I have been feeling guilty because it seemed like everything was getting farther and farther behind around here. Meals were sketchy, desk work was piling up, and dust bunnies were having more dust bunnies.
Then last week I looked through our calendar for the year. Between February 1 and September 30, the two of us had 69 medical visits. (It probably would have been more, except that we were snowed in for most of the first six weeks of the year.) That included three surgeries (two of them mine), practically every scan known to the medical community, a visit to the emergency room, and consultations with so many specialists that I'd have to find their business cards to remember who they were. As nearly as I can remember, none of these visits had anything to do with DH having dementia, but dealt with other medical problems.
I'm sure you can imagine the phone calls and insurance issues and new patient paperwork involved to process that many medical visits--not to mention all the hours spent driving and waiting (and waiting) to see the doctors.
Most of these visits were complicated by the fact that I've "graduated" to a wheelchair. Most medical complexes are designed well for dropping off a passenger with mobility issues, but are not designed so well for a driver who has difficulty walking. At one big medical complex, I had to drop off DH at the front door to get a wheelchair, and then try to tell him where to meet me in a five-story parking garage. I get cold chills every time I think about it, even though it worked out fine. And yes, I had to take him with me, because the appointment was for him!
In addition to the 69 medical visits, we also had home visits by our case manager, a medicaid hearing (terribly official, with a real judge) when they wanted to terminate DH's benefits, visits with lawyers on non-medicaid issues and a car that had to go to the shop about every six weeks through all these medical visits.
A couple of weeks ago I had three days in a row when I didn't have to go anywhere. I had plans to get all kinds of things done, but my body wouldn't cooperate. On the first day, I had breakfast and sat down. On the third day, I was still sitting. Thankfully, on the fourth day I got going again. All this wonderfulness doesn't stop just because the caregiver is dead on her feet.
This is why when I went to a new doctor, after I told him that I took care of a husband with dementia and he said, "Oh, you're a housewife", I wanted to kick him. I do think that some people, even doctors, think that caregivers sit around the house and eat bonbons all day, and use "caregiving" as an excuse for not getting more done. Oh, how I wish that were true. Some days I could really use a nice dish of bonbons--or a very large drink of the alcoholic variety.
So, anyway, I'm trying not to feel so guilty about getting behind on things. Now it's more like I'm surprised that I found the time some days to shower and brush my teeth, and that there was enough brain matter left to make sure my shoes matched when I left the house. And I'm kind of proud that I actually showed up each and every time at the right doctor's office on the right day!
Dear Jan, The wonder is that you're still getting out of bed each day and taking care of things. I know that you've been at this for at least 7 years. Hats off to you, and I hope that you'll take advantage of any break that might come your way. Much love. Mary
Jan, you are an awesome caregiver - both for your DH and yourself! Get some bonbons and put your feet up - and have that glass of wine! Thinking of you.
Jan, you are an awesome caregiver! Trust me, I know how hard it is to have mobility issues and take care of someone with dementia. With my progressive RA, my husband used to push me in a wheelchair whenever we went somewhere that demanded a lot of walking (hospitals are notorious for long corridors leading to another long corridor). Then he broke his knee cap and we're both in wheelchairs when it comes to walking any distance. VERY difficult to manage.
Unbelievably heavy load, Jan. Just let those dust bunnies hop around. Who cares? Focus on your own and DH's health matters, and let the rest go. My one "helpful hint" is to pay each bill the minute it comes in the mailbox, and then put it in the car so it will actually be mailed when you are out. (Unless your postman will pick up the mail at your home.) I didn't get much done, but I did pay the bills. It was so easy to lose them or forget them.
Good advice about the bills. Losing track of them is something I have been doing since my husband got worse. If my family members knew, maybe they would see this as one of the "10 Signs of Alzheimer's."
BTW, that "10 signs" thing is really starting to bug me. In the home where my husband is, there is a the bulletin board outside the dementia unit, with notices about special events - singing groups, pizza parties, holiday celebrations, etc. Yesterday, when I visited my him, I saw that an Alzheimer's Assn. poster listing the "10 signs" had been put up there. What's up with that? Does someone think visitors to the "Secure Dementia Unit" need clues to figure out whether the residents might have dementia?
Jan K, I don't have mobility issues, or anywhere near the doctors visits that you've endured & I still don't get much done! With me, at least right now, it's the emotional aspect of it that gets to me & renders me motionless!! I try to ignore the dust bunnies, but eventually even I can no longer ignore them. I live in fear that my sister-in-law (the original anal retentive Mrs. Clean) will drop by...... :)
I'm with Mim. the emotional aspect has rendered me almost incapable of doing anything, whether it's following a thought or completing a project. I just want to climb into bed and cry.
I know me and when I get to this stage I tend to be very mean to people who enter my space, whether it be calling, visiting, or suggesting that they can help in any way. I want to tell them to GET OUT OF MY HOUSE AND LEAVE ME ALONE. Instead, I just don't respond to anything. Not sure how they feel about it but it works for me.
I understand about the emotional aspect rendering us almost incapable of doing anything. I used to have the emotive depth of a block of wood and was less busy than one. Then I realized I was living a life that even a block of wood would run away from screaming. Do what I do with the dust bunnies. Have the cats herd them up into a corner. Rolling, rolling, rolling...rawhide!
I haven't had a life for so long I go to my neighbour's house and peek into theirs. Not that great. I'm so lonely I can make tears cry and nobody my age has a relationship I want. My viewpoint may be a bit slanted; though I know that eight years of being tortured is no excuse. Or maybe it is.
The thing is all the scenes in the windmills of the mind are so full of movie clips like Moonstruck where Nick Cage and Cher have 'found' each other or at least are close to finding each other tearing off their clothes, clutching each other breathlessly saying things like "I was dead inside" where they subsequently one presumes discovered themselves in each other's underwear. Reality is a little different. In reality I'm slouched on the couch in yesterday's underwear watching people noticeably younger than me taking viagra and advertising depends. My God said Joan Rivers they walk around on that stuff like the rock of gibraltar for four hours while the poor women after menopause run away because they don't want to be set on fire.
"She so looks forward to your visits." the walking Medusa said. She had really big hair and a tiny little brain. My wife wouldn't blink if nuclear weapons went off I thought of answering. I suppose the Rube Goldberg dancing teeth are necessary to keep from going starkers but I've had enough skirmishes with land walruses to know they're not thinking anything. Stick around maybe she'll play the piano just as soon as she remembers what it is, how to walk, and how fingers work. Loosen your bullets there Wolf, they're just folk and stop translating everything they say as Goofy. "Gaawrshh she likes your visits, ahh yup, ahh yup, ahh yup."
I wonder what Dianne would have thought of me learning to snap my fingers to William Tell's overture (the lone ranger). I can see her rolling her eyes watching me learn and then smile when I suddenly do it in a completely unrelated response to what someone said when we go out somewhere. I used to live to be an idiot but I lost my audience. They became the masses running away screaming in the movie poster of my life while I sat strumming the ukulele with godzilla looming in the background. I'd read somewhere anyone could play one. That didn't turn out to be true either.