Looking for guidance(5)

Saya_G

My Mother has dementia. My sister promised my father on his deathbed that she'd make sure mom was taken care of. At the time sis lived across the Country from our mom. But then Sis's situation changed and she retired before she planned. She was set up okay where she was. But she decided that it was time, so she sold everything, came across Country and moved in with our mother. They have always had an adversarial relationship. They love each other - but our mom was very young when she had my sister. Not sure if that was the issue, or if their personalities just clash.

Honestly, I think sis moved here before she needed to, I think she needed to be with someone - she is a widow and doesn't have a relationship with her only child (that's a story for somewhere else). Anyway, mom and sis both love bingo and casinos - so all was good for the first several years! Then my mom was diagnosed with dementia. At last visit my mom's last neurologist said that mom was moderate to severe (that's been 6 plus months ago; hospice nurse says she is not that far along (about a month ago).

Since covid hit they have been pretty much locked in. No more bingo, no more casinos, no friends other than each other. Not a good situation.

I have a lot going on in my life, some of which is very stressful! Still, I handle both of their medical appointments, I clean their house, buy supplies and deliver them and try to stop by 3-4 times a week (a couple of hours each time). I have things going on that are unrelated to them, that's a story for somewhere else too.

I have offered to give sis day breaks - she says "to do what, go by myself and sit somewhere?" She can't seem to think of anything to do on her own, other than complaining that she missed going to bingo. I've made several suggestions, she is not interested! But she wants more and more of my time - I know she just wants company! She wants socialization! I get that! I do the best I can! But I can't do any more right now! 

My sis now has memory issues too. I had her tested, she does not have dementia - per her nuerologist.  She has faux-dementia - caused by other factors - perhaps depression? He put her on anti-depressants. That seems to have helped some - at least her complaining is in a friendlier tone. Still she deserves to have a life! She is 72 herself, she doesn't have tons of years left! 

The only option would be to place mom in MC to free her up to do more, but mom is her life! She complains, but I'm not sure she would be any happier once mom is not longer her 24/7 responsibility. She is and always has been a complainer! So I am just a a loss as to what would be best for the both of them.

Any ideas or suggestions?

LicketyGlitz

Hey, Saya, have you contacted the Alzheimer's Association in the area? I know so much is still shut down but there might be a dementia activity or two making it's way back to life. Also, is there a local paper that has an events column for stuff happening in the community? That was a way I was able to find lots of activities for my mom and myself - Fall Fairs, Octoberfest gatherings, quilt shows, harvest celebrations, local concerts or arts events - a lot of stuff was outdoors, or we could at least sit in our warm car and observe a gathering if it was too cold out!

See if your sister is interested in anything like that and then go through the paper with her during one of your visits! My mom was very mobile - not sure if that's a challenge on your end, but if not, send 'em out to taste test pumpkin beers! Or kick up leaves! Or attend a local high school football game - even if it's just the kickoff and then home to warm cocoa it was an outing.

Good luck to you, your mom, and your sister.

Saya_G

LicketyGlitz,

Thanks for your reply. In the past, I have called our local Senior Center, they have activities for senior folks. Bingo being one of the activities (a big plus)! They put mom on a wait list (since she has dementia, I or my sister would need to come along and sit next to her). Mom has been on the list for awhile now. I called again yesterday to check her status - they said she was still on the list, might be another month or longer. Due to Covid they are limited in the number of folks that can participate - all must sit 6 foot apart. I asked the gal I spoke with if she knew of any other activities. She recommended a new yoga workout offering for older folks. My mother is so limited physically right now that I doubt she could participate - besides the fact that when she was in physical therapy she did not like it and refused to do the work (hence, one of the reasons for her physical limitations).

I've suggested local activities to my sister in the past, she is not interested. As I write this I guess I'm coming to the conclusion that, as far as my sister sees it - my coming is their only acceptable 'activity'. She refuses to drive any distance - which has put a greater burden on the use, gas and miles on my car - not counting the extra drive time I have to do! (I have other responsibilities - she does not!)

We live about 20 miles apart. Depending on where their doctor's office is, that distance between adds 80 miles to our total drive time for the day. That is, I drive to their place, drive back to the main Interstate (which is about 1/2 miles from my place), then 'start' the trip to their doctor - at that point I've already driven 40 miles! Now add the miles to their doctor and back, and then the round trip to take them home (they have crappy insurance - some doctors that accept their plan are miles and miles away)!  My sister could drive, but always says she would get lost so it's best if I drive. I've literally added 40K in miles to my car over the past 3 or so years of taking them to their doctors. One doctor is about 75 miles from my place!

They needed covid boosters.  So I had set up their appointments at our local CVS for yesterday, I am very busy right now, so I told my sis that she needed to drive herself and mom over to my place, then I'd drive them to the appointment from my place (about 2 miles further). As I said, sis often claims that she can't drive because she doesn't know her way around - yet she seems to know every hole in the wall bingo in our area! We live in a small to moderate sized community - the distance between our homes is basically rural - easy drive. When she arrived she proudly exclaimed that she had droven to save you from having to drive!! It struck me wrong, I said "what? You saved me from driving?" She just looked at me like she didn't get my sarcasm - I wasn't getting a booster!!! How was she saving me anything??? 

Comments like that make me feel like she doesn't get all that I do for them! Yes, she thanks me - but she could do more to make it easier on my helping them. I know - she does a lot! I get that, but it is not easy 'helping' people that are so set in their ways that they constantly expect that I do as they want - I've always thought that if you need help, the giver of help gets to decide how they help! 

I love both of them - but they are not social - they just sit and wait to be entertained! Add that to their negativity - which is not a new part of their personalities, I am just so frustrated! And Covid has not helped!!

Sorry to vent - I guess I just needed to say it!

LicketyGlitz

Oh my gosh, Saya, venting is the only thing that got me through dementia family caregiving! Vent away anytime you need too.

After reading your reply the only other thing I can think of is online bingo! https://myfreebingocards.com/virtual-bingo

So, if this was me and my sister I'd tell myself I got a couple of choices - tell her kindly, firmly, directly that I am beginning to resent the constant reliance on my chaffeur and entertainment talents and that initiative from her would help me out greatly - or - swallow my anger and passive/aggressively put up with it tossing out some occassonal snide and sarcastic comments that my sister either wouldn't pick up on, or pretend she didn't pick up on.

Our dementia journey with our mom was a 5-year stint, looking back I can tell you my sister and I utilized both strategies (we're very good at snide!), to varying degrees of success and failure each time. We had periods where the other person wasn't doing enough, or wasn't doing enough right, or wasn't etc. etc. etc! Maybe this is just a sister thing for families like yours and mine.

Mom's gone and we're still sisters - equal parts supporting and irritating the crap out of each other. I hope you and your sister do better than us!

mommyandme (m&m)

In my city we have a volunteer ride service called “Saints”. No cost to clients for rides to doctor appts, grocery etc…It caters to the elderly.  Is there anything like that in their town?

Your sister and mom could catch rides with Lyft or Uber.  As I see it, that would be a much better way to spend your time and money.  You can set up the ride from the comfort of your home. 

Hopes for some peace being sent your way.