Thoughts about my sister

[Stella]

I don't really know if I am seeking advice here or just getting this all out and organizing my thoughts with my friends.

We found out yesterday that my sister's fiancé has broken up with her because of her paralysis. She and her son are devastated and this leaves them in a very precarious position. She was relatively wealthy prior to this, but as you can imagine, months in the hospital with limited insurance has taken all of her money. She now has less than $2000 to her name, which is good, in a way, as it qualifies her for state health insurance. She has no home because her home is extremely unsuitable for a wheelchair and while she is in the hospital, her son is floating between friends because his father can't take him full-time.

My mother is moving to Los Angeles and they are hiring people to taken care of her around the clock during the week while my mom is traveling for her job and my mom will do the weekend care. This is not ideal, but it is the only option right now. My mom is 63 and is a small woman, about 110 lbs, so she isn't ideally suited for this, but she is willing. My mom can legally pay rent, buy food, etc. and it doesn't count towards the income limits for state assistance.

If my sister can regain the use of her arms, this could work out in the long run, but depending on the outcome, we may need a different long-term plan. This is all really difficult right now because my sister is a fiercely independent person who very much resents being dependent on us right now. She has always kind of looked down on her upbringing and as a result, kept us at a distance, but her friends really can't take this kind of care on for the third time in three years (she has also had cancer twice). They are asking us to take the reigns, which is only right for us to do, but my sister is not going to be happy about this. I want to walk the line between respecting her feelings and, as gently as possible, reminding her that this isn't ideal for anyone involved and we do have to reckon with reality right now.

Ultimately, if she doesn't recover enough to be independent, she may need to see if she and my nephew can come back here. She would hate that idea and it isn't the time to mention it to her, but she and my mom could get a one-level house or condo in our neighbourhood and then my dad, Zach, my kids and I could contribute to their care. Zach has offered that if it came to that, God bless his heart, we could help pay her mortgage. We are fortunate enough to be mortgage free (and very nearly debt free) at a young age and my parents will eventually need to retire. There is a condo building right down the street that has 3-4 bedroom condos for between 100,000 and 125,000 with an elevator and parking garage.

Anyway, we are trying to figure out how to respect her wishes and still dealing with the fact that, if her care falls to us, we have to make that doable for ourselves. Hopefully I am getting ahead of myself and it won't be necessary, but its good to have a plan B. Thanks for listening to my rambles.

[crunchycon]

Stella - I don't really have much to add; your Plan B appears to be very sound, as I don't see a lot of other options for your sister. Once she gets over this fresh blow (won't comment on what I think of her fiance), would it be worthwhile for you, the family, to gently ask what she might want to do? There may be no answer, in which case, Plan B, but she may have some thoughts about her future that may bring a fresh set of insights.

My thoughts are with you all.

[SteveinMN]

Stella, I'm sorry that your sister is going through such a rough patch right now.

Having gone through something like this with a member of my family, I certainly understand the tightrope act you find yourself performing now. One suggestion I would make is that your sister find a therapist she likes with whom she can work through her issues with (in)dependency [EDIT] and possibly with fiancé leaving. Whether she likes it or not, this is her life now and perhaps for the rest of her days, and she needs to make peace with that before the anger and frustration of it all does something more to her physically and she drives away the very people who are trying to help her (even at cost to their own lives).

Another thing which might be good to know is that enlightened social service organizations (government, NGO, whatever) realize that being able to stay in place is much preferable to institutionalized care (nursing homes, etc.) for all involved. Nursing homes, for example, are extraordinarily expensive places to stay, and a lot can be done to assist homeowners and even renters in making their dwellings more accessible and in providing at-home health and rehabilitative services while still running below the cost of nursing-home care.

[puglogic]

Stella, nothing to add to the wise people above, but sending you hugs.

And thinking some very non-buddhist thoughts toward your sister's fiancee. Can't help it.

Take care of yourself too....

[razz]

May I suggest that you step back from the planning for a bit? Is there a knowledgeable social worker who can present the range of options that may be available for your sis to consider plus any other alternatives that may exist as she works through the transition:
- from independence to dependency, -
- from financial freedom to limited resources,
- from weakness to personal strength mentally (I have the last in the right order BTW)
so that she can retain her sense of autonomy and self-government of her affairs?

Please be careful not to let your emotions overwhelm the need for boundaries on what is reasonably possible and sustainable over the long-term. It is much better for an experienced professional to be the one who presents the harsh realities of the future rather than a family member and yet have sis retain some sense of personal informed decision-making. Sis will also more readily acknowledge gratitude for the support offered by family. If functioning with some family assistance is simply not doable physically, all need to face that fact and find ways to enable the sis face and choose the dramatically changed future.

If this sounds cruel, it is not meant to be but well-meant efforts not expressed objectively that are not well-received create so much unnecessary pain and regrets all the way round.

Best wishes as you work your way through this terrible experience.

[Miss Cellane]

Stella, hugs to you and your family. This is such a difficult situation to be in for all of you.

I'm basing what I'm about to say on the basis of knowing and having as friends a few people with disabilities--one is blind, another has CP, and other is deaf. And I have a 13 year old nephew who was born with a spinal column defect that resulted in quadriplegia. All these people struggle with dependence/independence issues; all of them strive to be as independent as possible.

As much as possible, let your sister make decisions. Present her with facts about her options and let her make choices, even if you disagree with them. Ask her for her opinion and volunteer to do research on her ideas. Then present her with more facts.

It is perfectly okay to say "no" to your sister, if she proposes something that just won't work for your family, immediate or extended. You may need to make the boundaries of what your family is able to do very clear. I.e., there is someone who can provide care on weekends, but only if Sis moves back home. If Sis chooses to remain where she is, then the family is willing to help out in other ways--and then list them. Those ways may not be what your sister wants, but she needs to face this reality before she can make informed decisions.

Even though your sister is now disabled, as long as her brain hasn't been affected, she's allowed to make stupid decisions. Since she has a child, you may need to step in to protect him, but you should allow your sister to make her own choices. You are allowed to tell her that the family can't bail her out if a particular choice goes badly--she needs that info in order to make an informed choice.

And most people want to be as independent as possible. If it does come down to her moving back "home," your family can stress that this is the way to make her as independent as possible.

My nephew, at the age of 9 months, stopped eating from a spoon. He'd still take his bottle, but refused to eat anything else. Since he was having a very difficult time gaining weight, this was a serious issue. Fortunately, one of his parents realized that he was at the developmental stage where babies start to feed themselves. So they hooked one of his fingers over the spoon as they lifted it to his mouth. Bingo! He started to eat again. For the next several months, he didn't eat a bite that he hadn't "fed" himself.

It's all about finding creative ways to allow as much independence as possible, within the limits of the person's disability. My nephew can't cut his food, but he can eat by himself now. He can also get food out of the fridge, microwave it, get it on a plate and get the plate to the table so that he can have a meal--all things that even 5 years no one thought he'd be able to do.

I hope for the best for your sister's recovery.

[catherine]

Stella, I'm so sorry to hear about this turmoil in your family's life.

I would agree with razz, that a third party might provide the unbiased logic and help that your sister needs to really objectively view her options.

And I agree also with Miss Cellane that the impulse for you, as the loving, compassionate person you are, is to want to step in and do what's right for her, but perhaps stepping back ("detaching with love") might be the move for the moment until your sister comes to terms with her disability and her needs for the future. I can't imagine what it must be like to have to grapple with so much change at once, although my mother had a similar experience--unexpected disability, husband dumped her, she lost everything, and it fell to her immediate family to pick up the pieces, so I do have a little bit of understanding as to what your family is going through.

Hugs and prayers to you.

[redfox]

Oh Stella, blessings, honey. You too deserve support. I wonder if there are groups for family members of those with catastrophic illness? I cannot add more to the good words above, except this: take care of YOU & I would encourage you to check in with your Mom about her self-care too. Primary caregivers go through a lot.... Find a great massage therapist! Which reminds me... I need to check in with MY Mom! She's the primary caregiver for my Dad, who is totally disabled. Thanks for the reminder... Please count us among your distance support team. Big, warm, gentle hugs, my dear.

PS... Besides the obvious observations about the former fiancé, he clearly was not ready for the sickness & health, better or worse parts of marriage. It must devastate her to have been bailed on like this... I cannot imagine leaving someone who is in a health crisis. It is a true test of a relationship, as I have found out in the last few months.

[Stella]

We do have a social worker helping us in this process, thank God. She has given us a lot of valuable information. I am not talking to my sister about a lot of these thoughts at moment. More than anything we are getting mentally prepared ourselves for what this might entail on our end based on what the doctors and social workers are saying.

My mom moving to L.A. has already been set in motion, with my sister's full participation in the decision making. The social worker isn't sure how much money will be available for what or how long it will take to process what money there will be available and she admits that California and L.A. County is in a bad way itself financially and services are stretched. My sister is currently unable to pay her rent by herself. My nephew can't be floating around homeless at 12 years old, and my sister is going to be in the hospital until at least July, so there is some real sense of urgency to this first stage of the plan. Honestly, there is a real danger that if we don't step up to the plate she will end up in a state-run long-term care facility. That is what we have been told and my up sister pretty much completely panicked at that idea.

Right now my sister sees my mom as the solution, long-term, because she is, appropriately, focusing on her own needs. What I am saying, I think, is that I don't see my mom being able to do that, realistically. I'm not saying that we would make her move out here. I am saying that depending on my 63 year old mother, who's health isn't the best, isn't a realistic option and her friends have confided in me that they are unable to continue assisting at the level they have been. I hope it doesn't come to this, that she is able to regain her independence enough to continue to live where and how she wants, and i will do literally everything I can to help her. But, if that doesn't happen, I don't want to be caught in a panic because no one had a plan B. That is essentially what happened when the fiancé left. All plans had been made with him in mind and its been a scramble to find solutions. Right now, plans A, B and C all involve my mom working full-time in perpetuity and being primary caregiver 24 hours a day on the weekends. I think we need to have other options to present to her someday in the next year or so, depending on how the dust settles. It's been frightening how fast everything has fallen apart and how slow and expensive solutions have turned out to be. We have been exploring many different avenues for getting her what she needs, but its a lot to navigate. In the meantime my dad and I are going to take turns going out there and helping my mom and my nephew. My mom admits that she is not capable of doing this forever, but she doesn't feel like she has a choice.

I do think she needs to spend more time with a therapist. She is in a rough place emotionally and it's hard for her to both deal with the daily physical therapy and effort involved, process the huge amount of grief she is going through and make the practical decisions. I can't even imagine having this kind of adjustment to make. I imagine this is going to take a long time to get to a place where every thing is settled. It breaks my heart that she is going through this.

I should look into a caregivers support type of thing. This is a lot to juggle from 2000 miles away with five little kids and my daily duties. A massage sounds lovely too. Thank you for all your wise words! You guys are great.

[Miss Cellane]

Stella, here are two links that might be a bit helpful.

For your sister, New Mobility: http://www.newmobility.com/. The people on the forums there pull no punches about life in a wheelchair.

For both your sister and you and your family, CareCure: http://sci.rutgers.edu/ There are forums there, one is just for caregivers.

Frankly, if your sister can regain any function in her arms, she probably won't need 24 hour care. Many quads live relatively independently, with a caregiver coming in twice a day for 2-4 hours, depending on the level of care, PT and personal care needed. But otherwise, they can live alone, without live-in aides. Modern technology has really created many opportunities for people with disabilities to be independent.

It's so hard to be in this in-between area that your family is in right now, not knowing what the final outcome of your sister's illness will be.