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Hewitt

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Is there anyone from the Boston area who can recommend a home healthcare agency that can help my sister? She was diagnosed with bulbar ALS in December, and I am seeing her for the first time since then this week. I am utterly shocked at the change - she can barely walk and falls frequently, can barely speak, is incontinent, eats only with the greatest difficulty (and chokes and regurgitates) so that every meal takes hours, and she is confused and obsessed with OCD routines that make any effort to help her like herding cats. It is utterly heartbreaking, but I am also extremely concerned for the health and well-being of her husband and children. She cannot be counted on to stay in bed at night, and this morning I found her on the floor, soaked, and she had apparently been there for most of the night. Her family has been soldiering on as best they can, but her husband has had a serious bout with cancer this year, and he cannot handle this level of caregiving without dire consequences to his own health, I fear. I live far away, but I thought if I could get some recommendations for capable caregivers in the area it might help. I know rates of progression are extremely variable, but is this sort of rapid change often seen? Thanks for any advice--
 

Nikki J

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I am so sorry. I was just thinking of you and wondering what had happened. Does she have a diagnosis of FTD as well?

I hope someone can come along with a recommendation for home care agencies though you might also try local nursing schools and see if you can find someone there. You then have to make sure properly insured in case the helper gets hurt of course.

We had a agency 10 years ago for my dad. The quality of help varied wildly from wonderful to abysmal and some supervision is needed. Can her husband manage oversight ( not constant presence but some)?

Ask for a pt , ot eval at home too. Is the clinic aware? They were supposed to be getting a social worker and her primary nurse should be a good resource too
 

Hewitt

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Thanks, Nikki! Yes, they have sent a pt to her home, but my sister left on vacation after the first visit, so little has been accomplished so far. I am worried because she is just cachectic and falls frequently, so it's amazing that she hasn't had a more serious injury. She also is having great difficulty swallowing pills, and she has to ingest so much water at bedtime in an effort to get them down that it leads her to get up to go to the bathroom during and night, when she is apt to fall. I just emailed her nurse Melissa to ask if we could grind her pills up in applesauce to alleviate this problem. They have not sent a social worker, and her husband tells me that, though Melissa said she has FTD, they have never discussed this with him. Unfortunately, he is not finding her doctor to be particularly responsive or helpful, but I don't know whether that is because he really is unresponsive or whether her husband is just not letting them know how very bad things really are. He is trying very hard to be on top of things for her while he also cares for their children, but it is an impossible situation. In any case, I'm trying to take over for him while they are on vacation here, but I am just shocked at how stressful the caregiving is. I took care of my very addled, agitation mother with Alzheimer's for ten years, but that seemed much easier than this, so the family really needs help.

I hope you are well, Nikki. I am still very grateful for the help you gave us last winter, and I wish you all the best--

Hilary
 

Nikki J

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The social worker at clinic would see them during the visit. But the vna or even alsa might have someone too. And ot should come to the house too. I wonder what the pt said and did? We had some who looked at the environment some who only addressed things when asked and most were clueless about ALS and wanted to rebuild strength

Is a feeding tube on the agenda?
 

lgelb

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Hi, Hewitt,
There is a "do not crush list." If her med is not on it, and is not an extended-release form, applesauce should be fine. We found dissolving in hot water helpful as well. Depending on the med, different textures work best.

If she does not elect a tube, she sounds eligible for hospice, which requires her doc's order, and so you would want an agency that is reimbursable by their plan(s) and can go on line or ask for a list. Generally, in the absence of other criteria, not-for-profits such as VNA (which often has a non-hospice wing as well) are best but their clinic should have recommendations. And it's like any other relationship -- they should not feel compelled to continue w/ the same agency if it's not working.

Some caregivers post jobs wanted on craigslist, indeed and care.com. Caveat emptor.

Meanwhile, they need some help and Nikki is right -- posting with local nursing schools, CNA programs and pre-nursing programs is always good. Tapping their social network, including online a la Facebook, should yield some recommendations as well. It's summer and some students who did first summer term this or that are looking for second summer jobs.

I also agree that a local social worker/care coordinator familiar with resources, whether allied with a home health agency, ALSA, MDA or hospital, is worth consulting.

Best,
Laurie
 

soonerwife

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Hilary, so sorry to hear about your sister's progression. I really hope you can find someone in the area to help your family.

Your user name makes me curious... is Hewitt someone's last name in your family? Hewitt is our last name. My husband has bulbar onset ALS as well.
 

Hewitt

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Yes, her husband said that the doctor said they would discussion insertion of a PEG tube as soon as August. This is in advance of when she would actually need it, and she isn't anxious to proceed with it because she says she will miss the taste of food, but I think they want to get it in place so it will be healed and ready when she absolutely must use it. She is extremely conscious of not aspirating things, so I think she is aware of the danger inherent in eating food and choking, but she isn't as rational now as she used to be, not surprisingly.
 

KimT

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It appears the family needs some emergency assistance while everything is getting in place for routine home health care. The care she requires can be found with correct training. My friend's mom was in end-stage renal failure and we found unemployed CNAs who were willing to train in the home dialysis. This worked for over a year. They were paid $10 an hour and well worth it. They also cooked for her, did light house cleaning, fed the two dogs, and made sure Nellie was clean and escorted to the bathroom. They were there at the very end even when hospice took over although their hours were reduced.

I found them through my college and on Craig's list. We interviewed them and picked out the ones close to her who we believed would be dependable. We had backups. It allowed my friend (her caregiver) to keep her job throughout that hard year.
 

Diane H

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Yes, her husband said that the doctor said they would discussion insertion of a PEG tube as soon as August. This is in advance of when she would actually need it, and she isn't anxious to proceed with it because she says she will miss the taste of food, ...
Hopefully someone has told her that getting a feeding tube doesn't mean that she has to stop eating entirely and immediately! She will have the tube to make certain she is well nourished but she can continue to eat anything that doesn't choke her, including tastes of pureed favorites. At some point it won't be possible for her to swallow anything, but by then she will recognize that never being hungry reduces food cravings somewhat.
 

Jfmitch38

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My wife had PT and he just wanted to rebuild strength, did not know ALS we have a speech therapist also he works on swallowing. My wife is petrified to swallow, she chocked many times before diagnosis.
 

Hewitt

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Hilary, so sorry to hear about your sister's progression. I really hope you can find someone in the area to help your family.

Your user name makes me curious... is Hewitt someone's last name in your family? Hewitt is our last name. My husband has bulbar onset ALS as well.
Actually, Hewitt is a family name shared by generations of people in our family (generally as a middle name, not a surname), and I just used it as a username because it reminded me of my sister. I'm so sorry to hear about your husband and hope he is doing ok right now. It's wonderful to be able to sign onto this community and talk to people who know what we are going through. Best of luck to you and your husband from all the Hewitts in our family--
 

Hewitt

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Thank you so much for letting us know that! I will tell my sister and her husband, and I know that will be very comforting. It is so painful to watch her eat now that I find it reassuring to know that she will be able to get more adequate nutrition from the PEG while still being able to enjoy some of the soft foods that she loves. Her son made guacamole for a snack today and served it on some chips (a real no-no, I hear), and she had a truly frightening choking episode that had us all worried. I feel really sad to think that after she leaves my life will return to its staid routine while she continues with this daily struggle against disease. I have told her husband about this forum because I think he will really benefit from your collective expertise, and he seemed really interested, so I hope he reaches out soon.
 
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