Nothing is enough!

Saya_G

My mom is in moderate to late stage dementia. Overall healthy, with many of the same issues you are all dealing with - but for the most part, with meds, manageable. It is my sister that I am worried about, she is Mom’s full time companion, but she is burnt out. She is showing signs of early onset, but it could be stress. I set up, and handle all of her and my mother’s medical appointments, I told her that we needed to address her ‘forgetfulness’ at an upcoming doctor’s appointment. So when we went to her doctor’s I brought up the subject (the primary reason for the visit was that sis had slipped and threw her back out). 

Concerning the memory issue ( she forgets appointments, repeats often, doesn’t remember conversations, etc.). After addressing sis’s back issue, the doctor gave her a basic memory test: remember the following three words..., draw a clock face, etc. Sis did pretty well, only forgot one of the words, but overall okay. Doctor said she would refer her to a neurologist for more through testing, if we wanted. Sis said okay (we are still waiting for the referral). After the appointment, all went well my sister and I chit chatted on the way home - no apparent issues with my having broached the subject of her forgetfulness.

That until two days later, I hadn’t heard from her or my mom so I called, sis let me have it with both barrels - She said that I had made her feel stupid, she was apparently greatly offended by the clock test! Then she said all I wanted from you is a break! I explained that the test was standard for memory issue concerns, and that I hadn’t brought the topic up to be mean to her. She asked if my concern over her memory was that the only reason I had set up the appointment? I said no, the appointment was set up due to her slipping and hurting her back - she didn’t even remember that the doctor had addresses her back issue and had even sent out a prescription for her (obviously she had not picked up the meds - which supports my being concerned about her memory)!

I get that she is burnt out - we both are - but I do all that I can! I have a husband with needs and a heart condition, two grandkids that live with me and ( I hate to admit) an adult son whose problems always seem to end up as mine! Besides doing my mom’s meds (ordering, dividing and put them into packets so that all my sister has to do is open a packet, and hand mom her meds - I even set up alarms on my sister phone for her so that she doesn’t even have to watch the clock - or worse forget), I handle both my sister and Mom’s medical appointments, I drive them to every appointment- one that is a 200 mile round trip, the shortest is a 100 miles round trip (their insurance isn’t taken by any local docs). Between the both of them, most months they have at least three appointments, sometimes up to six; I handle my mothers accounts, I give my mother her baths (at my house because I have a walk in shower); and because my sister refuses to, I clean my mother’s dirty toilet! Which I’m sure you all know is a mess! 

I’ve suggested that I take mom shopping or to lunch to give my sister a break, but my sister then wants to go too! So that doesn’t count as a break! I have gone to their place and stayed with mom to give sis a break too, probably not as often as sis wants or maybe even needs - but it’s not like I am not helping in other ways!

I told sis that I’d be glad to have mom come to my place and stay for the day - mom wouldn’t mind that option at this point, and could easily handle the change of pace herself - besides, if mom got upset or just wanted to go home, I could always take her home if needed. My sis instantly says that would that would be too hard on mom - yet they can go to bingo on a regular basis)! So that is apparently not an option. When I asked sis what it is she would like to do or where she’d like to go, she says, what can I do with Covid out there? 

Nothing I suggest is what she wants to hear! I’ve even suggested that maybe it is time for mom to go to memory care - sis will sometimes consider that as an option - but, again, Covid is a concern. Another concern is that, since living with mom my sister doesn’t pay any bills, we own their residence, and we do not charge them rent - but mom does pay all utilities. My sister is on SS (as is my mother), but has no other debt, so I think she could afford the utilities if mom goes into memory care, but I think my sister worries about paying the bills if mom goes into MC. Utilities are not a lot, she’d still have 900-800 or so each month to cover groceries and other spending. 

I know my sis loves my mom, even if she is burnt out, I love them both - but there is only one of me! I am so tired of being everyone’s fall back - both emotionally and financially. 

Ugh!

RobOT

Saya, this really sounds frustrating.  It also sounds like your sister is suffering from the usual caregiver trio of overwhelmed, tired and guilty.  I don't know how old she is, but it also sounds like you might be right about some cognitive changes.  If that was me--and it is, sometimes--that anger directed at you would really be fear that I'm going down the same road as Mom.  That living in the moment to the extent that she forgets meds for back pain is very suspicious, too, but also could be an indication of how much she neglects herself in favor of you mother.  Difficult stuff.  For myself, I would try to gently urge your sister to see the neurologist, and maybe tell her doctor about her response.  Maybe they have another angle they can try.  Hope you can get some help in this.  Good luck.

M1

So Saya, it sounds like you are trying to care for two dementia victims, really, and from a distance. How distressing to realize your sister really can't function as your mother's primary caregiver any more-isn't that where this is headed?