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.
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.