Ain’t gonna blow smoke up yer butt…it does suck. But I’ll also add that, with proper medical care and consistently taking medications, I’ve got patients with Parkinson’s who are very close to symptom free for years - many years - after diagnosis.
Part of the best medical care includes Physical Therapy, in my experience. I’ve gotten early warning of problems most often from Physical Therapists who notice the slightest bit of hesitation while stepping, a particular foot drop or tremor or other very subtle symptoms even before the patient does. This lets us alert the doctor who can suggest treatment regimen changes.
I would suggest helping him find a single floor residence, if at all possible, now while he’s still healthy enough to pack and move his own stuff and feel like he’s not totally at the mercy of help from others. Yes, some people with Parkinson’s manage stairs just fine, but stairs in general just provide such a fall hazard for older adults, it’s one of my primary concerns regardless of diagnosis. If he’s unwilling or unable to move, making sure that there are bannisters on both sides of the stairs, and that those bannisters are properly mounted into studs and strong enough to bear 200 pounds of weight is the next best step. Grab bars in the shower and/or a shower seat or bench are a good idea too. Even if he doesn’t need them now, he will likely need them eventually.
I’d also look into getting an alert device. If he’s still out and about a lot, there are some now that work off cell phone towers, so they work anywhere you can get cell phone reception; they’re not limited to the house itself.
I also like Nava’s idea of a housekeeper or companion. It’s often easier for people to accept help from relative strangers or paid help than it is to accept the help of their family members. If it is financially possible, finding someone now might help make the transition into needing more assistance later easier. In my city, the Department of Aging will arrange housekeepers (cleaning, laundry, cooking) for low-income people with disabilities at no out of pocket cost. Hours are based on the level of disability - people with good function at the time of evaluation may get 2 or 3 days (usually 4 hours a day) a week, and if/when they decline, they can be reevaluated for more hours of service.
I’ve seen other people make private arrangements, either paying for a professional, or finding an older but still well functioning person who needs a home, and trading household assistance for room and board. Sometimes this works well, sometimes not. When it works well, it’s a beautiful thing, but a contract needs to be used, carefully delineating duties, hours, time off, notice required for quitting, etc. for everyone’s sake.
If your Dad has traditional Medicare and meets their criteria for “homebound”, he has a home health benefit he can use. A nurse can come to teach him about his diagnosis, evaluate his need for nursing and therapy and arrange for in-home nursing and physical and/or speech and/or occupational therapy. “Homebound” doesn’t mean never leaves ever, it means that due to his medical conditions, leaving home requires a considerable and taxing effort (needing the assistance of another person to walk safely on uneven ground counts) and excursions out of the house are infrequent and short. Homebound people can go out to the doctor, to the hairdresser, to church, to family reunions, etc. - they’re just not going out bowling or spending many hours shopping at the mall on a regular basis. Medicare’s home nursing doesn’t cover full time nursing care or sustained visits forever, but it’s a good way to get temporary help and education so that he can remain as independent as possible as long as possible. Most private insurance also has some coverage for home health, but eligibility and benefits vary. So he may not be there yet, but file it away in your mind for future reference. If it seems like a nurse or home therapy might be useful, ask his doctor for a referral to home health care.
Finally, because someone in your life is bound to bring it up, a note about Power of Attorney for Health Care. Yes, your dad should pick someone to be his PoA. That may or may not be you. The PoA doesn’t “make decisions” for the person, the PoA *communicates *the decisions that the person would have made, when they are unable to communicate them on their own. That means that a PoA (for healthcare) doesn’t have any powers at all until/unless the person is declared mentally incompetent in court OR they are unconscious and unresponsive. So this person has to be someone your dad trusts, implicitly, but more importantly, it has to be someone you dad is comfortable taking about What Ifs with. He may not want to burden you with those conversations, and that’s okay…as long as he has someone else who he can have those conversations with. My PoA is a coworker, not my husband. While I have discussed these things with him, if the time comes that I’m in truly serious trouble, I want him to be my love and my support and deal with his own emotional process. I don’t want him to have to be the one to make difficult decisions while he’s an emotional wreck. I want someone slightly more emotionally distant, who can hear what the doctors are saying without a cloud of denial and grief clouding her judgement.
Ok, I’ll stop now. This post is about 3 weeks of patient/family education as I normally do it, so I know it’s overwhelming. Bottom line: hang in there, and know you’re not alone. There are resources to help you and your dad through this.
