Carer crisis

[texkag]

Is anyone her in a caring role? I care for my wife who has two autoimmune disorders, fibromyalgia and a recently diagnosed blood clot. Right now her knee has little cartilage left in it and she is virtually immobile as a result. Both of my children are teenagers on the autistic spectrum (both high functioning). My life has for decades been almost solely around caring for them all. The problem is that I am burnt out. My wife's knee problem means that I have to do virtually everything now. I only seem to leave the house to shop or taxi them around.

I haven't been able to maintain any special interest; and the truth is that my interest in life generally has diminished. Even if I made the time to leave the house, I struggle to connect with people.

I know that I have to try to get out more, but at fifty-two years of age and still finding being around people strenuous I really don't know what to do. I would appreciate any ideas, strategies and so on.

 

[Mary Terry]

That's a tough spot to be in. I was a caretaker for my grandmother, my parents, grandmother-in-law, and parents-in-law, spanning nearly 20 years. It drained me dry and physically exhausted me because I wanted to do it perfectly when "adequate" would have been, well, adequate. I never felt like I had a second of time just for myself, and a couple of them exhibited no appreciation for my considerable efforts. I burned out, too, and starting demanding that my siblings get involved with our parents because I would no longer take care of their parents for them while they did nothing. I had my own immediate family and home to take care of and a demanding, full time job during those years, yet found myself sacrificing time that should have been devoted to them in order to take care of other people.

Is there anyone who can help you or occasionally give you a break and time for yourself? Does your wife have siblings or other relatives who can help out? There is nothing wrong with asking for help and it can save your sanity. Can you organize household tasks to do them more efficiently and/or assign specific tasks to your children that you have been doing on your own?

Are you eligible for state benefits that provide temporary caretakers to parents/custodians of people on the spectrum? I think it is called respite care or something like that in my home state, and it is a part of Medicaid benefits, I think. Let me know if you're interested in that possibility and I'll see what I can find out. Others here may know about it.

Is your wife eligible for knee replacement surgery? Once she recovers from the surgery and the physical therapy she'd need, she'd be mobile again and reduce her dependence on you.

Hang in there. I know what you're feeling and urge you to take care of yourself first so you then can take care of them.

 

[Peter Morrison]

It isn't shameful to need some "me" time, when the demands and responsibilities of life exhaust you. I've known of caregivers who schedule their down time on a fairly regular basis. If you can put the household on a weekly schedule of tasks, chores, care, and responsibilities, you can give everyone their free time while maintaining proper attention to your wife. I don't know anyone (here particularly) who wouldn't like a predictable weekly schedule with predictable activities.

Your teenage children are most likely old enough to learn how to provide care for your wife. In terms of life skills and family togetherness, your kids can learn a good lesson in sharing responsibility and handling the needs of someone requiring special attention. It's a case of implementing a schedule that everyone agrees to, and asking your kids to pitch in is not out of order. Kids, no matter how old, can be very responsible if they know all the safety procedures and have access to everything they need to do what is asked of them.

An orderly household that runs on a schedule is usually a calm, peaceful place to live. Everyone knows what everyone is doing. Your wife is the priority due to her needs, but she is a family member like everyone else. Even though she commands a lot of specialized attention, I hope you don't see it as a burden. Your kids shouldn't see it as a burden either. Everyone makes adjustments to accommodate everyone else. There is emotional security in that. Your kids will get to spend one-on-one time with her.

Congratulations on doing as much as you already have for your family. You clearly love them and have taken good care of them. It's time for some help and a chance to implement an opportunity to provide quality life skill lessons for your kids. They will go through life having good memories of how much you did for them.

 

[texkag]

Thanks for your kind reply Mary.
Sadly there is only my wife's mother who is in her eighties and has her own health issues and her brother who lives abroad. The social care system in the UK is falling apart and so there is very little help available and that goes, quite rightly, to those in the most need.

The health system in the UK is also under enormous strain. My wife has an appointment to be assessed in two weeks time but then there will be another delay until she sees an orthopaedic surgeon, and then a further delay before any proposed operation. There is then the every present possibility of the operation being cancelled at the last minute.

I know that not much is going to change until such an operation takes place. I hope things aren't complicated by the blood thinning medication my wife has to take to prevent her blood from clotting. For now, I will try to get out of the house when I can and try to find some activity that I can use to connect with other people.

I have been working on doing the housework more efficiently and the children have been helping more. However, my daughter is in her final year at school and my son is going to be starting university this year. Anyway, trying to keep two teenage Aspies on task is sometimes a job in itself.

 

[texkag]

It isn't shameful to need some "me" time, when the demands and responsibilities of life exhaust you. I've known of caregivers who schedule their down time on a fairly regular basis. If you can put the household on a weekly schedule of tasks, chores, care, and responsibilities, you can give everyone their free time while maintaining proper attention to your wife. I don't know anyone (here particularly) who wouldn't like a predictable weekly schedule with predictable activities.

Your teenage children are most likely old enough to learn how to provide care for your wife. In terms of life skills and family togetherness, your kids can learn a good lesson in sharing responsibility and handling the needs of someone requiring special attention. It's a case of implementing a schedule that everyone agrees to, and asking your kids to pitch in is not out of order. Kids, no matter how old, can be very responsible if they know all the safety procedures and have access to everything they need to do what is asked of them.

An orderly household that runs on a schedule is usually a calm, peaceful place to live. Everyone knows what everyone is doing. Your wife is the priority due to her needs, but she is a family member like everyone else. Even though she commands a lot of specialized attention, I hope you don't see it as a burden. Your kids shouldn't see it as a burden either. Everyone makes adjustments to accommodate everyone else. There is emotional security in that. Your kids will get to spend one-on-one time with her.

Congratulations on doing as much as you already have for your family. You clearly love them and have taken good care of them. It's time for some help and a chance to implement an opportunity to provide quality life skill lessons for your kids. They will go through life having good memories of how much you did for them.

Hi Peter, your right that I do have to better organise my time and get the kids more involved. I know that if I was ill my wife would look after me with the same care and attention. She has certainly had to make accommodations for my ASD, not to mention the ASD of my children. The poor woman's in a neurological minority!

It can be so isolating not being able to go out to work, to have a career, work colleagues etc. I cannot even maintain a voluntary role at the minute. I actually lost one because I missed the training when My wife was rushed to hospital with a blood clot, this was when the knee was just becoming an issue. Sorry, I seem to be just whining now. I have a lot to be thankful for. I will find a way to free up time and try to get back out in the world and feel part of it again, to some extent at least.

 

[Peter Morrison]

It can be so isolating not being able to go out to work, to have a career, work colleagues etc. I cannot even maintain a voluntary role at the minute. I actually lost one because I missed the training when My wife was rushed to hospital with a blood clot, this was when the knee was just becoming an issue. Sorry, I seem to be just whining now. I have a lot to be thankful for. I will find a way to free up time and try to get back out in the world and feel part of it again, to some extent at least.

Your situation is that of a responsible parent with more obligations than might be healthy. I think you have earned your stripes. I think it is great that everyone knows and understands each other's needs. You have all the ingredients for harmony. When organizing schedules and chores, you'll all have to think differently and record decisions for everyone to see. This means lists and some kind of bulletin board with a calendar, contact numbers, medical information, and a running grocery list. A small amount of organization reaps great rewards. My brain gets flooded when I feel insecure about the status of things in my life. It's a case of learning not to worry because you are assured everything is in order. Worry of any kind prevents you from enjoying the magical time off. It's a different way of functioning, but it helps you maintain a clear head.

 

[Mary Terry]

Thanks for your kind reply Mary.
Sadly there is only my wife's mother who is in her eighties and has her own health issues and her brother who lives abroad. The social care system in the UK is falling apart and so there is very little help available and that goes, quite rightly, to those in the most need.

The health system in the UK is also under enormous strain. My wife has an appointment to be assessed in two weeks time but then there will be another delay until she sees an orthopaedic surgeon, and then a further delay before any proposed operation. There is then the every present possibility of the operation being cancelled at the last minute.

I know that not much is going to change until such an operation takes place. I hope things aren't complicated by the blood thinning medication my wife has to take to prevent her blood from clotting. For now, I will try to get out of the house when I can and try to find some activity that I can use to connect with other people.

I have been working on doing the housework more efficiently and the children have been helping more. However, my daughter is in her final year at school and my son is going to be starting university this year. Anyway, trying to keep two teenage Aspies on task is sometimes a job in itself.

I didn't realize that you're in the UK.

The blood thinner will definitely be an issue for your wife's surgery. The medical staff will take her off the drug prior to the scheduled surgery and will test her clotting propensity before they operate.

If you can afford it, consider hiring a maid to clean the house. Even if you can afford only one good cleaning instead of weekly or monthly cleanings, it will get the whole family jump-started on keeping up with household tasks on a regular basis. If you can't afford to hire a house cleaner, maybe you can schedule a weekend day for the whole family to collectively tackle the house cleaning and catch up on the laundry. Your wife can fold the laundry from a sitting position. Just getting things under control will be a relief and make it easier to keep up with it in the future. Your children sound awesome and they can help out with the workload.

Peter Morrison's suggestion about having a posted schedule for everyone is a great idea.

Please do schedule some time just for yourself to take a walk, go to a movie or a library, sit in the backyard and watch birds by yourself, or whatever will help you relax. You deserve and need it!

 

[Aspychata]

You seem to be handed everything at once. Have you sat the teenagers down and asked them for assistance or have you just let them slide. Tell them you need two hours, let one handle that slot. Because once they leave that option is gone. Another possibility, could you give someone a place to stay for maybe care for two hours a day, maybe meal time or whatever time slot? Sounds like you need a creative solution to tweak this so you don't burnout yourself. The border could just be for 6 months, like a university student.

 

[tducey]

Sorry to hear of your current issues, maybe you could look into getting some homecare for your wife so you can get a break.