I don’t know what to do, I am struggling to walk, to get up from
I’m sitting, I’m needing more help to do many things.
My daughter who get paid to help me as my carer is getting frustrated as I’m asking for her help more and more. She’s still young (23) and wants to do things others her age do so I feel like I’m stopping her although I don’t mean to. Because of my speech problems (I often can’t talk without slurring my words or forget what I’m trying so say so we both get frustrated).
I tried to do some exercises today to help my struggles with walking, getting up from a chair and couldn’t even do that. I tried to do some core exercises as I knew what to do but I really struggled so after a few tries I gave up (which I’m kicking myself for).
I need to ask my ex. to do something for me, he has said just ask him (even write it down or send him an email if my speech is bad that day ) if I need him to do anything but, I don’t feel I can. It’s awful because we still stay in the same house even though we’ve split up as a couple. He said that yes we’ve split up but, nothing else has changed as long as were still living in the same house. (he’ll still do any shopping, any household repairs, mow the lawn etc.).
Should I ask our daughter to ask him on my behalf or send him an email as my handwriting can be very untidy and illegible some days now.
I also needed to talk about all the above to someone so, chose everyone on this forum hoping someone will understand and offer me
some advice.
Hi Jacqueline.
I totally get how you are feeling sweetheart. So it is time to make some changes, as you already know eh?
I’ve had PPMS for 24 years and am practically totally dependent on hubby and carers. I am a full time wheelchair user and use hoists for all transfers. My left hand is very difficult to use as the MS is progressing further. I am doubly incontinent too. Eating is difficult.
So back to you…maybe it’s time to get carers in and have your daughter as a back up. Have you had a care assessment from Social Services? This would result in you being given an amount of hours per week, which is paid for by Direct Payments. I make a contribution of £35 a week. I get 30 hours, plus 2 waking nights a week.
Regarding your ex…I can see how asking him for help, makes you feel uncomfortable. I think a text could be the better way of contacting him.
Maybe you should also ask for an assessment from Wheelchair Services, seeing how your mobility is so bad.
You could also ask for an assessment from an OT. This will look at possible adaptation/equipment to make life easier at home.
Regarding exercises, I really don’t think there is anything there to beat yourself up about and making a start is brilliant. Most chairs are pretty low down (to me anyway) and you can make sit to stand a lot less difficult by selecting a higher chair. Whatever you can manage is an awful lot better than doing nothing.
If your ex has said he is happy to help, then I would take him at his word and communicating by e mail makes sense.
Good advice to get an OT on the case and they should be able to suggest some workable solutions.
Hi Jacqueline
It sounds like you’re in a really complicated situation and hope you can navigate through it.
Living under the same roof as your ex but estranged/ divorced must be very difficult, and yet whilst he is apparently willing to help you, you seem unwilling to ask. If you want professional assistance to be forthcoming, the parameters of your arrangement with your ex need to be simplified or the vagueness could work against you. Black & white.
Once clarified, you need to ask the Adult Social Care Dept at your local county council / unitary authority for a “statutory assessment” (the terminology is important). They need to understand there has been a change in your capabilities or in your care arrangements.
Your daughter’s ability to provide informal (unpaid) care will be scrutinised: Does she work? To what extent is she available to you? If she works, she also has a right to reasonable amounts of unbroken sleep too.
Your ex’s role need to be documented. The way you wrote your account suggests he is willing & able to provide care. You need to change that! For example, if he has a new social life, that may be in conflict with your requirements to care. Likewise, there may be intimacy/ privacy issues with him doing cares now. It sounds rather delicate, that you can be livig in the same house but communicating by text & email.
Any tangible changes in your condition? An OT will evaluate assistive technology that could help your independence, or at least make it easier for one person to help you - lifting, dressing, washing etc.
Can you feed yourself / prepare food? If daughter / ex not around, what happens?
It sounds like you are having a very tough time. If I were in your position I think I would e-mail your ex so that you can clearly convey your thoughts and requirements. You probably both want the best for your daughter. She needs to support you but not to the extent that she resents the impact. I think you, your ex and your daughter should try to discuss how to go forward and try to plan which professional services you might need. It might be useful to discuss options with the doctor/nurse/social services. If you can do this as a team you may find things easier and avoid issues and guilt trips.
I wish you and your family all the best
Mick
Being a daughter and a carer is a difficult job. Maybe a priority should be to think about separating out those roles: pay an outsider to provide the care and let your daughter just be your daughter and turn her focus outside the home as she establishes herself as an independent adult in the world?
Easier said than done, I know. But it might be that her growing impatience is a distress flare: she is uncomfortable with the current arrangement, but maybe doesn’t know how to communicate that, so her discomfort is leaking out, as difficult emotions will, disguised as something else: impatience with your disability. I don’t think it’s your disability that’s the problem: it’s the current caring arrangements. Time for a heart-to-heart with the young woman, I think. If she needs to get back to just being your daughter, and feels guilty about feeling that way (which she shouldn’t, but she might…) I hope you find a way to coax that out of her.
Although the situation is difficult we are willing to work through it, my ex is willing to help me but I find it difficult to ask for a few reasons: I have up until fairly recently managed to do things for myself and I’d find it hard to adjust or accept that
isn’t so easy now.
He works in a shift system which has recently changed to being 12 hrs instead of 8hrs every day he works so he is even more tired than he used to be after a days work. So I don’t want to find more things for him to do on his days off.
I 'm really not sure if I want or need professional assistance yet although it might be needed sooner than I want it so meanwhile I want to keep living as independently as possible.
Our daughter works as my paid carer and she does have as much time as she wants when she isn’t working as my carer, although I don’t think she knew what she was taking on when she applied for the job. Your right about separating the roles of daughter and carer, again because of my speech problems I haven’t talked to her about how she feels being my carer. I actually thought the same last night and considered sending her an email, that way I could tell her what I want and need to and she could reply but maybe that would seem too impersonal relying on technology instead of talking face to face. I’ll consider how I could tell her and receive a reply soon and thank you for telling me what you thought about it.
My ex’s ‘care’ is limited to going shopping for us all as a family and taking me to various appointments such as dentist or doctors. He has always refused to do any more saying he won’t classed as my carer.
He has always had a very short temper, liable to fly into a rage for the slightest reason if something upsets him or he doesn’t agree with but I’ve always known that and thought I could cope with it. He doesn’t get physical, just shouts very loudly but, it has always made me wary and choose my moments before I ask or tell him something. That is why when I am possibly likely to struggle to talk legibly, I just don’t talk as I can see from his expression it’s frustrating him when he can’t understand me. He has said he gets annoyed at himself because he can’t understand me even though it’s no-ones fault… (Now I feel guilty for telling a complete stranger.) That is the main reason I want to use email to tell him something although I haven’t done that yet.
I can still feed myself and prepare some simple foods, if I had to providing I had a chair to rest on when needed, I could cook a family meal but because he sees me struggling, our daughter has been designated the job of all the cooking. She also does all the laundry.
If no-one else is around I wouldn’t starve.
In a way I feel I don’t have a purpose in this house.
Sorry rant over, I felt I had to tell someone and you were the unfortunate one.
Hi Jacqueline
Please don’t apologise! That wasn’t a rant, it was a considered and articulate response. It is indeed tragic that someone who clearly has a good brain is trapped by being sometimes unable to communicate using interactive speech. This horrible disease gets us all in different ways
I don’t think that we (on here) appreciated that your daughter is your paid carer and that it is her job. It would certainly be worth investigating the nature and extent of the role before talking to the authorities. So to clarify: she lives with you? Does that mean you could be summoning her any time, 24/7? This is beyond my experience but as a live-in family member, the authorities could take a view on informal (unpaid) care by a family member v formal care (paid). I do know that part of the assessment relies on an individual’s right to unbroken sleep. To release her from being your paid carer you would need to both find a replacement and for your daughter to find another paid job. Is there someone within the authority (her employer) who you could have a what-if conversation with, without it being official? You certainly wouldn’t be the first family where a family member is either struggling with the workload or has other ideas for a career. Her role as a carer emerged, I imagine, out of her love for you rather than her “calling”. It may be now that the role of being your carer is now bigger than one person can provide, legitimately, and that releasing your daughter from a full-time role may mean there is still a paid part-time role left for her to do alongside another career of her choosing.
Your ex’s role, now you’ve enlarged upon it, does sound much better defined and there’s not really a threat that his role could be misconstrued. That’s one of the limitations of a forum - we only “know” you at arms length.
One thing is for sure: don’t let your pride get in the way of asking for help.
As I will soon (hopefully) be moving to different accommodation (our daughter’s going to move with me when we find somewhere to move to), my ex will not have any say in which professional services I may need and when I do I will discuss it with my daughter.
I have a care manager, (I only found out I had one when I asked my GP something and he told me to ask my care manager. I don’t know what she can or will be able to do for me, she might be able to help me with whatever services I might need in the future. She did come a meeting along with several other professionals (there were 2 Occupational Therapists, a housing manager from the local Council, and a couple of other people to discuss my future move in my house a couple of years ago. My GP is also very helpful and easy to talk to so I’ll keep him in mind too.
Thank you for replying to my post.
I am pleased to hear that your GP is a supportive listener, also that you have a care manager. I think I would be speaking a lot with them explaining how your circumstances and condition are changing. It is also important to consider your daughters situation: for all your professional team know she could be moving away or abroad, so it is vital for everyone that there are options for plan ‘B’
No one wants to need lots of support, but if we do we should try hard to make the creaking system work.
Good luck to you all.
Mick
I really don’t think she’d thought how difficult it could be when she applied for the job, it was more a case of her dad was always ‘on at her’ to get a job so she applied for one she thought she could do and was successful in her application.
I want to see her happy instead of having to deal with my illness and all comes with it. I’ll certainly do all I am able to to make it happen.
If where I live had more room, I certainly would think about using a wheelchair more often but, our house is an old farmworkers cottage and room sizes aren’t big, as it is I rely on my rollator to help me get around. I also don’t want to start to rely on my wheelchair if I can help it. I know it may become a necessity in time but, I want to keep on just using my rollator just now.
I haven’t had a care assessment from Social Services, in fact I didn’t know I could. I don’t want to do that until I move to another house/flat although I could ask my OT what she thinks.
Again I didn’t know there was such a thing as Wheelchair Services till you mentioned it, whether I haven’t researched enough or someone should have told me and hasn’t but, now I know there is such a thing I’ll look in to it.
re. my ex. I think it will have to be email or private message via the downstairs computer as I don’t have a mobile, partly because of the fact that because of where we live, it’s often difficult to get a signal unless I was upstairs or outside, and climbing stairs is very difficult for me now. I can do it, but very slowly holding on to the banister all the way.
I have had an OT come out for an assessment a few years ago but, I may have to ask again.
