What should you do when siblings are minimally in mom's life but want maximum control of it?
Our widowed Mom is 83 years old in an AL facility. She requires help taking daily meds & some dressing help; buttons, buckles etc. She’s a solid walker who loves to walk 2 blks to a large shopping center for all her basic needs. Mom had said she feels she has memory problems & told her doctor, who said tests/scans will be upcoming. Mom does not forget names of family/friends, but frequently can’t remember where she puts new items (new scarf, BD card for friend,etc) or which Dr. she is being taken to see.
Mom has four adult children, all in our 50-60s. I live 2 towns over (40 min. drive), the one brother 1 hr drive away, baby sister in the next state (1.5 hrs away) another out of state sister 10 hrs drive away.
When Mom moved to AL 3 yrs ago (Dad’s passing) we all thought she could keep up with making her own appts, sibs or shuttle to drive her. But 3 yrs & several minor medical mishaps later, we are now helping re-established her with regular Drs/Dental appts. I’ve driven her to all but 4 out of @ 17 appts.
I regularly visit Mom or drive her over to our home for family lunch/visit, 2x weekly. In her town I spend 6-11 hrs; having a meal, her errands, country drives,etc. We have also taken her on several day trips to places she and Dad went to. I have grown a deeper love for Mom over these 3 yrs. At the start I would email my siblings to tell early memories Mom shared, give Mom’s victories in her 1st time living alone, etc. I was told by 1 sister the ‘cheerleader reports’ were not welcome. They also complained when I kept them informed of Mom’s med/dental appt results via email. We all have internet & laptop/devices. I see email as the way all have the same info and could refer back to in the event any one of us need to take Mom to a follow up appt.
Brother only sees Mom @ every 3 wks and tells her because traffic is so bad he can only stay around 3 hrs. (He only works part time, is now an empty nester.) Sister that lives 1.5 hrs away visits 1x month, for @ 2-3 hrs (because volunteers in her community). The sister who lives 10 hrs away has only visited Mom 4 times in 3 yrs (and had Mom for a weekend stay 3 times).
It appears my sibs are not very considerate to Mom. Brother helps Mom with her rentals: 1 house, 1 duplex, property mgmt oversees. Brother speaks rapid fire,throws out figures & real estate terms that Mom is not used to. He is smart but has no patience. I have had a Nurse and a cousin approach me to share their observations that when brother is with Mom she is noticeably more confused & agitated.
Little sister tries to boss Mom around. She decided Mom needed a journal to write things in and then got mad when Mom didn’t use it (Mom has her own system of leaving notes on the back of her front door & a large desk calendar for appts on her desk). She rearranges Mom’s furniture to what she thinks looks better then gets mad when Mom moves it back. That sister also wants Mom to stop walking. Even though 5 of the Nursing Staff have commented that she is a good walker, her walking routine is keeping her healthy and alert. I also asked Mom’s Dr. about the walking (30-40 minutes 5 x week) and he has no concerns with her gait. Sis wants Mom to participate in group exercise instead. She doesn’t realize Mom loves her independence.
My sibs complain constantly about Mom: “She’s losing it, she needs a personal caretaker”, “She lost the crossword puzzle book I gave her!”, “She repeats the same stories when I call”. I really have looked at past emails/texts I have received & the ‘positive Mom comments’ from any of them are few & far between. When I try to offer tips or share what has worked for me I have been told that I am being “Pollyanna”, or that Mom only acts that way with me. But all Care staff I encounter say Mom is a joy and so high-functioning.
I now I have proof of what I suspected –my sibs are conferring together w/o me about ‘how bad Mom is’ and want to make changes. They accidently used the wrong email thread for their Mom bashing.They want to see about getting her moved to a Memory Care facility; saying that when the farthest sister comes back to visit Mom in a few weeks that she will be in a position to share new 1st hand info. (Uh, what about my time with Mom?) Mom does not have a Med. POA yet, brother let it slip that he thinks this should be him. This from a guy that can only visit for 3 hrs & can’t take time off work for 3 days of the work week. I work freelance and can take Mom to appts any day, any time. It appears they do not want me to share my observations. And when I say Mom should be in on all discussions regarding her, the three of them all bristle.
I am shocked, I feel like I don’t know these 3 people anymore and feel like I need to protect our Mom. Thanks in advance for any help.
You seem to have things well in hand.
a) You are on the spot.
b) You are correct, in terms of best practice, on all the contentious issues - continuity of care, presentation of information, inclusion of your mother (I'm tempted to add "obviously!") in discussions about *her* care.
c) At the moment, at least, it is feasible for you to provide the level of support she needs. Do think about how it might best be managed as it grows, though.
I'm snorting on your behalf at the way Some People think they know better even when actually, if you add up the hours alone, they know approximately one tenth as much as you do. It is extraordinarily trying.
The brother who manages the assets - is he also in charge of payments to the ALF and so on? Does he have Power of Attorney? It sounds as though he needs to understand that no matter how brilliant a financial manager he may be, unless he can bring himself to communicate clearly and patiently with his mother he's of limited help to her. Maybe see if you can persuade him to try putting the information down on a nice clear diagram and give her time to get her head round it. Remind him that one day he will slow down, too, and he can just see how he likes it then.
Assuming you have already developed a good working relationship with your mother's doctor, next step is to get yourself formally appointed as her health care proxy. Then it's a done deal, and you become the decision maker. Best crack on with that as soon as you can, before these assessments take place ideally.
To be charitable, your siblings probably think they're looking ahead, which is sensible; and they may also be suffering from the fashionable notion that you, being the primary caregiver, are "too close" to see what's really happening, which is less so. I stubbed my toe on this concept from time to time, and it drove me to distraction. It is true that the primary caregiver is less likely to notice gradual change than people who only drop in from time to time, of course, but the idea that you're less informed is just tosh.
One ray of sunshine in the scenario is that if they're talking about upping her care level or providing one-to-one support, then they're obviously not skimping on cost. That's a blessing it really is worth counting.
But I feel for you about their attitude. It's heart-breaking. I wish I could suggest a constructive way to look at it, but I had to deal with something similar and never spotted any positives there either.
Meanwhile, you go ahead and enjoy your mother! And I'm glad you've got a helpful cousin around, too - I had one of those and she was A Rock.
Early on with my mom, my sister did more with Mom than I did... That was decided by mom, step-by-step, and sister. They have always been much closer as their life style is more similar. It also was a tougher time for me to help...I was going back and forth to another state to help out one of my daughters and work full-time. My sister would only call me to grip about mom or me. I really didn't want to dwell on the negative. I started taking Mom more and more often. I heard the same things said about me...too positive, don't see the bad, think things are better than they are.... It was frustrating but I just ignored it. I am a cup half full, she is a cup half empty. The more mom's disease has progressed, the more care I have taken. About three years ago, my sister was down to once a week for 8 hours and I was with Mom all the rest of the time; staying at her house at night and bringing her to my house during the day. Two years ago my sister decided she got too ill to care for mom (pneumonia) so I took over full-time. She never took back her day because mom progressed to a point that was too difficult for her physically. Over a year ago we moved mom to our house...my step dad visits 2-3 times a week. My sister comes about once every month or two. My brother has only seen mom twice since she has been here.
I think each person does what they can. We are all different so I guess we each react in our own way. My brother and sister love my mom just as much as I do and want her care for... We just each approach it differently.
I have Medical POA. I think you should at least get that so you can make decisions for your mom. Mom needs to give that to you while she is still able. Put your siblings on second after you. That is how my mom's is. Much luck.
I know you love your mom a lot and only want the best for her. I'm so sorry to hear about what is going on with your siblings. It is sad when the siblings can't agree on how to care for an elderly parent. I know so many of us share this challenge.
Are you able to call a family meeting? Meet a family therapist? Work with a social worker? Maybe an independent third party can get through to your siblings.
Or use an elder law attorney so that your mom gives you sole power for decision making regarding her care.
For myself, I regret I did not speak more plainly with my siblings. Even without their help and support, I should have gone to counselling or a support group. The daily care for my father was wearing me down but I tried to be super woman and do it all.