anger, sorrow over being a sibling caregiver

I'm wondering if there is anyone out there in the same or similar situation as I. My sister (and we were really not very close growing up, as she is 10 years older than I) is in end-stage, and I feel I have "lost" my life being the sole person coordinating her care. I do get help with many aspects, such as her married son doing bill-paying (check-writing, that is), and a friend of hers doing a bit of the filing; but I am the contact person for everybody and everything and I am just so tired. I have a wonderful husband, church family, and immediate family, but basically it's me. Our extended family had EIGHT major crises this past summer, and I had to quit my job because then my mom was gone, who was one person who could help me fill in gaps in care when an aide didn't show up. We have a combination of CHHA, CDPAS, and private-pay aides, 24/7 because my sister is divorced and lives alone. I live about 25 minutes away, and have several others on my care list at this time (the term 'SANDWICH GENERATION" is SOOOO apropos). In addition,, I also am wondering how one can be sure they do not have the familial type of ALS. I have a brother who died of Spina Bifida (which is a neural tube defect); a father who died of heart disease but he had a neurological condition which crippled his hands later in life; he had been mis-diagnosed with ALS, and then mis-diagnosed as MS. And now my sister does have ASL and is nearing the end of her journey. When I get cramps in my feet and legs or am tired out and my legs feel so heavy going up the stairs at night, I wonder if it's coming for me, too. 99% of the time I am full of faith and know that no matter what happens I can depend on Him, as I can look back and see the strength and support He's given me these past 4 years of my sister's illness midst the other demands of life, but sometimes I am just tired, and angry that the behavioral changes in my sister are making these final months so very difficult. She resisted EVERY, EVERY piece of equipment they offered her, until it was absolutely past the time she should have been using it, and did so much damage to her body because of that: broken leg, twisted ankle that threw a blood clot that went through her heart and landed in her lung. And of course, every time she hurts herself it further affects our family and sends ripples of need out to all involved with us. In my head I understand her "need" to do this resisting, but in my heart and gut it hurts and I just want to lash out at her sometimes. I tell myself to always imagine what it would be like to be in her shoes, but to be honest, on the days when I wonder if I will get it, too, I feel like I just want to live my life now instead of being on call 24 hours a day.
Thanks for letting me vent. If anyone has had these feelings, please post.

By Cynthia3
Posted February 28, 2008 at 10:52 am

Barb,
It's hard to imagine the amount of responsibility and caregiving that goes along with assisting a family member during their journey with ALS. Add to that, the many other obligations of life and it seems there just are not enough hours in the day. Those who have experienced caregiving to this level have a good idea of what you're talking about. The local ALS Chapter 315-689-3380 is a resource that can assist you in locating potential additional assistance for yourself and your sister. Your concern over a possible family link regarding ALS is understandable. There is an ALS gene study going on now that is surveying patients with ALS and their relatives with regard to sporadic or genetically-linked ALS. The study involves drawing a small amount of blood from the participants at their home, and completing an environmental survey. If you are interested, the Chapter offfice can provide more information. Don't hesitate to call the Chapter in an effort to locate additional assistance. If you prefer, please call me directly at 904-504-6329, Cynthia

By RochesterBarb
Posted February 29, 2008 at 11:15 am

Dear Cynthia,

Thank you for your kind words and ideas. I would very much like to have that blood test but I'm a bit embarrassed to ask our ALS clinic, as I did mention it to the nurse there and she told me I shouldn't worry... that spina bifida, although nerve-related, probably has no link. Is there a way for me to get set up for it through you? I live in Rochester, NY. The ALS clinic here has been just wonderful, but I hate to ask it again for fear they will think I'm a hypochondriac.

As far as additional resources, I have tried many times and many sources. The patients who come to the support group all have loving spouses attending to their needs, OR, the patient lives with someone such as a daughter. ALL the other single people who live alone in our county end up in nursing homes or assisted living. My sister is too near the end to move her now. I can't leave my family to go live with my sister, and I think it would be a huge mistake for her to move here (not that she would, anyway). Because I am willing to be responsible for her needs, I am told I am already doing everything they would assign someone to do, so I can't get any "help". I now wonder, had I refused, what would have happened?. I think it is so ironic that Medicaid will pay an agency $17-$22 per hour to "coordinate care", yet all the many times they can't find anyone, all they have to do is inform the family. And they only pay the aides $7-$9 per hour. Yet I can quit my job, losing $50K per year, and can't get a penny for all the work I do on the case, which is truly a full-time job. Each month I set up the entire schedule and fax it to them; I've placed ads in the papers, interviewed, hired, arranged training and supervise the aides. I do understand the agencies carry insurance and do the billing of Medicaid, but whew... it really seems like if you work hard, contribute to FICA, pay your taxes, and save a little money, you get punished for it. Does that make any sense? It's because ALS is such a misunderstood or rather comparatively rare disease. The agencies don't understand that it's NOT the typical case of someone being paralyzed who just has to be "turned" every 2 hours. The aides really WORK when they are with my sister. Every few minutes they have to adjust her hands or feet or mask, not to mention the toileting, and very personal things like cleaning inside her nose the first hour of the day. It takes 3 hours just to get her up and dressed and in the chair ready to be fed. The aides are the real heroes in our whole system. Sorry. I didn't mean to get on my soapbox again, other than to say, I have tried to get help. I must sound very selfish and self-absorbed. But actually, I'm just tired. It's been a long haul. We don't talk enough about the behaviors of the patients which make it difficult to keep aides. The doctors and nurses can only think about the good of the patient, but actually, a terminal disease affects an entire family. The person who's trying to find all wonderful aides who can put up with the constant work and the "control" issues in the patient (such as "pick up that little piece of lint on the floor" several times an hour) has a real challenge. Anyhow, I still AM very anxious to get the blood test.
Thank you for responding.

By Cynthia3
Posted March 1, 2008 at 11:00 am

RochesterBarb,

Whew, it does sound like you are busy. I know, often times, even when there is assistance provided for some personal care of those Living With ALS, there is still a good bit of "Care Coordination" that seems to fall upon the shoulders of the family caregivers. If your sister is disabled and receiving SSSDI, SSI or Medicaid, perhaps the county health dept can provide a case manager to assist in coordinating her care. A call to the local ALS Chapter office 315-689-3380 would put you in touch with someone who may be able to assist you with locating additional local resources. Although I do not have all the details regarding the focus of the ALS Gene Study at Massachusetts General Hospital, I'll include information from the study flyer and a direct contact to the study coordinators:

ALS Genetic and Environmental Risk Study

Researchers at Massachusetts General Hospital are continuing to seek individuals for participation in an ALS Gene Study conducted by Dr. Robert H. Brown Jr. The purpose of this research study is to identify genes and environmental factors that may cause or increase the risk of developing amyotrophic lateral sclerosis (ALS). This study includes individuals with ALS, possibly some family members, and unaffected, unrelated controls. Participation requires a one-time blood sample, completion of questionnaires about environmental and family history, and permission to review medical records pertaining to the onset and progression of the disease for those with the disease. All costs are covered and travel to Boston is not necessary. Arrangements can be made to have participants’ blood drawn locally.

Eligibility: Any person who is diagnosed with ALS and possibly some family members. We are also recruiting unrelated, unaffected individuals as population controls, such as spouses and friends.

Please contact us at:

Nicole Couture or Diane McKenna-Yasek
Massachusetts General Hospital
Cecil B. Day Laboratory
114 Sixteenth Street, Rm 3125
Charlestown, MA 02129

Tel: 617-726-5750
Fax: 617-726-8543
Email: ncouture@partners.org
Email: dmckennayasek@partners.org

By Tandamay
Posted March 1, 2008 at 2:29 pm

Being a caregiver is not an easy job - in my book it is just about the hardest job there is. I am a grandmother, a mom and a caregiver – in the reverse order since I am the hands and arms for my daughter. Marcie has had ALS for 14 years. She is paralyzed, has a trach and a vent breaths for her and she has a PEG for feeding. She as a computer that reads the retina of her eyes – with this she can operate her TV, VCR, DVD and her radio. I so understand your feelings, I do everything for Marcie. I am glad my husband has a good enough job that I am able to stay home and care for her.
Marcie also waited until the last minute to get the equipment she needed – even to the extent of waiting till the last possible second to have a tracheostomy done and being connected to a ventilator to live - she was this way with everything!
I just had to laugh when I saw this in your posting (such as "pick up that little piece of lint on the floor" several times an hour). But you must remember all your sister and my daughter can do is sit in their wheelchair - if your sister is in a wheelchair – Marcie is - so she does see every little piece of lint or paper or the like in her room and I am to take care of it.
Only people in your shoes or my shoes know just how long it does takes to get a person ready for the day when then cannot do it themselves – you tell them but they still do not really know what you are talking about. People just do not get it ! Many times it takes longer to get my daughter ready to go somewhere than going where we are going and getting there and back home but that is just the way it is.
And I have had trouble hiring people also – so I don’t even try anymore. I just stay home all week, Monday – Friday and like today I’ll be here all day today – Sat. since the lady who usually comes cannot come today but she will be here tomorrow afternoon so I can get out of the house for a few hours then.
Well, I just wanted you to know you are not alone in this –I cannot help you except to tell you I Iive it also.
Linda Gibson
CALS to my daughter Marcie
DX with ALS in 1994 when she was still in college and only 23 years old
Today she is 37
Paralyzed except for her eyes and her eye brows
Has a PEG for feeding since the summer of ‘04
And Vented on her 36 birthday – Nov. 21, 1006
Her brain is as sharp as a tack
And she is Living with ALS
We live in Arlington, TX

By RochesterBarb
Posted March 1, 2008 at 3:06 pm

Dear Cynthia,

Thank you for all this information. I really do appreciate it and will contact those running the study this week, along with looking into getting a case manager from SSD.

I also found a really valuable answer this week reading Quest magazine. We had been having power outages whenever there was a wind or snow storm, which is really a problem when someone is on non-invasive ventilation 24/7 (BiPap).. We had purchased a generator, but it's hard for the aides to use. I learned from the magazine that we could just purchase a marine battery, and an inverter, and the next time there's an outage, she can just plug into the battery which should hold her for several hours.

Thanks again,
Barb

By imamom
Posted March 1, 2008 at 6:15 pm

Linda....
It was interesting to run across your comment as I am a parent to my son with ALS. Yours especially cought my eye given the age of Marcie when she was diagnosed. My only child Alex was diagnosed with ALS last May at the age of 17. He is currently a senior in high school with plans to attend college in St. Paul. We live in a suburb of St Paul, about 30 minutes away from the college. So far his involvment is mainly in his hands with generalized weakness in his arms & legs. Luckily he can still do all of life unencumbered. His grip is getting weak when he golfs and he uses a laptop computer for some school projects where the writing tires his hand. Very lucky so far.

Part of my interest in your story is to hear of your daughter's choices, especially the trach & vent. I am a pediatric intensive care nurse with 26 years of trach/vent, feeding tube, death, etc. experience. I try to not get ahead of myself in terms of this journey...one day at a time. But I ponder what Alex will want as things progress, especially assuming I will end up providing most of his care.

I have seen the realities of how life looks when one is paralyzed and trach/vented. I have done home care as well as my work in the hospital. I can appreciate the work involved and the 24/7 commitment required. I also wonder about the quality of that life. I have seen families chose to keep their children alive just to still have them, despite nothing about the child being like they used to be. ALS is different as the mind typically stays intact. So how does that impact the decisions? I wonder what I will feel when these times come. What would I prefer in those situations? What will Alex want? We won't know until we are there. But I wonder how it was for Marcie. And for yourself.

You also mentioned Marcie waited until the last minute to get equipment she needed. My support group stresses getting things early rather than waiting. What would you say are the pors and cons of each? Or tell me more about Marcie and her decision making process. Or if Marcie would prefer, I would love to hear from her. It wouldn't matter how long it takes for her to answer. We're not going anywhere!!!

I would be very appreciative of anything you have to share as the next youngest person with ALS we have been in contact with is 28 and married with children. So that isn't really comparable to a young adult who is not married. We are very connected with ALS in our community. But nothing compares to first hand stories and food for thought from those directly living every day with it.

Linda, you sound like a wonderful mother who definitely has perspective. I laughed at the "seeing every little piece of lint on the floor." Your perspective was precious. Being a teenage male, seeing lint or cleaning in general is not his thing. So maybe my male son will finally notice the dirt and lint!!

Blessings to you and Marcie. My best friend from college lives in Dallas. So I adore Texas! Thank you for sharing about your daughter. I really resonated with it!
Lynn
CALS to my only child Alex
Diagnosed with ALS May of 2007 at age 17
St. Paul, Minnesota

By Tandamay
Posted March 1, 2008 at 7:05 pm

Lynn, my e-mail is lindafgibson@tx.rr.com

my blog is http://linda-gibson.blogspot.com/

and if you want we can connect by way of IM once I have your e-mail address - I can send you and invatation or you can send me one since I am giving you my e-mail address

or even my phone - just today we signed up for free calling in the US - Iam using up all my cell minutes talking long distance

I so know how you feel - ALS is not supposed to strike this young but it does - believe my - over the years I have been in contact with many families havaing a child DX with ALS

looking forward to hearing back from you

Linda

By RochesterBarb
Posted March 2, 2008 at 12:28 pm

To the two moms who found each other through this thread: I am SO glad you now can talk to one another. As a mother of 4 and grandmother of 4 it seems like the love a mother feels for her child makes it both easier and harder: easier to accept the everyday "giving of one's own life", the sacrifices; but much harder seeing your own baby go through this.

Yesterday I attended the funeral of the 22 year old son of friends of mine who died from injuries sustained 8 months ago in the line of duty. He had been recovering from a serious brain injury, but got a fluke infection from a feeding tube perforation and died from it in less than 24 hours. I thought of many things: the horror and shock and extreme sorrow a mother must feel in a situation like that, but also the relief of seeing her child not suffer any more. I confess I don't feel that same kind of deep, deep love for my sister. Since we were not close growing up, I do this because I do "love" her, and I want her to die the way she wants to die, but I confess I do not love her with the same fierce love I have for my children and grandchildren.. the fierce love you two exhibit toward your children.

If there is anyone out there coordinating care for a sibling who is divorced or single, and who doesn't have parents or other siblings alive, please drop a line :)
-Barb
PS... The doctors and nurses tell you to "do everything early" but then they also say "let the patient guide you". I find that very frustrating, especially because the patient often resists every piece of equipment. BUT, I learned the hard way not to take her first reaction as the final word. As I said, EVERY piece of equipment people want her to try she said "NO!" to at first (like the cane, walker, wheelchair, BiPap machine, and even little swabs to clean her nose)... But then, after the idea works on her subconscious for a few days or weeks, she becomes more open to it. Or sometimes it's after she hurts herself resisting that she becomes more open. Several times of cracking one's head on the ground will do that, I guess. I mean, for my sister it took MANY falls to convince her she HAD to start thinking about using the walker, and even then, she would blame the falls on something other than ALS. (I can't imagine how hard it would have been to watch my child do this... SO much harder than watching a sibling who is an adult!")

My thrill this week was that I "invented" a tool to clean her nose more effectively. I took one of those little pink sponge-on-a-stick thingies that they use to swab out a person's mouth, and I trimmed it to be the same size and shape as the end of a finger. She resisted at first, so I just left a note for the aides to try it, with a kleenex over the end, if they could get her to use it. (You see, she was having whoever was taking care of her "dig" up in her nose because she drains so much in the morning and it never felt clear. It was truly disgusting, and we "never did it right".) The next day she left me a message on my phone that I was genius and should go into mechanical or medical engineering. So, my point is, I try to take her needs and her feelings seriously, but no longer take her hurtful or angry first reactions TOO seriously.

I don't do the everyday physical care. My role is to keep those who do able to stay with us, and to make it easier on them and my sister, with the ultimate goal of her being able to die at home. She will never get to the stage of your children because she has already decided no traech, feeding tube, or invasive ventilation. So I have it much easier than you do on several levels... I'm glad you can talk to each other now. Thank you for writing so I can see I should not feel sorry for myself so much.
-Barb

By Cynthia3
Posted March 2, 2008 at 5:47 pm

RochesterBarb,
I'm glad you found the information helpful. You may want to contact the local county health dept to locate a case manager for your sister. The The local ALS Chapter (315 689-3380) may be able to put you in touch with NY Connects, which is a point-of-entry for referral to county health services. If you are considering a battery back up for the BiLevel device your sister is using, be sure to complete your back-up system with 1) a Battery charger, 2) a Deep-Cycle Gel Marine type battery , and 3) an inverter capable of supplying the correct amps. The home care company providing the Bi-Level should be able to give you the battery specs from the manufacturer. Also, don't forget to turn OFF the heated humidifier when using battery power, as the heated humidifier draws a tremendous amount of power and will draiin the battery much more quickly.
Regards,
Cynthia

By RochesterBarb
Posted March 2, 2008 at 11:44 pm

Back to Cynthia-

My sister is already receiving SSD and community Medicaid, and the assets in her Special Needs Trust go down to zero by the end of every month, now. I've been told by several people that with the home care agency we signed with, "your nurse is your case manager"... but the nurse doesn't know about anything except medical things... not financial or respiratory things, and the agency never HAS to fill a vacancy in aides ---Their only obligation, I'm told, is to "call the family". They tell me my sister is "not a 'must-fill' case".. Medicaid says they "don't provide case managers" .

I just spent today, my "day off" finding people (private pay and CDPAS) to fill several gaps left this week because one of our aides was taken to the hospital today. The CHHA agency "sends it out" (which means they send a fax out) but they almost never find anyone.

THANK YOU for the info about the battery. Why do I never get answers like this when I ask? I ask doctors, and nurses, and respiratory therapists... Why do I only find concrete answers online? What you said about the humidifier: I don't know if hers is heated, but ResMed, the manufacturer of the device did ask me if she uses a humidifier before they gave me the specs on what type of battery and inverter to get. Do you think, therefore, they took that into account?

I also would like to ask you your opinion about something else relating to patient rights. My sister never likes any new aides we find, and our list is getting shorter and shorter. I haven't had even one response to this week's ad I placed looking for new aides. Actually, I have two questions related to this:
1. Should I appeal the fact that the agency doesn't have my sister flagged as a "must-fill" case, because they are depending on me to fill it?
2. Related to aides who just fill in a few hours and are not able to use the Hoyer Lift: My sister is still able to use the commode, but she needs to be Hoyered into place to use it. When we are filling a gap with an aide who can't use the Hoyer (for instance, because they have back problems), am I being "mean" to my sister to suggest she consider using a female urinal rather than trying to "hold it" til the next shift? It's as though I'm trying to deny her her rights, but the reality is that the energy required from her AND the aide is very great to get her on the commode with the Hoyer (she is totally paralyzed except for her head), and I think it's inhuman to have her try to "hold it." . I want to tell her, "Keep your eyes on the bigger goal of dying at home," but is that manipulation on my part? It is not my motive to manipulate her; it's just a fact of life as we currenlty are living it...that it might be wise in an emergency to occasionally use a plastic urinal, or to urinate into a Depends. I think to myself that I would do that in a minute if it were me; but I am not her and I can't assume I know how it would feel to be told that.
Thanks again,
Barb

By Cynthia3
Posted March 5, 2008 at 6:47 am

Good Morning RochesterBarb,
The CHHA may be able to provide a Social Worker to assess your sister's entire situation, or the county health dept or council on aging may be able to provide a social worker to assess her situation. Once the CHHA developes a Plan-of-Care, I imagine they would be held accountable for providing the services. If they frequently fail to provide CNA according to the plan, you may want to inform the manager, owner, or state licensing board. I'm glad you were able to get information regarding the battery from ResMed, the manufacturer of the Bi-Level machine. If you have a humidifier, just be sure to turn the humidifier dial all the way to the left (it will click) to turn the heater off, when you are using battery power. I imagine a variety of difficulties may arise when people depend on assistive or alternative toileting manuevers. Your suggestions of using a urinal or 'depends' certainly sound like appropriate alternative considering the situation.
Regards, Cynthia

By RochesterBarb
Posted March 5, 2008 at 8:58 am

Thank you. I have already informed the manager, several times. This week, she and all the VIPs are away for three weeks. I will try to find the name of the owner. The head of the social work dept within the CHHA was the one who told me I'm already doing everything they would do so they have nothing to offer. I am afraid to report them to the state licensing board for fear they would leave us high and dry starting now. But I will ask the Medicaid counselor if there is any way THEY can apply pressure because of seeing how much we have to pay out of pocket every month. Yesterday I spent the entire day trying to find a "200 watt pure sine wave" inverter, but I finally found one at midnight online. After my sister dies and after I recoup, I am going to write a "what I learned the hard way" book :)

By Cynthia3
Posted March 5, 2008 at 1:30 pm

RochesterBarb,
I have previously purchased a Maxx 400 watt power inverter, model No 782-2232, from the local NAPA auto parts store to provide emergency & portable power for a ResMed Bi Level device. It came with an auto-cigarette lighter adapter as well as clips to be used with the Marine, deep-cycle battery. The cost was approximately $50.00.
Cynthia

By Tandamay
Posted March 6, 2008 at 7:58 am

Lynn , please contact me at my email address

lindafgibson@tx.rr.com

This board is the only way I know how to contact you

I would really like to "talk" to you

Linda Gibson
Arlington, TX

CALS to Marcie
DX with ALS in 1994 -she was 23

Today Marcie is 37 and LIVING with ALS

Linda

By Cynthia3
Posted March 12, 2008 at 8:16 pm

RochesterBarb,
I have used the previously mentioned, Maxx 400 watt power inverter, model No 782-2232, from the local NAPA auto parts store to provide emergency & portable power for a ResMed Bi Level device. It came with an auto-cigarette lighter adapter as well as clips to be used with the Marine, deep-cycle battery. I realize this inverter is listed as a "modified, filtered sine wave" device. As long as you turn OFF the heated humidifier on the VPAP III, it is not necessary to have a "pure sine wave" device. I was able to confirm this information with the Tech Support Department of ResMed, mgf of the VPAPIII unit. You can reach them at 800-424-0737.

By RochesterBarb
Posted March 12, 2008 at 8:21 pm

Thank you! So how did you learn all this? Do you just keep asking questions even after they tell you one thing is a "necessity" (i.e. the "pure sine wave" model)? Am I just not being assertive or inquisitive enough?

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