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optimist1 Asked November 2017

How can I support my sister who cares for my mother in mom's home?

I live half-way across the country from my sibling who cares for our mother. Mom has had mobility issues for over 1 year (cannot stand or walk on her own, needs a caregiver for mobility, cannot prepare a meal, do any of her daily cares). Mom has always insisted in staying in her home so although the house is falling down around her and in ill-repair, that is not stopping her from staying there. My sibling, who has full time job, recently moved in with mom as she hadn't been to her own apartment in nine months as mom needs to get up every 8 hours. Although I feel tremendously guilty for the work my youngest sib provides to my mom, both are in complete and utter denial of mom's fraility and non-sustainability of the situation. My sib can never have any respite, as mom refuses to have any of her other children assist her with mobility. This has resulted in (what I believe to be) severe care-giver burnout of my sib. I have gone to visit on several occasions but always with conditions before I come: 'don't say nursing home', 'don't upset mom', 'please don't clean the house but just sit and visit'. I am afraid for both of their futures. I have tried to gather knowledge as to next steps in the event my mother falls, is taken ill, needs advanced medical care. No one has done any planning and don't seem to be worried as to the future. I have tried helping financially, with legal advice, finding geriatric care manager and all my help has been turned away. But I am made to feel tremendously guilty when I am not present to give my sib a break from the constant caregiving. I am waiting for her to tell me 'I can't do this anymore' but feel we would be in a real bind trying to broach the subject with such short notice. Respite care is out: my mom would never allow a stranger in her home and was nearly combative when needed to be briefly hospitalized for a day in the summer. I have a family, live 1500 miles from them, work full time but still feel the guilt of not being there to help. I also have a middle sib who lives closer and does 'token tasks' for mom's enjoyment but is mysteriously absent when asked to do more. I am so overwhelmed...

jeannegibbs Nov 2017
chdottir, not getting a first choice is a consequence of failing to plan ahead. I wonder why we try so hard to encourage our children to accept the consequences of their actions, and also try so hard to negate the consequences of our parents actions?

chdottir Nov 2017
It sounds like you really are doing everything you can.

The only think I can recommend is get your Mom's name on a waiting list at someplace you like (or that the geriatric manager can recommend). That way you at least have a good option available if there is a crisis. I would think you could get her name on the list without her or your sister being aware of it, as long as you are the contact person.

My mother, who in most ways is very cooperative, wasn't willing to consider assisted living a year ago. So trying to honor her wishes, we did not put her name on the list. Things went downhill rapidly this summer, now the waiting list is long, and we will not be able to go with our first choice.

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optimist1 Nov 2017
Thank you jeannegibbs and pamstegma for your kind words. The problem is that my sister seems to be driving a wedge between my mother and me. Yes, they have always been close (she is the youngest) and their relationship has to be strengthened in a way by my sister's care for her but I think it is bordering on the dysfunctional at times. I've read that often during these difficult times, old recurring themes of the earlier family issues seem to be replayed. For us it is that there was never any tolerance for difficult conversations, instead sweeping any of these issues away and rarely dealt with head on. I am trying to not be judgmental and to put myself in their position. I know my sister is struggling, although she won't come right out and say it for sure. I think her frustration is coming out in finding fault in us when she might not know how to help herself (but is also rejecting of the help offered). 

jeannegibbs, At this point I don't think she is unsafe, although she wouldn't be able to leave the home if there was a problem, completely immobile.  She refuses offers to have anyone check in with her (or set up LifeAlert, etc); she is rejecting of any services she is entitled to and speaks of how people could take advantage of the situation.  She has cell phone and can call for help and sis calls her from work to check in but I feel ever vigilant for that phone call you don't want to receive...  I think this is a mixture of depression, loneliness, stubbornness but sometimes difficult to decide if there is some early dementia as well which complicates the relationship she has with my sister.

pamstegma Nov 2017
optimist1, you have done all you can. Yes, this will reach crisis point when the caregiver burns out or ends up hospitalized herself. Don't confuse regret with guilt. Certainly you regret their situation, but you have done a lot more than most would.

jeannegibbs Nov 2017
First, ditch the guilt. Or at least stuff it far into the background where it won't affect your decision-making.

Your mother's mobility issues are Not Your Fault. Your mother's refusal to accept help from anyone else is Not Your Fault. Your sister's refusal to plan ahead is Not Your Fault. Any guilt you are feeling is totally unearned. Give it up.

You have tried in very practical ways to provide assistance. Good for you! You can't imagine how many caregivers on this forum would LOVE to have a sibling hire a care manager or offer financial assistance.

It may take a disaster for anything to change. The plumbing stops working. Mold appears on the ceiling. Mother falls and has a serious injury. Sister gets seriously sick. Things may not change until something they cannot ignore happens. This is sad and frustrating but it is not uncommon.

My mother lived with my sister for a little over a year. She had mobility issues and also dementia, both of which got progressively worse. When Sis said, "I can't do this any more," the rest of us mobilized and had Mother in a nursing home within 3 weeks. It was complicated because Mother had a serious infection at the time. But it did work out. More time to plan would have been lovely, but things can happen quickly in an emergency situation. Lay that worry aside. What needs to happen will happen, but probably not until they are forced to accept it.

Is your mother safe to be left alone while your sister works? How does that work out?

If anyone is trying to send you on a guilt trip, refuse to pack.

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