The Absentee Blogger Returns-I Fear This is Defining Me
It has been months since my last post that wasn’t a news item.
In that time, I’ve been to visit my parents monthly and have come back overwhelmed each time–unable to write and relive the experience.
In that time, the decline has been steep.
My mom is no longer mobile. She relies on a scooter and wheelchair. It takes three people to move her (or one of me when I’m there, and I can no longer do it out of fear of divorce based on an injury I suffered last time I was there).
My dad’s Alzheimer’s seems a bit worse, but his anger and frustration is MUCH worse. It is aimed at my mom, the staff of their assisted living facility, my sister or anyone else who will listen. It can go off from any little thing like there being no bananas in the morning (“There are NO FUCKING bananas.”), to his frustration with my mom’s situation and their declining situation in general.
It sucks for them both.
I have taught my dad to Skype, which has had some unfortunate consequences.
Mom was in the hospital and a rehab facility for 6 weeks and he was on his own in the facility. We skyped each day. I happened to be traveling at the time and we skyped one day from Paris. Apparently Dad had had an “accident” not making it to the bathroom in time. Of course, he answered the phone anyway and when I suggested he call me back, he forgot to turn off the camera.
Let’s just say that Dad can still clean up after himself.
I just didn’t need to see it.
Hysterically funny and horrifically sad at the same time. I’d rather laugh.
Advocacy has become an even larger portion of what I do and now involves 16 calls a day to caregivers, doctors, nurses, insurance companies, etc. I don’t know who people survive and don’t get screwed without an advocate.
The amount of money that must be lost is staggering. I have caught billing errors from Doctors, reimbursement errors from Medicare, Insurance Companies, etc, that totaled thousands of dollars. What happens to the people who have no one to check?
My sibling continues to play a minor role and is dealing with her own issues. I can’t be angry with her, but I will always be resentful. Always, as in for the rest of my life.
The staff sees it and has commented on it calling her “a piece of work”. They jokingly ask if she is seeing my husband as a therapist and tell me she puts a Capita D in Dysfunctional.
The nurses’ attitude towards my parents have decidedly changed since their decline, and I’ve had to address it with the management. I’ll be the first to admit how difficult they are, and that my dad is angry.
For my entire life, I’ve always wondered if my mom’s behavior was due to a diabetic reaction or she was just being herself. Now they see it too.
By the way, most of the time, she’s just being her difficult self.
When I lost it on the staff last visit, they know it was serious, telling me: “we’ve never seen you without a smile. Every parent should be blessed with a son like you.”
I walked away, cried and said to myself: “No. Every parent should be blessed with two children like that.”
They’ve let me know in no uncertain terms–both separately and together–that they don’tDon’t like where they live. “It’s Not Home,” they say. It cuts like a knife each time they say it. And yet I know that one or both of them would be dead if they still were “home.”
No one would be checking in on them. No one would be handling their finances, and no one would be doing checks and balances with their health care providers. Just last week, my mom’s neurologist wrote orders incorrectly for a treatment she is receiving for her neuropathy. This is the same doctor who in his report made note of my mom’s Type 2 Diabetes. There’s a vast difference between Type 2 (usually Adult Onset having more to do with diet and excercise) Diabetes and the Type 1 Juvenile Diabetes my mom has had since 1946.
The doctors keep saying she mystifies them and they’ve never seen anything like it. There’s a good reason. There just aren’t that many Type 1 Diabetics around. Thankfully life expectancy from diagnosis is different today, but back then, Type 1 diabetics weren’t expected to live into their 60s, much less nearly 80. For a doctor to make that error is beyond incomprehensible.
Every day is a fight–fighting for care, fighting for medication, fighting with incompetent care providers who either prescribe the wrong things, aren’t responsive or are dumb and lazy.
My life has turned into 16 calls a day from Area Code 239. For my birthday tomorrow, I want my partner to handle all 239 calls.
He’s been amazing, but I fear this is defining me and taking time and love away from him.
I am the eldest son of elderly parents who lives 1,500 miles away them. My mom has been a Type 1 Diabetic for 65 years; My dad has the early stages of Alzheimer's. They are now in assisted living.
I just want to offer you encouragement. I was where you are not that long ago. I finally convinced mom and dad to go into assisted living during a crisis when their home health nurse telephoned me (thousand miles away) to tell me it wasn’t safe for them to live alone anymore. If they didn’t choose a place to go, the social worker was prepared to take it to adult protective services and force them to choose a place. I convinced mom to go that weekend and went south to help them move.
She also insisted that “it is a nice hotel, but it isn’t home”. I told them I understood but “for now” you have to stay here. Just 4 months later mom fell and broke her hip, and was in the hospital when I flew down again. Dad has Alzheimer’s and luckily was in assisted living, not alone at home. Even in her pain in the hospital she told me “God must have been watching over us because now I don’t have to worry about dad”. She didn’t survive the month after her hip was broken, but fortunately dad was already settled in the assisted living facility.
You are doing the right thing. Their needs will change and you will continue to have to operate from crisis to crisis. It is hard to do from a distance. You can look at other assisted living facilities, or have a companion go in an hour on some days to just help you assess whether their needs are being met. It helps to have another opinion to fortify your resolve or help you find other options.
Hang in there, and keep writing. Your blog will help others, as it is now helping me.