My husband has just gone through life which has been good for us until it wasn’t. Never really planning much and now he has Parkinson’s and is not at all well, we are struggling especially the children and grandchildren are pulled into it. His father depended upon him and his brother and sister and he has done the same. His mother died early so was not in a consideration. I am writing now as l am very concerned much has already affected my health and my daughter’s health managing him as he has always been difficult to manage. We actually live together in a house which is now my daughter’s. My sons live abroad and care for their own families. Now finally they are planning some little help and l am rather certain there will not be much available when help will be needed by me. For many years l have wanted to leave him and his mindlessness but have been lately much more involved with him as to help and protect my daughter and have the rest of the family be continually respected that we are a good, normal family which is extremely important to them. I feel a tiredness for the last years that is not common to me and now have health problems of my own. Family always called me Superwoman and Supergrandma!!!
This sounds overwhelming, and it can be, so start by listing the tasks, chores, etc. That would include appointment management, transit to and from, any issues with that (such as difficulty getting in and out of vehicles), medication management, lists and contact information for your husband's medical team, as well as other challenges and obstacles.
When I first became involved, I spent some time creating a medical history, with SS, Medicare and Medigap contract numbers, names and contact info for family, backup/emergency contacts, anyone who has been given DPOA, POA, DNR and/or POLST authorizations. Allergies and reactions, specific medical issues, surgeries (with dates, D'X, etc.), and a list with contact information for all treating medical personnel were also included.
This can act as a basic outline of what exists now, and can easily be amended when future needs arise.
Eventually the history pushed toward 10 pages long, but hospital admitting, ER and other personnel said they found it very helpful, especially out of town Snowbird hospitals.
If it just seems like too much, start jotting down what you do on a daily basis, then consolidate it under a category. Notations could also include challenges that are either existing or expecting to be an issue, such as transportation during inclement weather, need for in-home care, etc.
Determine what papers you need to protect yourself. And be able to obtain help for your husband.
POA for health and finances.
What type of care does he want for End of Life? Every State may have a different name but all will have a form for indicating what treatment is to be done.
CPR? Works on some, not all. Good chance of broken ribs and or sternum.
Intubation? if so for how long? Full treatment? Selective? Comfort focused?
Medically administered nutrition? Long term? Trial period? None?
What happens when his care becomes more than you can do?
Caregivers in to help?
Placement in Assisted Living? or if dementia is part of the diagnosis Memory Care? (side note if there are tubes for feeding or intubation Memory Care is not an option it would be Skilled Nursing. )
I would opt for Hospice as soon as possible (forget 6 months or fewer)
You will have the help of a CNA several times a week. A Nurse weekly and medications delivered to you as well as all the supplies and equipment that you need to care for him safely.