Hi, I’ve been my husband’s carer for two and a half years; he has Parkinson’s Disease. He has been my carer for the entire eighteen (nearly nineteen) years we’ve been together; I have rheumatoid arthritis and systemic lupus erythematosus. I also suffer from depression, anxiety and social phobia.
It’s hard work, and getting harder. As the GP was wont to say a year or so back, we’re propping each other up. Well, we have to, there’s no-one else to do it!
Hello & welcome Lamewolf
It’s certainly hard work when one person in a family as difficulties. But when there is more than one double the stress.
You both have physical disabilities each accompanied with high levels of pain. Are you both able to manage your pain levels within the confines of your diagnosis.
I always think if one’s pain is managed as well as it can be. It does help towards making the day/tasks a little easier. But as we know managing pain is just the tip of the iceberg. Do either of you manage to get your own space. Me time is so important even if it’s just watching TV in a different room. I do feel for you as you also have your mental health issues. What help if any do you get at the present time.
https://www.carersuk.org/help-and-advice/get-support/online-meetups
Are either of you people who would like to link up with others.
If so have a read at the above link.
Can I ask you ages.
And do you feel your are getting all your are entitled too.
Are you both claiming Attendance Allowance (assuming you are over 65)?
That can be used to pay for domestic help, to reduce the amount of housework you have to do.
Do you have a really streamlined house, tumble dryer, dishwasher?
Have you asked Social Services for a Needs Assessment and a Carers Assessment?
Thank you both for replying. Neither of us gets Attendance Allowance - we do have savings though. However, I have an absolute horror of people coming into my home - we are currently the Support Bubble for an old friend of my husband who lives on his own, and I struggle with having him here, although I’ve known him for 19 years.
I had enough of Social Services when I was married to my first husband, so I have carefully avoided assessments this time around; thus I can choose what I know will work for me, finance it from my PIP money, and know that it can’t summarily be taken away.
We have a washer/dryer, though I try not to tumble dry anything other than bedlinen, as it eats electricity; but we’ve nowhere for a dishwasher to go, even if we wanted one (I can’t cope with the idea of waiting til it’s full to switch it on, if there’s something dirty, it must be washed right away).
My husband is 71, I am 60, but I was retired from work on health grounds when I was 41, having been on sick leave for the whole of the previous two years.
We live in a tiny bungalow, so there’s no “personal space” as such; my husband is very good though, he’ll happily use headphones if he wants to watch a tv programme I dislike, or if he wants to do gaming while I’m trying to study (currently doing an online course “Canine Fear, Anxiety and Aggression”).
My husband’s symptoms are currently well-controlled; he takes Sinemet for his Parkinson’s, among other meds; however my pain levels are through the roof, despite 40mg sustained release morphine twice daily. Unfortunately getting to speak to a GP is like asking to speak with the Dalai Lama currently.
Neither of us are remotely into “support groups” - I did join an online community for lupus when I was first diagnosed with that (2003) but I quickly left, as it was basically just a competitive pity party. I certainly couldn’t do a F2F group, even if I could get to one; (I am not independently mobile) as my fear of other people is too great.
We have no family - there’s just us two.
I have for some years been a Carer with a company providing holiday accommodation for dogs who dislike kennels; they come and stay while their owners have their own holiday. This has of course vanished with the pandemic, leaving me feeling like a spare appendage, as this work makes me feel useful. I adore dogs, and feel comfortable in their company in a way I never have with humans, so I’m missing my canine guests terribly.
Sorry, that was a bit of an essay, wasn’t it?
Maybe it’s time to consider claiming Attendance Allowance for your husband?
As you get PIP, that’s the equivalent of AA for those under pension age. Are you getting highest care AND mobility?
Whilst I understand it might be difficult for you, especially to start with, it’s worth considering getting someone else involved to help. Clearly both of you are restricted in what you can do, but it’s also important to think about what would happen if either of you became ill.
Claiming AA for your husband would give you enough money to be able to afford some domestic help for the most difficult cleaning, like the bath, for example, going shopping and running errands for you.
It would also mean you wouldn’t have to worry about the bill if you used the tumble dryer. Condenser dryers are so much better for your health than drying things inside the house. I have a “Green” condenser dryer, it has different shaped paddles inside and works very efficiently, but has an AA energy rating.
With regard to a dishwasher, you don’t have to wait until it’s full, most have a half wash setting, and a rinse setting. If you haven’t ever used one, they use very little water.
I recently had a smart meter fitted before Christmas. The monitor tells me how much appliances use. Was pleasantly surprised to find my tumble drier doesn’t use nearly as much electric as I thought. There is a green, orange red system. With a kettle dial swings round to red, the tumble dryer moves to the middle of orange, and as the washing dries, gradually moves to green. I’m still careful of course. I don’t dry my woollens in the dryer, even though it has a setting for them…
You properly know much of this content but it might be worth a look.
we do have savings
Every little helps!
I don’t know what part of the country you live. But there should be a equivalent scheme in your area.
Might be useful ?
Are you connected to a dog forum. You have loads of knowledge - maybe sharing it. Would also give you another out let.
Suggestion
Oh goodness,I thought it was just a few weeks ago that I’d posted. I’m really useless at estimating how much time has passed.
Thankfully the dog-siting work has picked up; my next booking is for two dogs staying from 19th to 22nd November; a whippet and a whippet /border collie cross who have stayed several times before.
I finally got referred back to the rheumatologist at the hospital - having been signed off back to just the care of the GP surgery back in 2012 and admonished to “just go away and live with it”. Several of my meds have been increased, including my morphine, and a new one added to combat osteopenia.
My husband also has two new meds, so now he has 9 prescribed items, and I have 10.It’s murder keeping track of them all; thank goodness for Open Office spreadsheets!
I am very concerned that my husband is becoming physically weaker; the other day he went into the loft for something,and was unable to put the ladder up afterwards - it’s one that sort of concertinas into itself and fastens into a clip, then pushes up into the hatch space. He hadn’t enough strength to get it to clip. Luckily his pal was visiting that evening, and he dealt with it,but it’s a worrying development.
I’m trying to encourage him to get the WiiFit out and use it, with mixed success.
I should probably mention we’ve been the pal’s Support Bubble throughout the pandemic, as he lives alone; having him over one evening a week has taken a toll on my nerves, but it can’t be helped.
If you are over 65, you can have Attendance Allowance, if under 65, claim PIP.
Don’t put if off, it’s not charity, it’s part of something we all pay into through taxes etc. so that if you get ill, you get extra help.