What planning?

howdoidothis

I used to love the start of a new year and being able to plan events.
After my mother receiving her diagnosis this past fall, it kind of feels like 2020 again when we never knew how long we would all be stuck.
She’s doing well right now and I probably wouldn’t hesitate to leave her alone for a week, but I have no idea what the situation will be like in July, or how next Thanksgiving or Christmas will be.
It is so very stifling.
How do you not lose yourself?

H1235

The not knowing what happens next or when it’s going to happen is hard for me. I am a planner. As dpoa the responsibility is overwhelming and consuming, mentally, physically and time. For me having some plans in place for when things go bad helps ease my mind a bit. But even that is hard with a difficult sibling. I am also doing my best to educate myself on everything dementia related. I may not know what will happen next, but I have some idea and will hopefully not be too shocked or unprepared when it happens.

Emily 123

Agreed. I feel like I'm in stasis. I know I should just do what I need to do—Mom's at a good facility—but when the wheels fell off the bus and she moved closer to me I had already been thinking about moving, so that I'd be settled in a new town by the time I retired. Most of my friends have moved on and I'm stuck here on hold. Almost five years in of watching her hit every branch on the dementia loss tree on the way down to late stage 6. I don't even care about keeping up with the house anymore—I just look at things I used to like to do, like the gardening, and think 'meh, who cares?' The dogs and my job are what get me up and moving. And I don't like my job, but…bills, and I work from home, which is nice. I feel frustrated, guilty, and sad. I hate not having a plan.

Quilting brings calm

I think you do lose part of yourself … and that’s with them in a good facility. Mom had periods of stability but could and turn extremely needy and weepy often. It got to the point that I did not tell her if I was going away for a few days… because telling her resulted in a zillion phone calls while I was gone, a drop in her ability to function, and sometimes an ER visit. I would tell the office manager. So they would know.

We did go away about three week a year the last couple of years because my spouse has numerous health issues including poor eyesight. We wanted to travel while he still could. I also needed that time to decompress and relax. I am a wound tight kind of person and that’s hard on my emotional and physical health.

If I went to an event with friends - I would drive myself because I could get a phone call and have to leave.

fmb

Like H1235, I am also a planner. I have made all the plans I reasonably can, right down to DH's funeral. For now, though, I feel like my life is in an interminable holding pattern. DH is in Stage 7 ALZ w/CHF, living in an ALF with enhanced services and hospice care. When someone told me last week that he could live another year, I recoiled in horror.

Like QBC, I'm also wound too tight. I always drive myself anywhere so I can leave immediately if I get a phone call. My phone is an extension of my body; I don't even go to the bathroom without taking it with me.

Like Emily123, my once beautiful gardens have gone to ruin and are badly overgrown. I have no energy nor inclination to try to undo two years of neglect.

I do have plans to move about 80 miles away to live near a friend in a new locale, but am still stuck in an ancient trailer in a rat-infested trailer park. Many days it seems like I am just going through the motions.

Having said all of that, I do try to make small plans and give myself something to look forward to: a rare restaurant dinner, a weekend trip to see my friend, a small shopping spree at Goodwill, a walk on the local trail in good weather. Without these little things to look forward to, I simply would not make it.

GothicGremlin

I know these feelings well. Like most of you, I'm also a planner. My sister, who passed away earlier this year from Alzheimer's/FTD used to tease me all the time for having a Plan A, Plan B, Plan C, and occasionally even a Plan D. Because, you know, just in case.

About a year after her diagnosis, most of my well-thought out plans went out the window. I had all of the legal stuff in order, but aside from that, I was left with only mere outlines of plans, because Alzheimer's is so unpredictable. It was disconcerting for me not to have a good plan. Spontaneity and vacations were out of the question, and I was in that Alzheimer's holding pattern that we as caregivers know so well. I often couldn't even take a shower in peace.

And yeah, my phone was always by my side. I kept it on the nightstand with my sister's memory care facility and her doctor in my favorites list so that if they called me at 3am, I would get the call. And yes, that happened a few times.

I did little things to keep me sane. I saw a therapist once a month. I'd do my own nails in colors that made me happy. I went to the gym as often as I could (which was not often), and once in a blue moon I'd go to my goth club (with my phone), dance, and pretend that Alzheimer's didn't exist.

Without doing those things once in awhile, I would have lost myself.