Parkinson's multiple system atrophy (MSA). What next? Where is the road map? And how long will the trip be?
I noticed a Parkinsons Pisa like tilt in my wife about 5 years ago. About 18 months ago she underwent hip replacement, but seemed to have trouble recuperating. After many specialists, tests etc. she has been diagnosed with MSA.
We are viewing this as another adventure in our life together. BUT: some
practical down to earth suggestions please as we begin this new adventure.
Take care of myself of course- How?
Installed extra stair railings, grab bars in tub/shower, taped down edges of rugs, grab bar in bed, etc.
How else to help her? Flowers, cards, etc. Asking others for help, etc.?
How to best help my wife. Am doing laundry, cooking, washing dishes, shopping, making bed.
Have been raging against God, as Tevye in Fiddler on the Roof (If I were a rich man...)
What next? Where is the road map? And how long will the trip be?
Respite care will be your friend to take care of yourself, even for a few hours.
Like others mentioned...planning for the next steps will be key, that way you are not second guessing yourself if it was the right decision.
And do use this forum for guidance, help, venting...you will need it.
Hugs!
I haven't thought about the daily ins and outs that come with MSA in more than 2 years now. I apologize in advance for how disorganized this answer is. Some things to consider:
We ran out of places to install grab bars.
Get a raised toilet.
Get the Gold Violin catalog.
Daily exercise - stationary bike, 1-pound dumbbells, sitting on an exercise ball.
Core strength eventually deteriorates to the point of being wheelchair bound and then bed bound.
Enjoy meals while you still can - eventually swallowing is affected.
Orthostatic hypotension after meals is a problem.
Speech therapy - vocal chords are affected.
Handwriting becomes like chicken scratch.
Fall prevention - start using assistive devices sooner rather than later.
Medications - work with a neurologist who specializes in neurodegenerative disorders because the meds must be balanced and adjusted.
Car rides - a car seat that's level with her butt will make it easier for her to get in and out of the car; there's also an assistive device handle for the car.
Get a handicapped parking placard from the DMV.
At some point her body will be unable to regulate her body temperature.
Do things as a couple while you still can. Visit family and friends. Travel - there will come a point when airport travel will become impossible. Some places are more ADA accessible/friendly than others. Disney - and resorts like it - are super accessible.
As her caregiver, make things as easy on yourself as possible. Online services and delivery services are your friend.
Get your important paperwork - living will, will, DPOA - together. Have the hard discussions about what your wife wants and does not want - my MIL did not want resuscitation, artificial life support, feeding tube, etc. - now.
I wish my FIL had had half your strength and grace in dealing with my MIL's MSA diagnosis.
From time to time, people starting the journey ask me questions or what I would have done differently.
My first two responses are - travel if you can (if you like to travel), as this will be the best it will - don't put anything off - that you've always wanted to do. Whatever your finances will allow - do it now.
Get all of your paperwork in order and discuss end of life decisions when one is still relatively healthy and can make the decision.
We had all of our legal paperwork complete and review / update it every two years as (older) people in our life change. However, I/we did not specifically say - what do you want to happen as you progress. Who do you want to take care of you or how do you want to be taken care of.
Originally, we women / caregivers think we can do it all and have the best intentions. Then gradually, without even realizing it, the disease has taken over the caregiver's life too. Every so often one more thing is added that we need to do on a daily basis. For example - he use to be able to stand and brush his teeth. Then he could no longer, get the toothpaste on the tooth brush, then he could not turn the tooth brush on, then he could not remember to move the toothbrush in his mouth, then spitting became difficult, etc. Something that should take 2 - 3 minutes - now took twelve plus. And, so the day goes...
I was not familiar with the Gold Violin catalog, but will check it out.
Two books - recommendation... One can read a page or two a day (as who has time to read).
The 36-Hour Day
Ambiguous Loss
I do see LTC in ur future. Please know that you will not be able to do it all. You may want to start thinking if Medicaid is in your future. As the Community Spouse assets will be divided. The house and car are not included. You will not be made impoverished. This is something that needs to be looked at before the need of a NH. Wifes half will be spent down. If you can, consult with a lawyer who is versed in Medicaid to learn how to protect your self.
For a lot of us caring for loved ones, there is no light at the end of the tunnel and if there is, it usually the headlight on a freight train. Flowers, candy, romantic heartfelt poems and such are wonderful little ways to Show your love, but they don’t help much when you’re up at 3AM changing incontinence underwear and sheets. The most helpful thing I’ve found is to be realistic about my husband’s prognosis and that’s the most difficult thing I’ve ever done. There is no romanticism in what I have to do for him, the constant worry about his heart and lack of mobility. It’s not the kind of retirement I ever expected. But it’s the hand I’ve been dealt. I don’t volunteer with an animal rescue any longer, but I have my dog whom I love very much. I pester my kids to see my grandkids as often as I can. I go to bed at 10PM even if I’m not tired just to find some peace and escape in a book. I stopped worrying about housekeeping and do the minimum. I love the job I had to get to help pay bills. No one can give you a spread sheet of what you need to do to keep yourself from imploding. What works for us may not work for you. But eventually you’ll find that you’ve reached a middle ground.
I found the hotline. You can call them with concerns and advice......
Hotline at (866) 737-4999 for help in coping with an MSA diagnosis and prognosis.
Keep reading and researching on this forum.
Investigate her condtion by clicking on Care Topics.
Guard against burnout:
1) hire a housekeeper on a regular basis.
2) join a support group for caregivers.
3) Always treat each other kindly.
Others will come alongside of you and give better advice.