van!! Baby steps you know ! I wonder if trainer wheels might be appropriate- or maybe a tricycle???
I fell off my bike a few weeks ago so my daughter told me I needed trainer wheels ...
I’m going for a ride this morning - 2 big hills and a nice flat bit in the middle
my FIL has a recumbent bike , while an acquaintance just bought an electric bike - he’s a keen cyclist & super fit! An electric recumbent bike appeals with a nice comfy padded seat- or is that just a sofa on wheels with a motor attached? Umm ...
I work from home too and I think that is the key - find something that you can do working from home. The motivation is the difficult part, I thought it was because I was "gender challenged" that meant I couldn't multi-task ;-) but maybe you're right, the constant being called away for this, that and the other does distract and make motivation hard. It is worth doing though because it means that you can interact with others and have sane conversations even if it is by telephone, and for that brief moment, you're not a prisoner.
As a younger person (I'm 52, my wife with Alz is 66), I also find that the whole 'state help' is geared towards the expectation that everyone with dementia is retired and on a pension - well that's what it felt like. After I gave up work 4 years ago, there was no way with the CA, PIP etc that I could pay the bills so I set up my own little company. I do websites and membership systems for enthusiasts clubs. I can easily work 40 hours a week at this. Productivity is low (so is the pay, but that's not the point, do it for sanity) because of the call aways and motivational issues, but a few hours here and there, plus she goes to bed early then I get the evening too and it soon mounts up over 7 days. Once you do that ...... you get Working Tax Credit !! Yay - then I could pay the bills!
I worked for about 3 years, whilst still caring for OH at home, with no support from Social Services or GPs. My employers were superb, taking no account of the frequent times being called home or not getting in for 2 hours or so.Whole story is too long to details but, in the end the lack of support from these two sources led to OH being sectioned (he wouldn't eat or drink despite my best efforts) and to me suffering what is known at Carer Breakdown, by the powers that be. Because I didn't have POA for health and welfare, Best Interest Team decision was he needed full time Nursing Care and after a slight hiccup we found a wonderful home where they care for him so well. I am now his wife again, who he is pleased to see and not the nag bag of a useless nurse he used to think I was. Being much younger than OH and still having sizeable mortgage, giving up work and staying in our home weren't something I could achieve. When things turned out as they did I was glad of the job to absorb me for a while each day. However, don't think I don't feel guilt every day, and still daydream of looking after my gorgeous OH full time. I can't advise, but that is my story. Take from it anything that helps
I’m 29 and live with my Nan and Grandad, and am my Nan’s carer, shes been diagnosed with Alzheimer’s for about 6 years and within the last year my Grandads become unable to cope and change his behaviours/routines to do what’s best for Nan and her routine. She can’t be left on her own anymore and it’s very much like being her parent.
Most of the care is by me, but I can’t afford not to work, so my Grandad looks after her on the days I work. It’s so tiring as I’m getting up in the early hours every morning to help Nan get to the bathroom.
Although it’s not restful, going to work does give me respite. However I’m still having to deal with calls to doctors, social services and the care companies so I’m never truly switched off.
Welcome and you are going to be a great asset to our forum!! I've just read your very helpful post on gagging and choking too. Thank you!
What a wonderful grand daughter to do that for your grandparents - I don't think I could have done it when I was your age. Hope you manage to fit in a bit of fun with people your own age sometimes though, caring for a person with Alzheimer's is relentless.
Thanks Red Eyes. Yes very similar - my husband is 83 too. I am very torn as work has been a real escape but like you things are getting harder. My husband was diagnosed 5 years ago. He has deteriorated very slowly which is a very mixed blessing. I feel so guilty because I try and keep my work and other interests going while he is slowly becoming more isolated by the disease and our shared life has evaporated. If I was at home all the time it would not benefit either of us.
I just want to say to all those caring and juggling life and everyone’s post has made me cry and think I’m not the only one going through all that. It helps me understand my situation in some ways are better and some worst but still I’m standing.
I’m approaching my 40 soon and I’ve been caring for my mother for the last 20 years in her own home but since last two years she had a stroke and has had dementia she’s had to move in with me due to needing full time care. I work part time, Have young children to look after too. Husband isn’t in the best of health either and he needs care too. Life isn’t the same anymore I can’t switch off both physically and mentally exhausted.
Work is break for me otherwise I’d have a complete breakdown, my colleagues are in their 60’s and fully understand the pressure of caring for someone with dementia how mentally challenging it can be. Sometimes I wish I could be left on a island with no worries, I don’t know what the future holds but one peace of mind I have is my mother is with me no matter how hard it is.