He was diagnosed with PD five years ago and, although he is still ambulatory, the disease is really taking over his life. It forced him into retirement and he spends most of his time in bed due to extreme fatigue and (I think) depression. He requires increasingly more assistance, is becoming incontinent, and is showing some signs that indicate the beginnings of Parkinson’s dementia. I still work from home and need to continue because I am our main source of income.
I am also helping manage my elderly mother’s care and feel stretched too thin. The idea of being a full-time caregiver for the rest of my life is daunting. Any wisdom or advice is welcome.
If your hubby started cognitive issue, be aware. Many facilities refuse to receive him for having Lewy Body. But if you choose to keep working, it gets almost impossible to keep him at home unless you earn a lot to hire a full time caregiver or you have someone in your family to be able to care him.
About joint account, watch out if you want to apply for medicaid since your income will be included for the consideration of applicability.
I don't earn much and I need to work to send him to the facility , but they consider I earn a lot . I needed to separate the account so he is applicable for medicaid.
Sorry for not giving you good advice. But at least I wanted you to get prepared for what is coming to you in the very near future.
One more thing to add.
If he started cognitive problem, it is Lewy Body Dementia. And you say he is depressed. Learn more about LBD. It is critical what medication is given to his depression and cognitive issue. LBD patients are extremely sensitive with medication, and any generally used psychiatric medications can make the symptoms worse.
Don't get burn out, and you take care yourself.
I'm sorry to see about your husband's condition with PD. His condition will only get worse over time. He should be placed into a facility for assisted living, hopefully with therapy for his condition. If necessary, he might have to spend down to Medicaid level with help from a Medicaid specialist.
My brother has had the same Parkinson's condition since around 2019 and under the best of care in an Oakland facility since 2020, with his friends as his POA since I am unable to take responsibility for it. He had exposure to what I think was Agent Orange in the Vietnam War (try to keep this part confidential!).
My husband has Parkinson's and some related dementia. He was diagnosed in 2016.
It's very important for a person with PD to stay mobile. The advice of "if you don't use it you lose it" is absolutely true. Staying in bed will increase the progression of the disease.
Other conditions can affect PD. My husband's degenerative disc issues and arthritis needed to be addressed, so he could be as pain free as possible to want to keep his mobility.
And yes, if depression is involved, their world can get very small. My husband got to the point where his daily walking was from bed to kitchen table, to recliner in living room, and back to bed.
There is a PD program in our local day hospital called Think Big. It shows how a person needs to make exaggeratedly big motions, since over time movements get smaller. Feet shuffle. Arms held to sides when walking. Also the voice gets softer over time.
A geriatric psychiatrist could be beneficial to address the depression.
Also, have the doctor make new referrals for PT and OT. It's important for them to see the home and make recommendations.
I put extra handrails in the bathroom. One vertical in front of the toilet, to make it easier for hubby to get off/on toilet safely, and one horizontal on wall (4 ft long) so he can grab it while walking from bathroom door to toilet. We also had a taller toilet installed. The OT recommended white gripper diabetic socks. Has non-slip grips on bottom. White so any blood from scrapes or wounds can be easily noticed. The PT assessed for what type of walker would be best. Rollator vs regular. Rollators provide seating, but may roll away more easily.
Fall risks are important to assess by PT. No rolling office chairs. May need to put low chairs or sofa on bed risers so easier to get on/off. There's a bedside handle that is secured under the mattress. Hubby grabs the handle to help himself sit up/lay down on bed. Very helpful. Bed height should be addressed. Feet need to be on floor when sitting on edge of bed. We invested in a lift chair with only up/down buttons. Easy to operate.
I packed up our China and got Correll unbreakable dishes. No worries if hubby wants to carry his plate. We also switched to decorative plastic cups instead of glass for everyday use. There's also long handled shoe horns, and devices to help put on socks. I was amazed at all the gadgets available for people with physical limitations.
The most important thing I learned is that I could not make my husband do things. He had to be self motivated.
Good luck. It's a long road ahead.
Those are your boundaries.
Beyond that you decide do I
1.) Hire someone to come in and help. or
2.) Place hubby in a facility that will care for him.
There is no right or wrong answer.
Placing someone does not mean you do not love them. It means you love them but their care is more than you can manage at home.
In the mean time you look for programs that might help you.
Are there Adult Day Programs your husband can participate in? They generally pick up in the morning, transport to the program, provide a snack, lunch and bring the participant home late in the day.
Is your husband a Veteran? If so depending on where and when he served the VA may have programs that can help. He may qualify for many services as well as compensation if ANY of his illnesses can be attributed to his service.
Check the Senior Service programs in your area they may also be aware of programs or Grants that you may qualify for.
Hiring a caregiver now to help you out might be a great idea. While he may not need much actual help now getting him used to the idea of someone helping out is a good idea.
I also agree that your husband needs meds for his depression and maybe his cognitive issues (Lewy Body dementia often occurs with PD).
Please make sure that your husband has all his legal ducks in a row: an assigned PoA (and a back-up if the primary is you); a Advanced Healthcare Directive, a Will, make sure you are the beneficiary on his assets, you are joint on his accounts, your name is on titles and deeds, and that you know where all the important paperwork is.
I'm so sorry you have to go down this pathway. Please make self-care a priority. Don't sacrifice rest and vacations and enjoyment because you will burn out. And, make sure you have your own legal ducks in a row.
I would also meet with a Medicaid Planner for your state and also maybe a financial planner so you can stretch your marital assets to cover his care. May you receive wisdom, energy, and peace in your heart as you move through these circumstances.
We are human beings. Not Saints. And the definition of the job of Sainthood isn't great, anyway.
You are being realistic in your assessment that this cannot go on and isn't sustainable, not for ONE person old or/and debilitated, and certainly not for two while you still attempt to work.
I am assuming your mother doesn't live with you. Be honest with her that you are stretched too thin and she needs now to hire in some help, and move to supportive care, letting her know you cannot handle all you are attempting to handle.
If will be a relief to simply be honest and remove this from the plate as her needs become more and more/worse and worse.
Time now for full workup and assessment with doctor and discuss with hubby and doc that you cannot sustain home care at the point hubby isn't mentally competent anymore, and is physically incontinent.
It's also time to see an elder law attorney with all the facts of assets and finances so that you can prepare for division of finances for hubby's placement and your own life ongoing.
I would say honesty and options must come to the fore now. You are struggling against what is presently too difficult, and against what you see coming. You are anxious and fearful and right to be so.
IF some medications, anti-depressants or whatever, might help hubby that's certanly worth a try. And may or may not help. But right now there are two goals you must meet and both involve honesty with yourself.
1. Recognize your limitations honestly
2. Share those limitations, lovingly, with those you love.