View Full Version : Thoughts about my sister
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
6-6-13, 10:56am
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.
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.
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....
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
6-6-13, 11:36am
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.
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.
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.
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
6-6-13, 8:33pm
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.
Stella, I have no words, but prayers for you all.
iris lilies
6-6-13, 9:28pm
This is so huge and there are so many facets to it. A couple of things: the fiance kind of did everyone a favor by bailing immediately. He recognized the enormity of the problem and honestly assessed that he couldn't do it. It would have been worse for him to hover around, saying he'd do care, then not doing it, then your family members having to rush in to solve deferred problems, then him getting in the way with his ego, etc etc. It may be a blessing for him to be out of the picture if he was incapable of stepping up to the job.
What your sister is going through is huge, I can't imagine it. Why the H8ll can't her son's father take him full time? ugh. That poor kid.
The other thing is: I've been wondering how your wealthy grandparents are considering this situation. If there is a time for the elder generation to offload funds, this is it. There are some reasons why that may not be an answer but I would hope they are seeing the unique and tragic aspect of this, a situation where resources can help a lot.
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.
Stella, to speak plainly about this, no matter how much your mom may want to be the solution, she is not. If it is questionable that she has the strength and stamina to care for your sister now, things aren't likely to get magically better by the time Mom is 68 or 73 or, God bless her, 83 or however old she'll get. While there still is some question as to how much your sister will be able to do for herself, right now the answer is 'nothing' and plans have to center on that worst-case scenario.
One thing I can tell you from DW's experience as a social worker is that the phrase "safety and security" will go a long way to determining what will be done. Your mother, your sister, your nephew -- all need to be safe and secure, and assistance will work in the direction of making that happen. If it means that your sister needs a Personal Care Assistant (PCA) for some of the hours your mother covers over the weekend, so be it. If it means providing a Heuer lift and instructions on how to use it so that dead-weight transfers are avoided, so be it. If it is not possible for your sister to live at home safely as it is, they'll look at how it can be made safer, and, if it's still not safe enough, other options (like a nursing home) will be considered. But right now you don't have enough information about your sister's condition or California benefits to be able to flesh out a viable Plan B.
There are plenty of sites out there like this one for particular diseases and most of the ones I've seen of that type have a forum for caregivers. There probably are sites devoted completely to caregiving, though there is something to be said for specializing in the particular illness you're working with. I would be willing to help you identify some forums or local resources which might be helpful; fee free to PM me.
flowerseverywhere
6-6-13, 11:34pm
I hope someone has gotten the social security disability paperwork in order for her so as soon as she meets the time criteria it can be filed. Also, food stamps for her and her son may help enormously.
I wish you and your family luck in whatever you end up doing, and my heart breaks especially for the teen who is way too young to be on his own.
((((((Stella))))))
Best wishes to your family in finding a solution.
I know that when my mom was about the age your mom is now, she and her sister were the caregivers for their father in the last month of his life. It took her months to recover from the exhaustion of that one month. That was likely more demanding than caring for your sister, but it was also only one month.
I hope that a solution for a stable life for your nephew is found very quickly. That sounds like a very precarious age and stage of life for so many things to be tossed up in the air suddenly. Obviously he will still be worried about his mother's health, but having a stable living solution is very important to overall mental health.
Stella, I'm so sorry about the psychic pain, anxiety and planning you are all going through. I say let the ex-fiance go his way, he can't cope and it's better not to have his ambivalence in the mix. I'm not convinced he's a "bad person". What would we all do in a situation like that? I'd like to think I'd stick in there, but I wouldn't know until something like that happens. Very hopeful wishes for you all to find a workable solution. This is a priceless gift you all are giving to her and I hope she will be able to realize it. Take care.
((((((Stella))))))
Best wishes to your family in finding a solution.
I know that when my mom was about the age your mom is now, she and her sister were the caregivers for their father in the last month of his life. It took her months to recover from the exhaustion of that one month. That was likely more demanding than caring for your sister, but it was also only one month. ...
That was my experience as well. Caretaking is grueling--mentally, emotionally, and physically. It helped me to understand the concept of PTSD. Your mother can best provide love and emotional support at this point.
Gardenarian
6-11-13, 3:23pm
Stella -
as always, I am so impressed by your generosity of spirit and clear grasp of the situation.
As someone who has been more often in your sister's shoes (or near enough) I know how frustrating - infuriating - it is to have your body fail and to become dependent on other people.
I don't have any advice, but I think you will come to the right choices. I sure wish I had someone like you on my team.
Miss Cellane
6-11-13, 4:29pm
Stella, to speak plainly about this, no matter how much your mom may want to be the solution, she is not. If it is questionable that she has the strength and stamina to care for your sister now, things aren't likely to get magically better by the time Mom is 68 or 73 or, God bless her, 83 or however old she'll get. While there still is some question as to how much your sister will be able to do for herself, right now the answer is 'nothing' and plans have to center on that worst-case scenario.
One thing I can tell you from DW's experience as a social worker is that the phrase "safety and security" will go a long way to determining what will be done. Your mother, your sister, your nephew -- all need to be safe and secure, and assistance will work in the direction of making that happen. If it means that your sister needs a Personal Care Assistant (PCA) for some of the hours your mother covers over the weekend, so be it. If it means providing a Heuer lift and instructions on how to use it so that dead-weight transfers are avoided, so be it. If it is not possible for your sister to live at home safely as it is, they'll look at how it can be made safer, and, if it's still not safe enough, other options (like a nursing home) will be considered. But right now you don't have enough information about your sister's condition or California benefits to be able to flesh out a viable Plan B.
There are plenty of sites out there like this one for particular diseases and most of the ones I've seen of that type have a forum for caregivers. There probably are sites devoted completely to caregiving, though there is something to be said for specializing in the particular illness you're working with. I would be willing to help you identify some forums or local resources which might be helpful; fee free to PM me.
Stella, I really agree with this. Your mother should not, and probably cannot, be Plan A, Plan B and Plan C. And it's not fair to your mother and father for your sister to expect your mother to move away from your father on a more or less permanent basis. Nor is it fair to you or your father for you to continually have to leave your responsibilities at home to care for her son.
I completely understand that you want to help. That in many ways you *need* to help. And this is a terrible thing that has happened to your sister.
But that does not mean that three whole families should be separated and uprooted in order to deal with this problem.
To put it bluntly, if your mother were dead or otherwise unable to care for your sister, there'd be a different plan.
I've watched my brother and sister-in-law over the past 13 years since their son was born. Six months in NICU, then finally home. With 16 hours a day of home nurses, needing a trach tube suctioned every 5-15 minutes, needing oxygen most of the day, then only part of the day. Needing constant physical, occupational and speech therapy. Needing to have almost every single thing done for him for years, and even now that he's attained a degree of independence, that is only because someone else can set things up for him. And there's still a lot he can't do--can't put toothpaste on the toothbrush, can't get dressed by himself, can't put in his hearing aids, can't transfer to or from his wheelchair. Because he's a child, there's a fair amount of money available for wheelchairs and lifts and the like--but it is still a physically demanding job caring for him.
They have home nurses 16 hours a day. One goes to school with him--if the nurse can't make it, a parent has to stay home with him, or go to school with him. If the night nurse can't make it, one of the parents has to sit up all night with him, to make sure he doesn't stop breathing. Nephew has a one-on-one school aid to assist in making through the school day. She puts the laptop on his desk, gets out his books, retrieves supplies and collects papers and things he can't handle.
When their other children were little, they had to hire mother's helpers to watch them, so that SIL could care for Nephew and not worry about what the little ones were getting into. Family had to help out, as well--even with 16 hours a day of nursing care. One aunt came over weekly to watch the other kids, or take them out to do fun things they couldn't do with Nephew. I spend 2 weeks a year (or pretty much all my vacation time) out there, so that DB or DSIL can get away. I haven't actually gone on vacation in 12 years.
Both my brother and SIL have experienced burn-out several times. As a family, both sides of the extended family work together to make sure they can away on vacations. Rarely can they go together, because of my nephew's needs. We can usually get support together so they can go away over night on their anniversary (that requires hiring an extra nurse shift and having at least 2 other adults in the house at all times), and then each of them can maybe get one week of vacation away from their home each year, usually broken up into a couple of separate trips. If they don't get that, things get ugly. When one of them goes away, one of the aunts (that includes me) moves in. Basically, while we help with all three children, we are there to watch the two younger ones, so that if Nephew needs to be rushed to the ER, there's an adult at home to care for them.
And this happened even when Nephew was small enough to be easily carried and young enough not to be disobedient. Caring for an adult is just going to be harder, mentally, physically and emotionally.
I would strongly urge that whatever plans you make, that you all call them temporary plans. Yes, Mom will go out to take care of Sis--temporarily, until things settle down. Yes, you and Dad will go out to care for your nephew, temporarily, until better plans are made. Sis should not be led to expect that she'll get exactly what she wants. She needs to recognize that her wants and needs are not the only ones that must be taken into consideration here. Your family should not make promises now, in the heat of the moment, that they may regret 4 or 5 years from now.
A caregiver who turns resentful of the demands made on him/her is not going to be healthy for either your sister or the caregiver.
Okay, enough of the preaching. It's just that I sense that your family is willing to do whatever your sister wants at this point, and I'm not sure that's going to be good for any of you. Please consider the ramifications of the decisions your family will be making, not just for your sister and her son, but for you and your husband and children and your father and mother. You are all just as important as your sister. You all deserve to be with each other and to have time for each other.
And on a strictly practical note, I mentioned your sister's situation to my brother. He said that you should check what options are available for your sister both in California and when you live. If she's eligible for Medicaid (I think it's Medicaid, but I always get that confused with Medicare), the individual states have vastly different aid available. One reason they've stayed in snow-bound up-state NY is that they get great benefits for their son. They've explored moving south, but haven't found job openings in states that have similar or equal benefits. It is possible that your sister might get better benefits if she moved home. It's at least worth checking into.
And I'm sorry if I've said things that will upset you. That was not my intent. I just hope your entire family can look at the big picture and work with your sister to make plans that allow all of you to live happily.
SteveinMN
6-11-13, 10:48pm
Miss Cellane, thank you for providing very specific illustrations of What Life Will Be Like. For the sake of those involved, I am not willing to get very specific about my family's situation, which also involves an elderly woman caring for an adult of very limited abilities. But the issues of mounting care needs, capabilities related to everyone's deterioration with age and illness (the disabled person and the caregiver[s]), caregiver burnout, loss of the caregiver's friends and interests -- they're all real and must be considered as part of any long-term care plan.
Stella, I also hope I did not upset you. But I have been down that same road myself -- though not nearly as far as Miss Cellane and others here -- and can report that the scenery likely will not be what you expect. This is very new to all of you. Please make sure that you consider the sustainability of any action you take.
Speaking of Medicaid and health coverage, that would be something to investigate before any long-distance moves, as it seems to me I've heard of residency requirements - a certain amount of time in a state before being able to obtain it.
I'm so sorry this situation is affecting so many - adding some prayers for decisions ahead.
Adding my prayers as well, Stella and extended family.
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