Out of the shadows...

IDrive3

I've been reading and learning a lot from all of you (Thank you!) and sharing a little.  Now, I'm sharing more.  Watch out!  I really mean "more"!

My sister (and only sibling) was diagnosed with AD a little over 4 years ago.  Showed signs of something wrong at least 2-3 years before that.  She worked as a psychologist and did the dementia training for other staff, so she knows a lot about the disease - even now.  When confused about something soon after diagnosis, she told me "I must be confabulating."  That's how I learned that term.  We've pretty much lived together our whole lives, so I slid into the primary caregiver role.  She is not argumentative or violent at all.  She willingly gave up driving after an evaluation.  I've always been the "math person" of the 2 of us, so she eagerly gave up financial control.  I count myself lucky on those points.  We connected with Alz Association right away and took several classes, joined side-by-side support groups, updated wills and POA's for both of us.  (Her medical POA was activated last month.)  I work part time (with a funky schedule) & we have "helpers" coming while I'm gone.  She doesn't like me leaving.  It doesn't help that we've had over 30 helpers from 2 different agencies in a year and a half!

We've been helping our parents, too.  Dad died a little over a year ago.  He had Parkinson's Disease.  He didn't have any dementia with that, but eventually lost his ability to swallow and speak clearly.  The loss of speech happened while he was in isolation in a nursing home, so our only communication was by phone and we couldn't understand him.  He died 5 days after their 60th anniversary.  Mom lives in IL in a facility.  She was managing ok, until she fell in June and broke her hip.  She spent the night on the floor, then went to the hospital, had surgery, and went to a rehab.  2 days after she got home, we found a pressure sore on her heel, bigger than a quarter & infected.  Back to the hospital and to another rehab.  Then home (exactly 2 months after her fall).  I've been part of her wound care team.  

All this adds up to my sister and I have been running all over the place, and spending a lot of time at Mom's and talking to her on the phone about things my sister can't follow.  My sister is NOT doing well with all this upheaval.  She referred to Mom as Grandma (to me) while Mom was in the hospital.  She is not a grandma!  Now my sister tells me how nice I was to "the ladies" when we leave Mom's.  Her language is really going - trouble with word finding and also saying words backwards - peels for sleep.  Reading and writing are gone, as is the painting she loved to do.  She gets lost in our house.  She can find her way to the bathroom at night, but can't find her way back to her room.  She wanted to go out the back door the other day and opened the freezer door instead.  There are other things, but you get the idea.  I'm pretty sure we're starting stage 6.  And I'm so stressed!  And the guilt/regret!  Every time I do something for Mom, it takes away from my sis.  And I can't spend the time helping Mom that I need to because I'm helping Sis.  

Luckily, the people at work are understanding.  I had to take Sis along a couple times when helpers didn't come.  And now, they're letting me take time off from work to visit MC's.  I started looking thinking I was planning for down the road.  Now I think we ready for it right away.  Mom and Sis do not know I'm looking, so I feel like I'm sneaking around.  I guess I am.  I'm lucky to have a good friend of ours to come with me and look.  Do you know that it's hard to find a place that will take someone who's not yet 60?  I was lucky to find one that seems good for a place you don't want to need, and is close to home, work and Mom.  And I know someone whose husband has lived there for 2 years and she's satisfied with his care.  We're going to visit another one just to have something to compare to, but I don't think I'll be able to find several to look at like all the articles recommend.  

I'm going to have to tell Sis - probably soon.  I'm not adept at lying, and she can often see through me.  And then I have to tell Mom.  I don't know which will be more upset!  I looked into the MC at Mom's facility, but they didn't think they're the right place for Sis.  They didn't say because of her age, but that's what I'm assuming.  That would have been easier, and Mom could have gone down to see her anytime she wanted to.

Well, that's my story from my spot between the rock and the hard place.  Thanks for reading!

M1

Glad you posted, what a tough situation. Overwhelming for anyone. Have you and your sister ever talked about memory care before? She sounds like she's had a fair amount of cognitive reserve, given her background she may take it better than you think. Here's hoping, anyway. Im so sorry, but it sounds like you're making good decisions under very difficult circumstances. Do keep posting and let us know how it goes.

IDrive3

Thank for the encouragement, M1.

You guessed correctly.  It has come up at least a couple times in the past 2-3 years.  I even asked her if she would consider being in the same building with Mom.  She thought that sounded ok.  I knew I wouldn't be able to keep her at home to the end, so I never promised that.  I did say something like we'll live together as long as we can.  Now that I've been thinking about it, moving her to a facility feels more and more like the right thing, and I just want it to happen.  She wants me with her all the time, but also expresses concern about my health and says, "I'm sorry you have to do this" when I help her with ADL's.  So, it will probably be ok, but I am genetically programmed to worry!

IDrive3

The 2nd place was not for us.  I got confused with the layout.  More residents per staff.  The first one has 13 residents in a "neighborhood" with 2 staff.  Is that a good ratio?  The woman giving the tour at the second place wasn't even sure how many residents in a neighborhood.  She regional sales.  Has been with the company for 6 months.  Her guess was about 10 residents per neighborhood with 1 staff, and then there is 1 - maybe 2 - staff that float between the neighborhoods.  They had a very pretty lobby though.  Made me think of those of you who caution against getting sucked in by the fancy stuff.  I'm going back to the first place tomorrow to talk to the person in charge of activities.  A different friend is coming with to be another set of eyes and ears.  I feel like I should hunt down somewhere else to compare to, but I don't have time to hunt down another place that takes people under 62.  I've reached out to ADRC and other resources and got nothing but a website where I can get a list of all the AL's in the county.  The place has a good reputation.  My job is in the same community and my boss has had interactions with the director and is impressed with her.  My friend's husband is well cared for there.  My sister can afford the place.

I'm not good at making decisions.  Can you tell?  Thanks for listening.