Please be honest, what is it like caring for a parent with limited mobility?

When a person needs your physical presence to be able to move around, it doesn't matter if you need a shower, a little privacy, or me time, even for one hour.

Their schedule is now yours, whether you have to do something or not.

The thoughts, constant awareness of another's needs never stop, even if that person is asleep. That causes stress.

As caregiver for my mother, who was morbidly obese and had all the joint and walking difficulties that go with that, I can tell you that caring for someone with limited mobility is challenging at best.

Family was no help at all. It was up to me to find a handicap-accessible van with a lift so I could get her in and out of the van after she could no longer step up into the van with a step stool and me supporting her from behind to make sure she didn't fall.

So once the van was obtained, then it was up to me to get her where she needed to go. I worked from home, so while I was available to do it, it wasn't always easy to get away - and any sort of outing with Mom was a major undertaking due to her mobility issues, so it wasn't like I could just take her to a Dr. appt and leave her there and pick her back up later.  It was a 2-3 hour endeavor to take her to any appointment. 

Example:
Simple trip out to breakfast with the family (my adult siblings).
Get mom up and TRY to get her to shower so she is clean and get her to brush her teeth. (Sometimes the most difficult part.)
Get her dressed.
Now she wants to lay back down because she's tired from the effort it took to do these tasks, but we're going to be late if she does, so I urge her to just sit in her recliner and rest for a bit while I get her wheelchair around.
Get Mom into the wheelchair and out the door, down the house ramp to the van, and get her wheelchair up onto the lift for the van.
Strap the wheelchair down and lock the wheelchair wheels so she doesn't roll off the lift (had a staff member at the NH make that mistake once - I had to catch the chair so it didn't roll!).
Raise the lift to its highest point, then run around the side of the van and climb in the side door, between the seats and into the cargo area so I can pull the chair into the van with Mom in it.
She's uncomfortable riding in the wheelchair, so she has to transfer from the wheelchair to the van seat. Another tough negotiation to accomplish in tight quarters.
Finally get her settled and strapped in (seatbelt barely fits her, even with an extender).
Off we go.
Drive all of 5 miles to the restaurant, get out and do the whole process in reverse to get her into the restaurant.
Again, family is no help other than being there to hold the restaurant door open for me as I push Mom into the restaurant in her wheelchair.
Some days, I thought it would be easier to put Mom on her power scooter and walk beside her for the 5 miles to the restaurant. Sure seemed it would have been faster some days.

And the tripping/falling - in the last 2 years of her life, Mom fell more than she ever had in her whole life, and sustained very serious injuries. Sometimes it was because her knees were so bad that she couldn't seem to pick her feet up and kind of shuffled when she walked - and if she walked more than about 20', she would start tripping on anything - even a flat doormat like businesses use.

All in all, I have to say Mom's lack of mobility was one of toughest parts of caregiving for her. The other tough part was her stubbornness. She refused to do any sort of physical therapy to even slightly improve her ability to walk on her own. She often refused to shower or even wash up or brush her teeth. Once she went into the NH, they couldn't *force* her to do those things, so she often went unbathed and without her teeth brushed. It was no way to live, but it was her choice to be that way. (Let me say this behavior started way before any sort of dementia set in - the dementia just made it worse.)

Limited mobility--and it may become total immobility, if the person lives long enough or has dementia--means that you should have two people available to life the person, transfer him, turn him in bed, get him in and out of chairs, the bath, the toilet, wheelchairs. This to me is the hardest part of elder care, the immobility (total or partial, both can be very difficult). You may find a home health care aide who will try to life the person on her own, but this is dangerous for both your FIL and the aide. Once there are significant mobility problems, long-term care becomes the one option, all others are much more expensive. This is very sad but true: most of us cannot keep our parents at home forever.

Teri4077: Thank you! I just told the cold, hard facts about caregiving. And usually my methodology will be a simple # list that makes it easier for  people to read.

Raven, where are you? We hope you're OK. We haven't heard from you since your original post but your question has sparked quite a response. There are 65 answers right now (3/24/18) and we'd like to know what hubby thinks. I hope he's not mad at you for asking on this forum.
Can you please get back to us?

Raven, Yes, please come back to us. You have some great responses.

What is it like? If you have ever read Dante's Inferno that is a clue. It's beyond hell. You watch a person you once knew wither away more each day and you are stuck in between grieving and desperately trying to hold on to some of your own health and live some of your own life. Pretty much your life is drained. I wouldn't wish this hell on anyone.

I am at early stage of these decisions, myself. The only thing I know for sure is that if I move my housebound, eventually bedbound mother to my home...i must be able to afford at least 12-hour care every day. I think I can, using Mom’s resources. What I don’t know is whether any of us will look back and feel it was worth it.

I am a step away from adding a studio apartment to my home to be Mom’s apartment, since the only other space is on second floor, and even with a chair lift, that has to be seen as a temporary step.

I love fact that this forum responses run the gamut...from “here is how we make it work” to “never ever again—run!!!”

Truly, these are incredibly personal decisions, and there should be no judgement on snyone as they find their way!

The Plains, You are EXACTLY where we are with my mom; she's housebound (temporarily, she says), can hardly get out of a chair, and barely walk, but hanging on by her teeth to her apt and her cat. It's taking a village to keep her there. Be VERY careful about taking her into your house; it will affect every aspect of your life, even if you all get on very well, and it will get worse, as you say.

Thank you, Milly!

wow! thank you so much everyone that took time (precious time) out of their day to respond to my question. what so many of you have gone thru to care for a loved one is amazing, and honestly a bit heartbreaking. I wanted to reach thru the computer and hug you all. reading these I am so grateful that we can approach the situation with our eyes wide open. hubby has read every single response and it was eye opening and humbling. he truly had no idea what was ahead for his dad, and hearing it from other people has really put things in perspective. after some research on PD and what his dad's future will most likely look like, he realizes we are not physically or emotionally capable of caring for FIL long term, and for FIL best interest he will need to be in assisted living where trained professionals can give him the care he needs. god bless all of you {{{{hugggsssss}}}}

oh, this is good news, Raven88! I'm very grateful that you shared it with all of us! Please keep us posted.

God Bless you both. You will be able to love him and give him special times on this difficult journey. I am so happy that you made your decisions from an informed position, so much easier to not doubt yourselves during the hard times. Hugs 2 u both!

Raven, I'm so glad the answers here helped you and hubby make that tough decision. It will not be easy at first, but FIL will settle in and eventually be ok with where he needs to be, and you and hubby can rest easier knowing that you made the right decision for his care and safety - and for your own lives as well.

Dear Husband of Raven88, You can show real love for Dad by finding an appropriate placement for Dad. Please,please, take seriously all these posts from people who've been there! You will thereby show true love for the dear lady you married, and vowed to love, honor, and cherish.

Taking on the full time care of someone who's almost bedridden is going to test your strength. You have to provide everything that they can't do for themselves anymore. The first thing is their cleanliness. YOU have to be the one to clean them and their toilets and surroundings and linens. Bedridden is better than almost bedridden because if they're in the bed that means they can't get hurt or have accidents, or start fires. That also means then that you provide meals and entertainment and maintenance much like being a mother. I wish you the best.

Your husband does not have the right to ask you to do this. He needs to go take care of his dad a couple of days and then come back and discuss it. All I ever wanted is for my dad to get back on his feet after his blood clot. The hospital released him to home on a Friday evening and I could not get any help. He is bed ridden and I cannot even move him up in bed. I am going to find the best rehab and have him go there for a couple of weeks

Praying that all goes well for you, katgurl58!

Call your local HomeHealth and/or Hospice - ask them to send you information on how to tend a person with Advanced Parkinson's.

Tending my DH when he became bedridden was doable because it was just he and I. Not even pets, just DH & I.

Sadly, you will be expected to take all the caregiving on yourself as well as continuing to service your DH. You will become resentful. It will most likely destroy your marriage.  Is this what your DH is ready to accept?

My suggestion is to send your DH to go live with and tend for his Father on his own - it might be the only way he will ever see the whole picture. I give him 2 weeks at the most before he sees the light and changes his mind.

Tending Advanced Parkinson's is like taking care of a toddler who ages and regresses at a steady pace.

Same here only it's alzheimers dementia.

I have to say after reading these responses, don't do it but find a facility to put him in. I hope you didn't bring him into your home for your sake !

Seems like the only way it works is if you're athletic and your parent is on the
lighter side. I haven't even done 24/7 care continuously, but rather in weeks at
a time in response to hospitalizations. The more I helped, the more he wanted.
In some ways, it seems he enjoys behaving like a child. And no, there isn't any
alzheimer's.

I couldn't imagine doing it 24/7. Just with the stretches of time I've done transferring
him I twisted my ribs and reinjured my back (from 2 car accidents). It's difficult
to imagine the non-stop needs of a parent who has limited mobility, etc.

Best of luck! Glad you've chosen to find quality care outside of your home. Because
at the end of the day. Where would he be if both of you lost your jobs and became
ill.? Because that unfortunately is a real possibility.

Raven: Glad to have you back!

katgurl: Praying for you!

Been there and still am. Not an easy task. We chose to stay with my mom because of the cost of hourly homecare $20hrly ( whoa) so it will take a toll on you physically and mentally. Good luck!

Hi Raven - I see that your posted dates back to March....  Are you still looking for advice?  I have plenty to say about this one!