I'm new to this site and wanted to say "hello"... - Muscular Dystrophy Message Board

Netta1958 · 08-10-2002, 05:50 AM

Hello Everyone!

I found this site, liked what I saw, and decided to post a message.

I am 44 years of age, and have always had physical problems, limitations, and such. I was born with a congeneral hip dislocation, then when a young child I under went 2 Achilles lengthening operations (1st on both heals-age 6; the 2nd a repeat on one heal-age 12). I also would just collapse for no apparent reason
Over the course of time, my folks took me to many good doctors trying to find answers to my physical problems.

When I was 16, and after many exams, tests, and tons of blood work gallore, the doctors belived what I had was either Post-Polymyositis (which is more like a neuromuscle virus which is eventually suppose to run its course over time, stop its progression, and you stay at that stage) or a form of MD. They were leaning more toward PP, or at last were hoping it was PP. By age 21, it was established I actually had Limb-Girdle MD. In 1983, I stopped walking altogether but was till able to care for myself on many levels.

Things, as they always do, have to change. Sometimes for the better, other times not so much. For the last 14 years I've had home health care assistance provide care for me at my residence. I've noticed, however, that the level of care (emotionally and motivationally)has deminished, especially over the last few years. Although many of the caregivers I've met are nice, many seem lacking in professionalism, education and skills knowledge, common sense, and have little patience.

I was curious if anyone reading this has found this to be the case as well on your experiences with home health care? Whatever type of disability you might have, or that of loved one, friends, or neighbors who might have vented out their frustrations about their caregivers, have there been any noticable changs that have been seen?

Well, thanks for reading this, and letting me vent.

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Blessings to all!
Netta

08-15-2002, 03:40 PM

Hi,

I noticed you haven't had any replies yet so I thought I'd answer you. My fiance has Duchenne Muscular Dystrophy, he has carers, two to get him up out of bed in the mornings and two at night to put him to bed, on Tuesdays and Thurdays one stays til 3 in the afternoon, we find the carers really good and jokey, we have had a few rotten ones, one who we have had to get rid off in the past couple of days, she was always telling Mark she couldn't do things for him so she got sacked. The team we have in now is really brilliant, they're friendly but sometimes they too don't have the patience but more often or not if they try to be clever Mark soon tells them off. As I'm not aloud to give out our e-mail address on here, if there are any questions you wish to ask me or Mark, don't hesitate to reply to my message, ok. I wish you a lot of luck for the future. By the way Mark and I have a six and a half month old baby boy, Benjamin was a miracle because Mark wasn't meant to be here at 16, he has just celebrated his 31st birthday!!!!

Netta1958 · 09-08-2002, 02:08 AM

Hi Melissa_Shaw,

Thanks for replying ... Yes, I've had my share of wise-mouthed folks working here as well. There are times the caregivers assigned to my case are very sassy & rude, and seem to have what I respectfully call the "I.C.R.S." syndrome. No matter how many times you remind and/or show these caregivers what is required on my case by the client/patient care plan schedule, which has been written out by the Director of Nursing from the agency in which I'm affiliated, it always amazes me just how ignorant, deaf, or niave these women pretend to be, and how ignorant they believe the client/patient and/or their families are to these facts.

It's wonderful you and your boyfriend had a child together. I wish you all blessings and health in abundance.

Sincerely, Netta

09-17-2002, 03:12 PM

Hi Again,

Thanks for replying. I agree with you about carers, my fiance's aren't too bad at the moment, they help out a lot and look after our baby boy sometimes which is nice of them. When the carers come in, if they don't do something that Mark likes he tells them but they think they have the right to answer him back and I think that if Mark isn't comfy then he has every right to say so, your carers don't seem very good, can't you ask for new ones? Carers are meant to be friendly towards everybody including people who live in the household as well as the client, I've had run ins with carers who didn't like me but it doesn't bother me anymore, just ignore them or get intouch with the care company and get them changed?

Netta1958 · 09-18-2002, 04:19 AM

Hi Melissa_Shaw~

The caregivers these days don't seem to have that "empathy" or "caring" type attitude that a nurse or caregiver did years ago. I've been with HHC for 14 years to date, and I've seen many changes both with in people and with in the HHC industry.

Let me tell you about a situation that happened only a few months back with in the agency I'm with. The HHCA was giving a PCA/HHC training course which is held for 1 week. Well, as the story was conveyed to me: 2 women - future HHA's - got into a dispute. The dispute was over the attitude of one student by the other.

One woman, let's call her 'K', tossed a piece of crumpled up paper toward the garbage pail next to the teachers desk, and it happened to miss falling onto the floor. She turned to the woman standing next to the pail, let's call her 'B', and told her to throw the paper into the pail as she was standing next to the pail at the time. 'B' refused on the grounds of the maner in which 'K' agressively told her to throw the paper into the pail. One thing lead to another and a big arguement insued becoming rather aggressive along with threatening. 'K' threatened to beat up 'B', advancing toward her; 'B' picked up a chair in self-defense; 'K' threatened to have her "friends" come out for a free-for-all ... etc., etc.

While all this is going on, what is the teacher doing? Making her way to the doorway to stand there and look on -- thats it -- just look on! You would think the teacher or instructor, if she was unsure of how to diffuse the heated situation, would go and get help or at least send someone to get her supervisor or boss or security, or SOMEONE! No, she just stands there allowing the situation to esculate!

Now, what was the outcome of this whole escapade you may be asking yourself? Nothing! They were both allowed to finish the course and receive their HHC certificates! If it was me, I would dismiss both students and give them a year probation before allowing them to re-apply for a second interview for a possible acceptance for re-training. After all, if they are acting like this among themselves, what might they do with a client who can not help themselves, or had dimencia, or is frustrated by their situation, disablity, or what not.

The sad fact is this is only 1 story in an ocean of billions of stories -- a mere pebble dropped into a pool creating vast ripples of waves -- and it doesn't seem to be getting any better either.

I was recently told by a caregiver that she wasn't a "housekeeper", thats not her "job", and she's "NOT going to break her back or get sick for no one." I have severe allergies to dust, use a c-pap machine so I can sleep and breathe. My agency has medical documentation and perscriptions from my doctor. The agency must fill out all appropriate forms and careplans for each client/patient according to the State in which we live (mandatory for all medical insurance coverage through each US State). My careplan specifically states that my environment (ie: my apartment) in which I reside is to be dusted and floors swept EVERYDAY! Thats just for starters. Oh, it just goes on and on. It's really becoming very rediculous on various levels.

All these agencies are aware of the difficulties and problems, some people care others could care less. As long as they bring home their paychecks at the end of the week, that seems to be all they are interested with. I'm not denying an honest days pay for an honest days work, but come on now! Where's the concern for the people who need to be protected from the strangers who are sent into the omes of the elderly, the ill, and the disabled?

Thanks for listening to my venting! lol I know their are MANY out here who are going through their own hardships with HHC and the HHC Industry. Just feeling a bit hot under my collar these days.

(<-- this is me! LOL)

Sincerely,
Netta