Hello everyone. I am a new member here but not new to caregiving. I have been a full time caregiver for my 72 year old mom for years now. Thankfully I am getting paid to do so and she has good insurance and they pay for all the equipment and supplies for the most part. She has a host of medical problems including incontinence/ over active bladder and I have watched her lose all her mobility over the last 10 years. She is amazing and we get along like very well. For the last few years she has a power lift recliner she would sleep in and spend all day in and only get up to do a stand pivot transfer to a bed side commode right in front of her chair. And did that with me helping her pull her diapers up and down. Well about 4 weeks ago she fall during that transfer, and broke her leg bone down by her ankle. And it has been a total stressful nightmare since. She spent about 2.5 weeks in and out of the hospital and a TCU unit. First time she tried to come home she could no longer do the stand pivot transfer and we were so tired she slept in her chair that night and the AM there was piss all down the front of the chair her diaper was 2-3lbs of wet. Went back in and they transferred her to a TCU unit in a nursing home. What a horrible place that was OMG I would not leave a dog in that pace. They told us she will lay in that bed for 23 hours a day and only have PT get her up for less than an hour a day. Well at that time we did not have a hospital bed. So I rushed and over paid for a bed to get out of that place. In the hospital they had a Purewick like thing it's not the tube but a flat pad and that worked very well for keeping her bed dry 24/7. So I also ordered a Purewick System. They placed a catheter before going to the TCU because they did not have a Purewick type system. Long story short is she is now home with the Cath but she hates it, it bothers her, I keep telling her that thing is pretty much what is keeping her home. At the moment she can still stand pivot and transfer but I have to bear hug her and nearly support all her weight while she does little side steps. That's ok for once or twice a day for poop but if I had to do that all the time my back would be shot it already hurts now. I can't do that 10 times a day for pee. Long story short home PT and OT thinks that being in bed with a Hoyer lift is what she going to need long term. I don't mind doing that but dealing with the pee is my hang up. I will help her do a bed pan for poop. But 10 times a day doing pad changes bed changes etc. for pee. I will do nothing but that and have 0 time for my own stuff for my own wellbeing. I want her to keep the Cath but I know the risks and the docs don't want it long term. I am ok with everything but having to do that nonstop pee bed pad changes. She has of yet not been in the bed or tried the Purewick System, she don't think it will work well. She was pretty much chair/bed bound before so I guess not a lot is changing but could do her own bathroom stuff with help for transfers. I don't know what to do. Anyone have any advice!
"...72 years old, living at home with arthritis, depression, diabetes, incontinence, mobility problems, osteoporosis, and urinary tract infection."
But really, is there an overarching diagnosis of a bigger health problem? None of the issues you listed explain her poor condition at such an early age. Only asking because we can give you the best guidance when we have as much accurate info as possible.
She can realistically easily live another 10+ years. Do either of you get out to socialize much? Are you earning enough for your own senior care years?
Do you live in a very rural area where there's not much choice between facilities? If she already qualifies for Medicaid, then consider a faith-based facility that accepts Medicaid. Often these types of places see caregiving as a mission and thus the quality is higher than a county Medicaid facility. My MIL is in such a place, in LTC on Medicaid. Even has a private room. She gets excellent care, the staff is very caring and she gets way more socialization than she would if she were her home.
Research what's available in your area. Don't tell your Mom until you find a place that's really nice. She may have an irrational fear of NHs from a past bad memory of a relative. Newer places can be so much nicer and better run. They do exist.
Respectfully, your Mom is not being fair to ask you to sacrifice so much of your life (and future health, finances) just so she can be "warehoused" in your (or her) house. Once she's gone (and she will be gone at some point) then you will be left with tatters if you don't have a reasonable caregiving plan.
Caregiving only works if it works for both parties. It's working great for your Mom, but not so much for you -- no matter what your emotions say about it, the reality is that eventually you will burn out, especially without outside help. Finding alternate care for your Mom doesn't mean you don't love her. No senior "loves" the thought of going into a care facility. But many who do often adjust (like my MIL) and she's 3 miles from our home, and we have our lives and our back muscles intact. I wish you clarity, wisdom and peace in your heart as you think through the entirety of your current plan.
I am sure there is more than one NH in your area. Tour some others until you find one that you like. Your mother is not going to get any easier to care for in the future. Ask anybody here, it's only going to get worse.
And for heaven's sakes, get your life back.
I don't know if it can really get any worse, I mean once your bed bound thats pretty much the end of the line.
What if there is no solution to all the bedchanging? It seems that your mother may be at the point where she is exceeding your caregiving capabilities? What is her financial status? Are you her POA/HCPOA? Can she pay for a facility? Could she become Medicaid-eligible?
It seems that you have dedicated a lot of your life to your mother. How many years have you been her caregiver? What happens if you become injured with the constant physical demands of caregiving?
I don't know what happens if I become injured. Just work though it I guess. She has pleaded with me for years to not stick her in a "rest home" and I could not do that.
On the practical side;
Lifting Machines.
Please don't injure your back. I speak for the bulging discs I wish I did not have.
There are unmotorised sit-to-stand machines, the person uses a bar to pull on but needs standing leg strength. It has a ledge seat too. But multi times a day to bathroom & back - very time consuming & still physically demanding for both of you.
Consider the Hoyer Lift machine.
It is cumbersome & better with 2, but with training 1 strong caregiver may manage ok.
Urine.
Is it an indwelling urethral catheter? Would your Mother be willing to consider a permanent suprapublic catheter instead? Many older or disabled people have them to avoid excoration issues. I believe they have less risk of UTI than indwelling. Obviously get your own proper medical advice for this.
If you have a continence clinic or service, these people are the professionals & can give much good advice.
Hope some more answers arrive soon to help you.