Really bad day . . .

[Claire]

My first outing for me was ruined – and I’m feeling so selfish. I finally hired a home health aide for eight hours a day. My husband Greg has very little use of either of his legs or arms, and he’s a pretty big guy. The agency told me that although the aide they were sending is short, he has taken care of ALS patients before, but if I have a problem with him to not be afraid to call the agency and they’ll send someone else. He started work yesterday, and I figured that I’d stay home the day just to see how things went. They went okay, but I found that every time he had to transfer Greg, I was around helping. Kind of defeats the purpose. Last night I couldn’t sleep - I was finally, after two and a half months of going out only to do chores, going to go out by myself to do something for me – a haircut and color. I’ve been like a lunatic dealing with getting ready to move, (probably two weeks away) overseeing all the details for a new septic system, taking with lawyers and engineers, and picking out stuff for our new condo, and taking care of my husband as well as trying to spend quality time with him. I figured I deserved this break and I was going to have a guilt-free couple of hours. NOT! Just before I was ready to leave, I heard Greg yelling from the living room. I ran to the room to see the aide holding on to the gait belt trying to transfer Greg from the lift chair to the commode next to the chair. Greg’s one leg was twisted and the more the aide pulled on the gait belt, the more the knee twisted – and both the knees are knee replacements. I ran to Greg, and the only option left to take Greg out of his misery was to lower him to the floor and straighten out his knees, which I was able to do. The aide called 911 and when the police arrived they insisted that Greg be taken to the hospital because his knee and back hurt. We spent the entire day in the emergency room – 10:00 to 6:30. Thankfully only the muscles around his knee were sprained. And now I’m having a pity party! I feel as if I’m becoming invisible – I’m losing me. And Greg’s the one with the horrendous disease, and I’m feeling sorry for myself - and there starts the guilt – again. I can’t stop crying. And I realized tonight that I needed to talk with my friends on this site – because only you can understand what this is like. So here I am. I’m not cleaning out closets, I’m not balancing the checkbook. I’m not doing anything that I should be doing, but I am refusing to let the guilt stop me. Thankfully, Greg got some good drugs, so he’s calmed down and sleeping peacefully. Oh, by the way – I called the agency and left a message telling them that this aide is not working out, and that they should find someone else who will be able to handle Greg safely. Unfortunately, I’ll have to see the aide tomorrow because he left some stuff at our house, but I’ve made up my mind that tomorrow will be his last day in our house. And he’d better watch out if he tells me again that it was Greg’s fault because he panicked, or if he chastises me if I scratch Greg’s nose, or if he tells me again how much more horrible this disease becomes even after I’ve told him that I don’t want to hear about his experiences, because if he says any of those things, I have made up my mind that I will ask him to leave immediately. Even though I think his intentions are good, for me it’s No more Mr. Nice Guy!

I truly hope all of you had a more uneventful day than I. It’s comforting to know you understand. God bless us all. Claire

 

[COlisa]

Claire,
Hang in there and DO NOT feel guilty about anything. You need some time out and hopefully they will find a good aide to help you (you really got a BAD one...NOT your fault). I have lost myself too. All I do is work,take care of Dave, then when it's time to sleep, I spend it turning, covering, moving, adjusting Dave ALL NIGHT LONG. I can't remember the last time I slept 3 consecutive hours in my own bed.

Anyway, hang in there. Keep trying to find a good helper at home. There are some good ones out there, sowhenyou find one, hang on to them!

Take care,
Lisa

 

[brooksea]

I think you should write a letter detailing the incident and send it to the agency! What kind of nonsense was that? This guy clearly could've have done much more harm to your husband if you had not been there! Furthermore, the psychological distress he has caused you by making dispassionate remarks is inexcusable!

I hope you get your day out soon!

 

[GRM2008]

Wow.....that's a terrible story!....that aide sounds like he is untrained, even though they said he could handle your husband.......and also, to make comments like that, means he's totally clueless as to what this disease (or any as serious) does to people emotionally!.....keep searching for a qualified aide, and do not give up!.....try sittercity.com........You need to take care of YOU, or else you will be useless to your Husband and you will suffer as well.....i think that i am losing it, having to drive 4 hours each weekend (2 hours each way) to help take care of my mom who has ALS, after working my full time job all week and raising teenagers....i am stressed, depressed, tired, you name it...........but when i read the stories of you amazing people who are taking care of spouses day in and day out, not getting a minute to breathe, and not sleeping, it just makes me so, so angry over this disease!...how awful for the PALS and CALS!....it's a cruel partnership......it's so important to get as much of a "team" together as we can -- so that there's someone to sit with our PALS for even small periods of time so that CALS can get the chance to re-energize.... a cup of coffee or a hot bath!.....ask for volunteers from the community, neighbors, etc...when someone says "i wish there was something i could do", say "there is .... can you sit with my [husband] [wife] [mother] [father] for an hour?" or "can you bring a tray of food one night a week?"...in my mom's condo community, one of the women organized several families and they each bring a dinner one night, so approximately 4 nights a week, dinner is brought over.......have people go to the store if they ask, or perhaps come over and help with laundry and housework so that the caregiver can take care of the PAL knowing the other stuff is getting done.......alot of people might feel uncomfortable around ALS, but they can do those other things to help.......there are lots of things people can do, and it's surprising how much people really do want to help, but they need to be given a specific task.........

 

[shelleynshaggy]

Claire - what a horrible incident. Take a mental break (no closets etc.) and do something for yourself (even if it order pay per view). There is no reason to put up with the aide. I agree with writing the agency - obviously someone is overselling themselves and not as trained as they claim to be. If he knew ALS at all he'd know how different these cases can be!

 

[Claire]

Thanks for the support. I really needed it. The aide is gone and the agency has no one to send, so we're off to square one. The agency claims that they're going to refund me my initial deposit immediately. I've written them already detailing the incidents. Thankfully,tomorrow a friend will be over in the morning visiting, and my wonderful sister-in-law will be over in the afternoon - and I will get my hair "clipped and dipped" as my husband says! ( I am so excited) Our daughters and sons-in-laws will be here this weekend, and thankfully, the sons-in-law are nice big guys so I'll be feeling more secure. Meanwhile, I am so scared if I can't find someone for Monday. The big problem with having people we know stay with Greg is the bathroom issue. He's okay with an aide assisting him, but anyone else that he knows-except me- he doesn't want assisting him with the personal stuff - and I could fully understand that. Any suggestions of how to deal with that? He's not wearing diapers, but now that he's having difficulty even taking a few steps to transfer I'm not sure what to do next. As soon as I get off this site tonight, I'll try sitters.com and I'm going to reach out to Robert Wood Johnson ALS team which I didn't think of until this afternoon.
Thanks for caring enough to respond. I truly am blessed to have found t his forum.
God bless us all. Claire

 

[COlisa]

Claire,
You are exactly where we were just 2 weeks ago. Until that point, Dave could bear weight and stand for us to transfer him to commode, bed, wheelchair, etc. Then one day, suddenly, the legs just wouldn't hold any weight.

Get a hoyer lift NOW and practice hoisting friends so you know how to use it for when he cannot transfer himself at all. Also, an easy pivot seems to be helpful for us (we have had it all of 5 days, but once we figured out how to use it, it is very useful). We have same issue with Dave: he will let me or his parents or a paid aide help with toilet, etc, but won't let anyone he knows do it. I don't blame him, but it is SO hard to find someone good and experienced. Plus EXPENSIVE.

Maybe check local nursing schools or something for someone looking for a job. We hired a CNA who is going to nursing school part time. She is WONDERFUL. The only problem is that she is not available all the time we need her for when I am at work. Dave's folks were able to help when he could transfer, but they cannot do hoyer (they are a bit afraid of it and both of them are in late 70s). This is why I'm trying to get Dave using condom catheter (see separate lengthy thread on the subject.....still trying to figure that all out!)

Take care.
Lisa

 

[hopeful warrior]

Oh, girls! Reading your posts is like looking in a mirror! I finally hired a nurse who was put out of a job when a local dr. closed his practice and moved. She works on range of motion exercises with Greg then sits with him for a few hours so I can run errands. He just recently will allow her to help him potty and she has been with us for 9 months! I really think the range of motion exercises help keep him more limber and loose.

Let's all hang in there together. We can understand each other. Thank goodness I know some one knows what it's really like.

 

[pepsiman]

The best thing I ever did was to hire a private nurse for Liz. Colleen was the only other person Liz would allow to do toileting besides me. It's a hurdle, but once you find someone you can trust, it's all worth the effort. My relationship with Liz improved vastly once I had someone else easing the load on me. I know Liz hated what was happening and she repeatedly mentioned how difficult it was for me, but I didn't realize the toll it was taking until I had someone else helping me. I wish I had found Colleen three or four months earlier.

Dick

 

[indigosd]

Oh....again, I soul wish that we all resided in a "ALS COLONY" so that we could love, assist and support one another in real ways...as Cj so eloquently stated, "They just no get it"! In the meantime, here we are with our virtual arms and love THANK GOD! Maybe ALSA, MDA and all those other organizations that have us raise money for RESEARCH could part with some of it to help us survive the minutes? Love to all and you are each and everyone such incredible and fabulous human beings. hugs

 

[Claire]

Thanks for all the suggestions/support. First things first - I got out for my clip and dip today and feel so refreshed emotionally, but my back is killing me from the lifting/guiding part. So many questions for all of you.I am definitely looking into a hoyer. How big are they? Are they transportable? Are there "beginner" lifts that graduate into full fledged lifts? How about the lift on carpeting? Lisa, could you tell me more about the pivot? Greg's physical therapist showed me how to use a transfer board which I plan to get tomorrow when our children are here, but this pivot thing might be better? Sorry I'm asking these questions here instead of looking up the answers myself.
Okay - questions about the aide/nurse. . . two years ago we got long term health care insurance, and the policy entitles us to $150 day for help at home, but we have to provide the insurance company with a voucher with the hours along with a certificate copy and license number. My guess is that is to make sure that SS and insurance are part of the deal. Would a private nurse have such a number? Dick, did you have to deal with this issue?
Once again, thanks for all your support/suggestions/prayers - for being you. This is my respite each night before I go to sleep (for the first time - and I don't have to say anything else about that because all of you know what I mean!) You are the best.
God bless us all. Claire

 

[COlisa]

Hi Claire,
We got both our hoyer and easy pivot on loan from ALS Association. Dave perfers using easy pivot, but i use hoyer to get him in and out of bed as it is easier for me. Easy pivot works well to/from wheelchair/ commode. Here is link showing how easy pivot works (am I allow to post links?) Easypivot ? standing patient lift for disabled Taught myself how to use it by watching videos and my 16 year old son wrote up a 31 step process of how to transfer using it.

Hoyer is not really portable, but I know people travel with them. They must have some special travel model. The sling that ALSA loaned us was WAAAAY to big for Dave, which just caused frustration. We ended up buying a sling from United Seating for 150 which works alot better. I am still really slow at using the hoyer.

We have thick carpet in bedroom and after a disaster where my father in law put 1 inch subflooring OVER our carpet (it outgassed horrible fumes, was splintering constantly, hard to get wheels on and off plus UGLY!) I had a friend haul it back to the store and buy 2 sheets of 4x8 1/4 inch MDF that we put under Dave's hospital bed and right next to it. It looks better, is smooth and works like a charm for hoyer and easypivot & commode to roll over.

Hope that helps a little bit. Hang in there!
Lisa

 

[hopeful warrior]

We live in a small town so I was aware of our "helper's" change in work status. We pay her $15.00 an hour. She does range of motion exercises with Greg for about an hour. After that she sits with him until I get home. She will help him use the urinal if need be and feed/water if he asks.

 

[JeffP]

claire my thoughts and prayers go out to you and your husband .i feel so bad that agency put you all through that your in my prayers

 

[marya]

Claire, that is just heartrending. I'm glad you did detail this and that the agency will refund your deposit etc.. Please know that a home health care provider should not be chastising you for anything! He is YOUR employee - he works FOR you and your husband. And getting your hair done sounds like a good pick-u-up. I may try that myself Please try to let go of the guilt. NYF!(not your fault!) Mary