Hello, I was wondering if anyone could give me any tips about living alone with ms. My dad is a sufferer and I’m his daughter and carer. We have tackled a lot of his mobility problems by having extra disability seats and frames around the house which he had found helpful but I still manage the bulk of the cooking and cleaning. My concern is I’ll be moving out to go to university in a couple of months and so he’ll have to learn to manage everyday chores himself. He’ll also be alone most of the time and so I’m concerned this will affect his depression. He can’t work or drive anymore and so he never leaves the house except for a coffee with neighbours every once in a while. I’m not sure how best I can help him or how to prepare the house before I leave. Any general advice would be appreciated as my dads quite stubborn and doesn’t tend to ask for help unless in a real emergency. I try and find ways to make his life easier but I think outside advice of people who understand dealing with ms symptoms would be helpful.
I suspect that when you say your dad is stubborn and doesn’t like to ask for help, what you mean is that he doesn’t like being helped by anyone but you! If that is the case, and please do forgive me if I’m wide of the mark, then your job, and his, is to prepare him to get the help he needs from other sources. In other words, establish a network of care and support provided by people who are not you. Your local adult social services will assess his needs if he asks them. If he has money he’ll have to pay for the carers himself, If he doesn’t he should get it paid for. I think the key thing here is for him to live as an independent adult supported as needed, and for you to be free to live as the independent adult that you deserve to be, with all your options open and your life ahead of you. Invalids can be very self-centred, particularly if they are down, grumpy and depressed. So it might not be easy to do. Then again, he might be keen to do what’s best for you, as any father should. . I hope so. This is important for you both.Good luck.
p.s. I’ve been that grumpy, self-centred invalid myself, which is why I feel entitled to speak about it!
pps I’m not suggesting you abandon your dad - of course I’me not. You’re clearly a lovely and loving daughter, and of cxourse you will want to help him out from time to time with shopping or ocmpany or whatever: my point is that the day to day personal care and household tasks like cleaning and feeding your dad - the relentless daily grind - needs to be covered by people other than you, so that you can move on to the next phase of your life without being weighed down by his troubles.
Agree with everything @alison100 said. I’m only posting to add, if he’s online then get him signed up on here. Its an excellent resource with lots of like minded folks. If he isn’t online then maybe it’s time for a new adventure and he can learn a new skill with a new account on here.
I live alone with my MS.
My boy moved in with me some months ago, but I’m sorry to say the only help I get from him is driving me to the grocery store…
My washer and dryer are in the cellar, and I have trouble with steps, so I only do laundry every 2 weeks or so. I stocked up on extra underwear, comfortable pants, and baggy shirts so I don’t have to deal with the wash very often. The clothes I wear around the house are soft enough that I can wear them to bed without changing, if necessary. I keep nonperishable foods and my most-frequently used pans within reach in the kitchen. Sometimes they cover the counters and table, but who cares? It saves me a lot of unnecessary effort. I also keep a supply of disposable plates and cutlery for the times when I can’t wash dishes (which I limit to every 2-3 days at the best of times).
I clean the tub when I’m in it. About 15 minutes before I shower, I spray cleaner around the tub, then after I climb in there I use either a long-handled scrubber or my feet and a rough sponge to go over everything. For someone more unsteady on their feet, I’d recommend sitting on the edge of the tub or a waterproof stool to do this, because those cleaners can be quite slippery. When I start getting tired, I stop, whether the tub’s clean or not. I only clean the toilet and sink when I start seeing visible dirt on them. I haven’t cleaned my windows in years.
I keep a stack of extra blankets, sheets, and “pee pads” by the bed to be ready for when I need them. My nightstand always holds a clock, easy-to-use lamp, a flashlight, several books, daily medicine, a bottle of water, and snacks. I have extra blankets and pillows beside the couch. Extra pants and underwear in the bathroom. I wear shoes that I can slide into and only wear socks in cold weather.
A lot depends on how bad your father really is right now. Have you been doing the cooking and cleaning just because you were there and wanted to help, or were you doing it because he can’t?
If he’s still able to get around by himself inside the house, consider a variety of tools like those grabby things to reach something that’s fallen on the floor, assistive devices for putting on shoes and socks, leg lifters. Make sure the pantry and fridge are stocked with easy-to-fix foods that are within his reach. I rely a lot on canned stews and microwavable meals. Install grab bars at the toilet and shower. Make sure he has a combination of canes, walking sticks, and/or rollators (I’m assuming he’s not in a wheelchair) even if he doesn’t currently use them.
Get him a cell phone and make sure he knows how to use it and can carry it around with him. Get him used to a computer. Make sure he knows how to order groceries to be delivered and to do his banking online.
Depending on his income, you might want to find someone to come in and clean once a week and maybe wash dishes and laundry. If not, let him know that it’s okay to have dust and cobwebs. The important thing is to prevent bugs and rodents, so if he can’t take the trash out, could you make arrangements with a neighbor to help with that?
Convince him to find new hobbies, whether that’s reading, shopping on Ebay, doing crossword puzzles, or playing computer games. There are dozens of things one can do, even with mobility issues. He can read the news online, watch funny or educational videos, and join forums with like-minded people.
If you both have computers, get a program like Skype or Telegram (my preference) so that the two of you can chat in real time while you’re away. My mother and I check in with each other at 9 am every day, then we send notes to each other at random intervals to just stay involved in each other’s lives. If you want more distance from your father, you could set up a time period that suits your routine, maybe once a week at a particular time.
And then go off to university knowing that you’ve done your best and that your top priority must now be your education!
what a lovely daughter you are thinking so much of your dad.
May i make a suggestion? Ring your local adult social services in your area and ask for an assessment for him. from this they can arrange a care team to come (if he is below the savings rate which i think is about 23,500) if he is above then perhaps you could organise someone to come in each day and just make sure he is ok.
My social care worker put in place meals on wheels for me and arranged for several care companies to visit me and i could choose. i have to pay as i am above the savings threshold.
also a CLEANER. i have a cleaner she does all my washing, and ironing and changes my bed.
The trouble is Nic the more you do for him the more he doesn’t do for himself.
Sit down with him and talk to him and ask him WHAT he would like.
Its amazing how they survive believe me. I am living on my own in sheltered independant and the only thing i struggle with to be honest is hospital appointments. finding someone to take me. i have an electric wheelchair, so my cleaner cant do it as she cant lift it into the car (she would if she could). My daughter takes me occasionally when she can. but appointments is the worse.
also SHOPPING. so i do it all on line, i am a master at that.
so you need to make sure your dad can do all that.
remember he can do a lot more for himself then he wants too sometimes we just get so used to someone doing it for us we forget.
make sure he has a rollator with a seat inside the house.
good luck but i would ring adult social care and get their advise ok. no shame in it. not at all. xxxxx good luck at uni. (dont forget you can face time your dad or skype. xx
You’ve had excellent advise so I won’t try to add to it. I simply wanted to say well done you for all you have done and continue to do in helping your Dad manage his MS.
What a thoughtful daughter. Your Dad must be proud of you getting into university and you need to go onto the next stage of your life without worrying about your Dad too much.
Lots of good advice already.
My top tips are.
A cleaner who can clean, change sheets, do odd jobs etc.
Online food shopping. Think £40 minimum for delivery. If you use one of the big shops they save your favourites. If your Dad can’t order then you could order for him.
An Occupational therapist can assess your Dad for aids in the house. Ask MS nurse for referral.
Hope you can work something out.
More than likely depends on the individual though I’m more than sure it’s possible. Me on the other hand, with or without MS I would find it lonely as I currently live with my best friend and have done for the last 5 years. Also helps if you have a good support network of friends and family nearby. Living in a smart home is also a great advantage.