9 replies to this topic

[Want2Help]

I am a new caregiver to a C5/C6 Incomplete. She was injured 6 months ago and has arm movement but very little torso strength yet and very little hand grasp - but some. I am exhausted, she is a bit OCD about wanting everything just so and calling on me constantly to adjust this and that while I am cooking, cleaning, and adjusting her. She had me cath her every 4 hours even through the night because she doesn't want her diaper to be wet, I needed some sleep so I bought her stronger diapers and boosters and had her stop drinking after 9 at night. Now she is still getting me up every three times a night to turn her. Shouldn't she be able to turn herself? Also, she refuses to use a transfer board and I am killing my back - she is 115 lbs I am maybe 110 lbs. Maybe I am just not cut out for this or maybe I am just exhausted. I can handle the OCD (I am a bit that way myself) and caretaking during the day including all the outings to therapy and such, but the lack of sleep is killing me!

Am I just not cut out for this? If so, if she can't do it, I am going to have to put her notice to find someone else. Any advice?

[Quad65]

Some things need clarification. As a caregiver, were you hired to do this job or are you a friend or relative doing it voluntarily? If you were hired through an agency or answered an advertisement, then all the care this person requires should have been discussed in detail before you either took the job or were assigned to it. If you could fill us in on this point, it would help us to give you better advice.

[Want2Help]

Not hired through an agency, a friend helping out for about $60 per 24 hour period. At the time the agreement was set up I was told only minimal help would be needed - cooking, cleaning, and taking to therapy.....After I started then I was told about the catherization, pooping, showering, etc. We have worked through most of these issues, she showers herself now with some assistance, the diet I cook has changed her pooping habits to be more regular and manageable, and as of the last few nights, she doesn't call me down every few hours through the night, only about once at which I can function the next day. She had been calling me down in the middle of the night every 2 or so hours and once it was to uncover her foot because she was hot, I did it, but later when I was awake I was resentful because I know she can pull the blanket up with her hand. The other day I was just exhausted and we are both getting use to things so it is getting better. I just don't want to be taken advantage of or enabling her to not make the effort to do things for herself which is the ultimate goal.

We have been talking things out more and that also seems to help, but I don't know what I don't know.

Thanks for asking for clarification.

[qbounce]

It's nice that you're helping out a friend, but live in carers are there to help day AND night for a reason. That being said, it's up to you but I would have asked for more money for my efforts months ago. I was paying a 24 hour carer $120.00 a day who was doing the same things you are now.

Maybe a higher salary would compensate how you feel about getting up at night to assist her.

[stunnawife]

I think that what you are doing is terrific. However, it may possibly put a strain on your friendship because she seems very needy and people with those particular injuries do need undivided attention. Although in her case if she could move her hands, she should do so. She is only hindering herself with calling you to do things that she could do. I think that she needs a little tuff love. Basically someone need to tell her that there are people in the world that would give anything to move their hand (my husband) to feed themselves, turn themselves, etc. Doing things for herself will be great exercise as well. I hope that everything works out for the both of you.

[tyvin]

It's unfortunate that you have been put in this situation. Are you getting room and board along with the small pay? Anyway; when family friends go in and act like a caregiver with no training this is usually what happens. The good intentioned friend with no experience doesn't understand the role and full ramification of what a care giver's role is and when and how to push the patient to advance their conditon. Often times good intentions result in bad decisions thought to have been for the betterment of the disabled person.

To answer your question should she be able to turn herself at night the answer is probably not. Perhaps in time but from what I read she needs help to turn. The big red flag for me is the fact that you went out and bought diapers that would retain more fluid so you wouldn't have to change her at night. The number one reason for bedsores is not turning the person and the person being kept in wet diapers. Regular trained caregivers are taught to turn every 2 hours at the start and then go to every 3 in time when the skin toughens up. Also whenever a person is wet they are changed; you don't wait for the diaper to fill with fluid. Make a plan and schedule and stick to it; and have her stick to it. Set her up to be able to be helping herself.

As for sleeping; instead of being resentful about getting up be cool and then go right back to bed. I know many certified aids and nurses who do this on private assignments. Also certified aids will have a respite available because everyone knows 1 person can't do it all. It takes at least 2, one to be regular and the other to give breaks or split the shift which splitting the shift is the ideal scenario.

Why isn't she being evaluated for home health services? All health insurance companies have some type of home health available in the form of exactly what she needs. The least I've seen on some skimpy insurance is at least 3 times a week to come in and bathe, feed, take to appts, etc... Perhaps you should talk with the family about that and see if they are utilizing her insurance to the max for benefits.

Spouses and family of people in accidents get some training in the rehab before the loved ones go home. It sounds like you had no training at all. Fix this before the resentment hurts both you and her.

[tyvin]

One more thing I didn't talk about was don't let her get use to not using the sliding board. Be very strict that if she has the ability to utilize the sliding board then she should. Don't transfer her if she can do it with the board. Good luck to you.

[LovingSister]

Can she turn herself? My brother couldn't if his life depended on it and it seems they have the same injury. I get up every four hours to turn him and so I might as well cath him while I am up so I can sleep four more hours. Yes, this is exhausting and if you have a needy person to care for it's that much harder. He was awful at first and I felt like a worn out dishrag but things have and still are improving. Resentment can build up fast so it's best to have a talk with her and try to reach a happy medium. One night I stood in the hall outside his room and I had a total meltdown, I was screaming and crying, never so tired and worn out in my life. He was unreasonable and I was worn to a frazzle.I felt like the lowest of low yelling at a crippled person but it all just came out. He still doesn't do all I think he should do but it's getting better and it only will if you talk about it. Maybe it's human nature to take the lazy way out? I once had a boss who told me it's human nature to take advantage of another person and to please let her know if she ever did that to me. I think she was right.

[LovingSister]

I was turning every 2 hours at the start but then the nurses, doctors, and his case manager told me to go to every 4. It seems to working out much better this way. He has a lot of meat on his bones and his skin is still in very good condition. If that changes I will cut back to 3 hours depending on his needs. I knew what the deal was when I took this on so this is one aspect of his care that I cannot complain about

[GoldenYears]

Want2Help, it is wonderful that you are trying so hard to help as a friend. You have a big heart.

You unfortunately began as a Caregiver very early in the disability dynamics your friend is now trying to adjust to. Six months is indeed early in the wider scope of time. Worse, nobody trained you. How in the world could you be prepared for what you are now facing?

I know from my personal experiences with PawPaw (C4/C5 Catastrophic)that the first year was a horror. And, his needs were great. They still are.

Your friend seems to be doing the right things for herself, actually. She just can't do many things yet on her own.

To give you a perspective on all this, damage to nerves and nerve bundles take one year for EACH inch of damage to heal. And sometimes that healing won't mean a return to what she once was. It could mean very simply being able to move one knee or move one finger. Slight improvements matter and we cannot view a disabled person's improvements by improvements made by those who are not disabled. I had a bad habit of judging PawPaw's improvements or lack of improvements, and had to learn to stop doing that. Quads and Paras are a whole different ballgame.

It's not at all uncommon for Patients to develop issues with Caths and fear wetting on themselves or wetting the bed. Withholding fluids is not the thing to do. You want her urinating, even if it's an inconvenience. Also, readjusting position every two-three hours is absolutely vital and it's wonderful she wants to be turned. That is a really good sign! I would also add here that PawPaw could not in any way roll on his side or change positions on his own, even with all the physical therapy he received, for 8 solid months.

Everyone who cares for PawPaw has gone for formal Nurses training specifically for the care of Quads. We learned the hard way that few to none of the inhome Caregivers had any training at all in such care. I know that none of us were prepared at all for what we suddenly had to face when PawPaw came home from the hospital.

If your friend's care isn't something you want to do, I want you to know that doesn't mean you are a bad person or bad Caregiver. My heart really goes out to you because I know you are really doing everything you know to do for her. And yet, as so many of us are aware, that care seems never to be enough.

If you decide to continue her care, please be aware that the first year of a disability is plain and simple awful for the Patient and the Caregivers.