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seaglass5 Asked May 2020

What are my options for getting respite care for my caregiver husband?

I am in a wheelchair with severe balance issues and spasticity in one leg. My husband and I live in an ADA apartment, but I fell trying to use the toilet by myself because the toilet configuration and grab bars cause me to have to lead with my weak leg. As a result, I am no longer able to use the toilet without his assistance. I've looked into various assistive devices, but nothing is tailored to my apparently novel problem.


He's a good and caring husband, but my new dependency is getting us both down. We are low income. I looked into having a caregiver come in for a respite day for my husband, but it would cost about $100 per visit because there is a three-hour minimum. All I need is someone to help me use the toilet a couple of times while he's gone. Should I be calling around to more places or are they all going to cost about this much? I'd sure like someone who is caring and kind. I know. That sounds like an impossibility, finding someone who is caring and willing to come for a short time and is affordable.


Any ideas?


Thank you.

Llamalover47 May 2020
Perhaps you can try a bedside commode.

pipruby May 2020
I found, by accident, that a barriatric (extra big) walker without wheels can be turned with the front toward the toilet tank and be used as safety rails. They are more sturdy than the other temporary toilet rails.

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Isthisrealyreal May 2020
I haven't read any responses, so forgive me if I am being redundant.

Get a commode and then you can place it where it works best for you.

You can then empty it out and refresh it, alleviating the need for your husband to have to do this for you.

A bucket with a lid to transport waste to bathroom, a spray bottle of cleaner to freshen commode and a small bucket for water to place in commode for ease of clean up. Easy peasy.

Or you could wear depends while he is gone.
Llamalover47 May 2020
Isthisrealyreal: Spot on accurate!
SofiaAmirpoor May 2020
There is an amazing agency that has 30,000+ volunteers for seniors all across the US. If you live in a very populated area, you might find 100s in your area. Check it out, it's https://www.elderhelpers.org/ They volunteer with all kinds of things and it's all FREE!! It's always my go to place when someone needs assistance that they can't afford. Good luck...
purplebadger May 2020
Wow! That's great to know! That could help me with my mom! Thanks for the info and God bless you!
my2cents May 2020
Also look up Disability Bathroom Rails. They make all different shapes, styles, etc. You might find something that would better support you for transfer. Of course, you'd had to ask apartment about installing and I recommend getting someone else to evaluate what you think might work so proper measurements, etc can be done before ordering.
Do you have a crafty relative that is good with woodworking or construction?? You might be able to show them the problem and a solution found. I've done several modifications, on my own, for my mom based on watching her, figuring out the struggle, and making something that works. And I'm certainly no Handy Dandy where it comes to building things. My brain just finds solutions to problems!

my2cents May 2020
Someone mentioned here to have physical therapist evaluate the bathroom set up to make it easier for you. You might also ask the apartment manager if they have another floorplan that would work better for you. Often they have the same floorplan as you but reversed. It might put toilet on the right side of the bathroom to let you use the stronger side of your body. The physical therapist might also identify a piece of equipment to help you. I needed something that would serve sort of like an armed chair to give my mother support when pushing up from the pot. I didn't find what I needed in the US, but UK had exactly what worked. Look at this item: Broadstairs Toilet Frame with Adjustable Height and Width. The instructions for it had the rails in front of toilet, but I disassembled using the pushbutton releases and put the rails behind the toilet - works great for her.
If using the toilet is only issue when hubby goes out. Maybe you could get a portable pot and place it next to a wall (to avoid tipping) in a way you could roll yourself right to it, stand, sit on the pot, and then get back in your chair. Pads or diapers while he's out is option, too, and neither of you would worry about a fall trying to do a transfer alone.
Health care assistance is expensive. Reaching out to relatives might find a volunteer, but don't bet on it if you haven't already seen them step forward. It's possible you have a neighbor in your apts who would work for a cheaper fee as on-call for a day when hubby goes out. (No middle man upcharges like a home health care is going to get). Work out a deal with advance notice that hubby will be gone from 1-5 on a certain day, can you come to help me w/toileting maybe X number of times while he is out? They don't have to sit in your apt earning an hourly wage and all you have to do is call. If they don't work anyway - it would be a little cash for them.
MrsHoover May 2020
If you are in the US, you might might have a senior 501 c(3) human services organization near you. Illinois has many of these based on townships. I was sole caregiver for my mom for about 20 years and now for my husband going on 3. They provide at a discount home aids for up to several hours a day. They also administer President Obama's senior program for free Respite Care. They actually mandate a minimum of four hours per appointment that is basically free. They can also supply lists of the type of informational resouces you're looking for. If you can't find an organization, call your your county or closest hospital and ask for their social services department. Good luck, you definitely was the husband to get burned out.
RedVanAnnie May 2020
Home health care will generally cost the $100 or more dollars b/c they do have 3 and 4 hour minimums. That is reasonable since schefuling, time and travel make it impractical to go anywhere to work for only an hour or less. most clients have an aide do light domestic chores during the time they are in the house.
Is there any kind of volunteer senior services group or perhaps a group affiliated with a church) in your area? Some of these groups have volunteers who run errands or take people to doctor's appts. Maybe they would have someone who would offer periodic respite care. Even if they do not offer it right now, your making such a request might get the agency to think about adding respite care to their program. A volunteer probably would have no special health care training, so it would depend on the level of help you need.
If you had to hire a regular health care aide from time to time, it might be worth the money to give your husband a little "vacation."

Peanuts56 May 2020
Have you considered having the bathroom issue evaluated by an occupational therapist? The physician would need to order the evaluation and it would be covered by insurance. In terms of respite for your husband, do you have any family, friends, church friends who may be able to assist? In my area, the county area agency on Aging has a caregiver registry to hire private help. Maybe your agency has such a list too. The advantage is that you pay the caregiver directly, no agency fee involved. The rate you've been quoted is about right. Even though you have an ADA apartment, the therapist may have another way to transfer that doesn't involve leading with your weak leg.

TomUs225 May 2020
As I see it you have a couple of options. 1. You can call local churches and see if they have volunteer programs that would send a person over for a few hours to give your husband a break. 2. You could wear an adult diaper while he is away and he could help you change it when he returns. Good luck.

NYCdaughter May 2020
Speak with a state social worker or other organization that connects people with assistance for aging and disabilities. They can also advise on the equipment that is available for people with disabilities. There might be free assistance available.

cjwilson May 2020
It depends on the agency you are using, many do have a minimum hours per visit. I live in St. Louis, Missouri, here most agencies have a four hour minimum. That being said there are also home health agencies that have no miniumn, however the agenceies without a miniumn often charge a higher rate per hour.

I would suggest that your reach out to your Area Agency On Aging, (AAA). The AAA in Missouri does offer some respite hours to caregivers at no cost.

Cpw6960 May 2020
Good morning. I have been a full time care giver. For my 92 year old Nana. For the past 7 years. With little to no help!

im not sure what state your in? But I know in Maryland. If you receive medicade, not Medicare. Do to your income. Then you can usually get state assistance with a care giver. Through your local government. Usually the department of aging.

unfortunately because of her assets, retirement, and SS. We do not Fall into that category.

Are local governments. Offer different grants. To help with caregivers, and offer a little help. We just revived one for $500. Which in the big picture is not much. But we could choose whoever we wanted. To give me some free time. It could even be a family member. In we were able to choose how much we were going to pay them. In Howard County Maryland. The cheapest you will find someone. Is around $30 a hour. With a minimum of 20 hours a week.

in most caregivers at that rate. Refuse to do any heavy lifting, on the toilet, shower etc. Which is were most people need help.

Im going to attach the government agencies. That have been a little help in my area. They may have the same ones in your area.

Earnestine M. Thomas, MSW
Caregiver Specialist
Howard County Office on Aging and Independence
Department of Community Resources and Services

Ricky6 May 2020
Have you looked at any speciality commodes? Some will fit over the existing toilet. Some have arms that fold away. Medicare will cover with doctor’s order. Search the internet and see what might work. Maybe a physical therapist can help you identify one more suitable.

Please be careful with hiring a caregiver. I have heard too many stories of robbery and theft from someone who takes advantage of old people.
Cpw6960 May 2020
In family can be the biggest thieves!!!!
dogparkmomma May 2020
Have your doctor write an order for home OT and PT evaluation for mobility at home. They can evaluate for types of equipment, additional rails to help you be more independent. Call a local home care agency to ask. Medicare should pay for it. If other apartments where you live have different bathroom configurations, maybe changing apartments is an option. It may sound extreme but finding staff to help you will be hard too. At least discuss with apartment staff to see if it is an option. The suggestion of a commode is a good one too.

PatienceSD May 2020
Keep looking. 33.00 an hour is too high. And check with Medicare to see what they offer
Cpw6960 May 2020
Medicare does not offer home care givers
Worriedspouse May 2020
In the state of Maryland, the Agency for the Aging has a program call Assistance for Respite Care (ARC) which provides financial assistance to family like yours to find caregiving. They give people a set number of hours to use a month and you tell them which care company you want to use and they will pay the company directly. It does not pay all of the cost but 90% of it. It really helps. So, contact your county’s office for the aging to find out,
Cpw6960 May 2020
Does that apply? If your family member is considered over the low income limit. I’m in Maryland. In can not find much help at all. After 7 years of taking care of my Nana. We are just now in the middle of receiving a $500 grant. At $30 a hour. That means I can receive about 17.5 hours of help.
CATMH May 2020
I'm so sorry your husband and you are having to go through this. I wish you had more care available. I have two suggestions, and neither is ideal:

1. Try to find recent immigrants to this country. Sometimes, recent immigrants come from a culture where elderly people are respected, and they are warm and loving. Before I quit my job and came home to be a full-time caregiver, this really helped me.

2. Start using disposable briefs. Not pleasant at all, but you won't have to worry about falling trying to get on the toilet, and you won't have to pay expensive caregivers.

If you find better answers, please make sure you post them here. We all need all the help we can get.

funkygrandma59 May 2020
I was in a similar situation with my husband who is bedridden and under Hospice care. I was needing someone to just come for an hour every morning to lift him out of bed and put him on the bedside commode. I called every agency I could find and like you discovered they all have at least a 3 hr minimum. I was asking everyone I knew if they knew of someone and eventually I called our local Senior Services. The woman there gave me a name of an aide that worked for them for over 12 years (she was no longer working there), so I called her, had her come to meet us, see if she could comfortably transport him and then told her what I could afford to pay her (as we aren't wealthy either)and she has been coming ever since. She also has other clients that she sees through out the day. I know a lot of her CNA friends work like she does, an hour here and a couple hours there. Hopefully you can find a CNA like that , that is not affiliated with an agency. It will be much less expensive for you. Good luck and don't give up your search. There's help out there.

newbiewife May 2020
A short term solution might be for you to use a commode while your husband is out of the house, if you can safely transfer to that on your own. I feel for you and your husband, and it's so nice that you are trying to think of solutions so he can go out.

97yroldmom May 2020
Here is a link to your local Area Agency on Aging with helpful contacts.

https://www.o3a.org/

Grace21 May 2020
Greetings:
When I was caring for my mother I contacted my Area Council on Aging and they provided money to pay someone to come into my home and sit with / assist my mother. I was able to use the money to pay someone I know or an agency. If you are low income and receiving medicaid you may be able to get assistance from medicaid as well. I hope that this works out for you and your husband.

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