I've appreciated reading these forum posts, and specifically respect those who need to vent/allow said venting/and find some catharsis in it. As a primary (only in my case) caregiver, sometimes you need an ear not a cape. "Seek resources." "Ask for help." "Can there be something done to reduce falls?" "Could it be a UTI?" (I swear if I get asked one more time about a UTI, I'm going to scream. And I get it, infections can throw folks off. It just always the default.). Listen, I'm a high-functioning professional who is more than capable of project management and I've managed the crap out of this one. And even writing "project management" makes me feel guilty for feeling as though managing my dad's entire life is a job. Guilt. Guilt. Guilt. With another helping of guilt.
My dad is 77 and has had PD for 30+ years. He was one of the OG DBS (deep brain stimulator) recipients, which allowed him to live a very 'normal' life with PD for a very long time. Eight years ago, his partner left him -- indicated he couldn't care for my dad any longer and wanted to be able to travel.
The past eight years have been... wild. He had a short-lived solo apartment setup, but lasted about four months due to the stove being left on. My husband (who is destined for sainthood) then suggested to buy a bigger house and move in my dad. We now live in a NexGen home, which was a perfect fit -- we also now pay a cool $8K for my dad to live in an ALF. He was able to live with us for about 4 years until he could no longer be left alone, alone. We evaluated doing in-home care during the day, which left us with overnight care. With the strong influence from my therapist and doctor, we realized we're not medical professionals (although I do feel I'm close to my M.D. through Google U!) and not equipped to manage the cruel and difficult progression of PD ourselves. His ALF has been great. Brand new, good staff, and a fabulous facility and programs for residents. My dad wasn't thrilled to move (and who could blame him?), but we couldn't risk falls and safety concerns while at work. The timing couldn't have been more perfect -- during lockdown, we were all able to stay home to protect him. Now the ALF is the right place for him.
With advanced Parkinson's, and active prostate cancer, things are getting complex. The cancer isn't being treated nor is it a priority considering the more concerning PD-related issues. Many, many falls. Many ER visits for CT scans to confirm the fall didn't do damage (none have to date). Incontinence. Dysphagia. And now, he has PD-related psychosis -- paranoia, hallucinations and the cognitive challenges that can come with the disease.
I am an only child. My mom died in 2020 (they were long divorced). I have no family besides my husband and nine-year-old son. None. I make all decisions. I manage all finances and insurance, medication issues, care plans. All appointments. I retrieve him from the ER when he falls. I have to make the decision whether or not to take him to the ER in the first place. This crowd on the forum are not strangers to this load.
Two months ago, I got palliative care on board. That NP was the first to really get a full picture of the psychosis, and that's because she spent more than 15 minutes in a doctor's office or as ALF staff, checking on him with his meds etc. After last night's 5th (6th?) ER visit in the last several months, I'm breaking down. Palliative referred to hospice. I already feel the judgment... remarks like "I didn't realize he was there yet," and the ALF resident director called me from her vacation and sounded surprised (two days ago she said his care level was fine). I'm not faulting anyone -- but I do feel that he's presenting okay-ish when things are more dire. The guilt, guilt, guilt is setting in.
So, my questions for this crowd: What is/was your PD journey like as a caregiver? Any words of wisdom?
NEXT STOP::
APPRECIATION STATION
You have family. You are married and have a son.. they are your backup. Every move you make, they are your cheerleaders! Your husband? He is holding your hand, your heart.
Your kid? He knows what you're going through.. He sees it. He is very proud of you. He knows he is in a good loving family..
stay the course.. Hold on, it may get a little rocky, but they got you..
Give yourself a Hug, a smile, and tell yourself - YOU DONE GOOD!!
and just know your whole family loves you.. you are stronger than you think.
Even if you had siblings, you would've been the chosen one..
it seems to fall mostly on one child, for whatever reason.. at least you don't have to argue with anyone!!! you hold all the cards..🤪
You have your own family (husband and young son) to put your energy into. Of course you will nitpick every detail, since you sound like me. The fact is your Dad has had a long and difficult illness, and you can't work miracles. He is suffering with 2 diseases that are brutal. None of this is your fault, either. Why are you feeling guilty when you are doing everything for him?
Hospice is where he's headed and you need to face this. Dad needs what you cannot provide. You must know by now that caregivers under such pressure like you are tend to die before the elder does. You didn't make vows to your Dad, but your husband. A young boy doesn't need to see all this constant illness and drama.
It's a horrible situation. We all have gone thru similar tests of courage. But the reality is that untreated cancer is going to end it. Why hasn't his oncologist or neurologist ordered Hospice yet?
I wish you strength to get this project completed and put your energy into your 2 men at home. Not fair to them at all. Have you had a checkup yourself? How's your blood pressure? What if you have a stroke or heart attack under the stress?Who will Dad depend on?