Status
Not open for further replies.

AngelaRenee

Active member
Joined
Sep 11, 2012
Messages
68
Reason
Loved one DX
Country
US
State
Ohio
City
Cincinnati
Reflecting on today. I care for my mother Monday through Friday usually 9 a.m.-7 or later to help with dinner. My father has a pretty physically demanding job, but takes care of her nights, mornings before work and weekends. I recently put in my two weeks notice and my weekend retail job so I could have a few days to myself. My last day at work is Saturday but I'm still overwhelmed. My dad doesn't really get a break unless I am there, so I make sure to bathe her during the week, flush her feeding tube, help feed her dinner etc. She also smokes cigarettes but is having trouble with drawling the smoke into her mouth all of a sudden. I am trying to quit b.c. I picked up the habit again and seeing her struggles makes me want to quit so when she has to I won't be smoking. My sister suggested we take shifts two days out of the week but she has a bad back and is unable to life her like me. I suggested she get a Hoyer lift but she said no right away. When I go to my boyfriends at night my mind races. I'm not ready for what is to come and I want to keep my mother at home as long as she is living. But what about home healthcare? Its very expensive and I just can't picture hiring a home caregiver. It also sounds pretty expensive. Ugh. Its hard expressing myself outside of this forum. I hope my constant rants don't irritate everyone. I know we all have our own trials and tribulations.
 
angela, have you talked to your dad about hiring someone? I am sure he is exhausted too, even with all your help. I was a little confused--who is saying no to the hoyer lift? It is a very helpful item for moving someone. caregivers do need to protect themselves--a back injury would really be terrible. maybe your sister could do a weekend shift when your dad is there--give him alittle break but at least have help with the lifting.

you could check pricing in your area--at least you would know what it costs. I pay $15/hr for 4 hrs per day 5 days a week. I use an agency, but a cheaper alternative is hiring privately.
 
We have looked into it but its just not feasible right now. He pays me 100 a week for housekeeping and caregiving but even struggles with this. My mother worked in a nursing home and doesn't like the idea of a Hoyer lift. But I'm afraid she might fall when we are trying to use the restroom. She tends to bend over now when standing. If I tell her to try to straighten her back she does a little. She cannot turn at all either. My sister has to support herself financially and helps out when she can on weekends.
 
Last edited:
She will have to use a Hoyer lift eventually whether she likes it or not unfortunately. My aunt was really resistant to any help with lifting or turning. Was awful. We finally had to say fine then you will just have to sit there. she didn't want to use any special seat for toileting either. She was in total denial. Poor lady had a hard time accepting all of the changes with each progression phase. She needed a loving, but firm hand. Tough!
 
Angela, talk to your local ALS chapter see if they have a loan closet. maybe they have a easy lift or a pivot that you can use for a while until she absolutely needs the hoyer.

You are such a good daughter to help your dad and mom! I am sure they appreciate you. sounds like your sister wants to help too...don't shut her out because of her back. maybe she could take an overnight once a week so your dad could get some uninterrupted sleep. she would not have to lift your mom, just roll her and adjust her in bed. she could do the shopping and the cooking too.
 
Angela, you are a good daughter and no one here minds your rants. You need a healthy outlet and we are here for you. Go ahead and let all those feelings out, it is good for the soul and helps lighten the load emotionally. Sending hugs.
 
Angela,
I just wanted to chime in here and say what a wonderful daughter you are. You are such a blessing to your parents. God bless you! I wish I could do something to help all of you. But, in the mean time you will be in my prayers. Kim
 
Angela, so sorry you are having to go through this. Everyone is right - you are a wonderful daughter. As for the hoyer lift, it's a God send. My husband is bedridden and weighs 200 lbs. I can barely turn him bed. My CNA, who comes three times a week, helps me get him in a chair so we can change his bed linens. There is no way we could do that without the lift. As long as your Mom is not on a ventilator, Barbie is right, you can find help pretty reasonable. Better yet maybe volunteers. We as caretakers all share one thing in common - we love the person we are caring for. It is overwhelming and trust me it's ok. Rant your little heart out, we all understand.
 
Tim has had to go through a lot of changes, and challenge to his pride since he developed this disease. There was always an initial struggle but once he connected he usually found that it made things easier for him and on me. I remember just before using the hoyer lift he would stand while using his walker, and I would bend over and move each foot forward for him. Sometime I moved one too far forward and he felt like he was going to lose his balance, and that slight shock would knock a huge chunk of energy out of him. When I told him I couldn't do it anymore, as it was hard on my back, and I was afraid he might fall, he finally consented. After using the hoyer the next few times he said that he actually preferred it because he felt more secure, and it saved his energy to do other things.
God Bless you for being there for your parents, and I promise you that you will be glad you did when you look back on this hard time in the future. Also your mother will know and be reassured that she must have done something right in raising you, for you to be so helpful with her.
Sending you a hug!
 
Status
Not open for further replies.
Back
Top