Hi all. Mom has been home for a week after being in rehab/hospital/rehab for 5 months. She was doing very well with PT in rehab, walking, etc. Since coming home she is not making much effort to do what PT tells her to do. She gives lip service and uses her arthritis as a means to not do her PT but therapist made her do it.
A little of her personality: She is stubborn and has made a habit of manipulating people over the years to get what she wants. She is always right and tells us we are the ones with the problem. All in all pretty upsetting for hubby and myself.
Social worker told her the knee pain is real, but that the fear of falling is something she NEEDS to get over or she may not improve. She didn't fall from losing balance, she had fluid on her heart that made her pass out. The therapist told her moving helps with pain (it did) and she can't wait another month to move (which is when she is due for more knee pain shots).
Hubby and I feel defeated. We thought she would be more receptive to improving her circumstances, but we think she did what she 'had' to do at rehab just to get home. TV is her source of all that is pleasurable to her and that's it. She got used to having meals brought to her, bed made and all needs met in rehab and we are not sure if this may have affected her desire to be more independent.
We are exhausted (she lives in a basement apt in our house and we are up and down stairs many times a day). PT told us 'tough love' is necessary at this point. I went out for an hour today to an appointment and she called twice and said she was worried she didn't know where I was. I told her before I left that I had an appt and hubby was home.
I am wondering how many of you had a similar situation and how did you deal with it? Husband and I are both not sleeping well and having physical reactions (stomach and head aches). This is not about me, but it is affecting us and I am worried. I am concerned about co-dependency and also that we are losing the good years of our own lives to care for her and this leads to horrible guilt that I could feel that way.
It sounds as if your mom has gotten her way so much that she now expects it. Break this unhealthy cycle now before it becomes worse for all of you.
You have the answer in your profile. You say that you are considering facility care. Yes! Go in this direction.
Placing your mom in a facility is your solution to this issue. Mom receives proper care and you resume life as her daughter and not her caregiver. Show your support by being her advocate while she is living in a facility.
Best wishes to you and your family.
I spent an entire summer going to my parents house and waiting on both of them hand and foot. Mom was depressed (common after stroke) refuse antidepressants . She sat all day, didn’t walk much . She was frequently a depressed narcissist anyway . This just made it worse .
Even my Dad sat at the kitchen table waiting to be served his meal like I was a waitress . He didn’t set the table or anything to help in the kitchen. But I should have expected that since that was usual for him , helpless in the kitchen .
I did the grocery shopping . Dad still drove, but shopping was foreign to him. He would nap in the car while my mother was in the store . They refused to pay for cleaning service or to have strangers in the house. I had Dad do some of the light housekeeping and showed him how to do laundry and how to use the microwave . I did the deep cleans .
I stopped bringing moms pills to her , made her walk to the kitchen for pills and all meals. I finally told them I was going back to my job and they were going to have to take care of themselves. I dropped meals off until Mom walked better . They hired housecleaner to come too , which they should have done anyway before her stroke.
Mom ended up walking pretty good and Dad could take her to the store again. He would go in with her to help . They managed with buying some already prepared meals , making sandwiches etc and I did still bring meals and put them in the freezer . And I took them to doctors appt .
They did ok for a few years until Dad’s cancer returned , then I helped more again until Dad died . By then Mom had dementia and she went to assisted living a year later.
The point is stop doing for her. Try to gradually make her do more and more herself . If she can’t take care of herself then she needs to go in assisted living . Keep us posted on what happens after you stop doing for her . Come back with an update , you made need some ideas on how to get her out of the house .
I've taken care of a stroke patient at home. Looking back, I don't believe the patient should ever have come home at all. The hope is always for a complete recovery even though doctors may not advise that it can happen. That's because they know better. It can't.
No one is ever the same after a stroke. You and your husband are already exhausted and at your wits' end. You might have thought that even a little improvement would make it possible for her to continue living in a basement apartment in your home, but you have little control over how much she'll improve, even if you follow all the sage advice to let her do things for herself. Her brain's injured and no longer capable of many things she used to do.
"But I just can't put mom in a facility! The sky will fall, I'll feel so guilty, and she'll hate me!" Uh-huh. That's the way it is now. Accept it, make plans, and find her the 24/7 care by professionals that she needs now. I'm very sorry for your problem.
Alternatively, but I suppose you already tried, you go for the carrot or stick approach. Reward or punishment. Punishment? The food she hates the most. No TV. No hugs. No goodnight kiss (OK, maybe you can allow that one). Further punishment? You'll sing to her, several times a day, her least favorite song. Reward? Her favorite food, the sky's the limit.
Or humor. Every time she finishes the exercises, you'll read her 10 jokes.
If you are her PoA then I would take her out for a surprise visit to an AL facility (a nice one that she could consider if she can afford it). If she wonders why you took her there you can explain that if she doesn't do her PT then this is an option, and so is her paying for extra in-home aids to help. She needs to know that she cannot stop putting in effort to improve her mobility because you and your husband won't agree to the current situation to continue as is because it is exhausting.
This all hinges on your Mom's cognitive abilities. Her calling you when you leave the house sure sounds like Shadowing, a common dementia behavior. Has she ever had a cognitive or memory exam? Does she have a PoA, Advance Healthcare DIrective, Last Will? If not, she should be encouraged to ge all her legal protections in place so that she doesn't become a ward of the county. If she loses her mobility she won't be able to live in the basement and may need to go into LTC (which is covered by Medicaid). I wish you success in working this out with her.
I wonder if your mother needs to be seen by a doctor specializing in geriatric psychiatry? My mom’s PCP prescribed these psychiatric meds, but that was after the medical team had observed her closely during those hospital stays and after I had repeatedly asked them to give my mom a psychiatric referral because I suspected her pain was magnified by high anxiety.
About your reactions, I have had the same guilt about wanting to care for my own life. You and your husband are suffering adversely with your health. Don’t ignore that. Put your own oxygen mask on FIRST, as they say. It’s hard to prioritize your own life - I know firsthand- but you have to, In order to help another. If that means your mom is given some psychiatric help so she can still function independently. Or if that means you find an ALF for her so you can visit her and watch over her care while being able to have your own life.
You have no reason to feel "guilt" over frustration that you cannot control the outcome of moms age related disease. You can control your OWN stress related disease that arises from this situation you've taken on, however, which I suggest you do before its too late. Get mom into managed care asap where she can choose to live as she sees fit moving forward, and where you won't have to witness those decisions 24/7. Autonomy is a gift you'll each enjoy.
We are one week into mom’s homecoming and while I’m happy that she’s home it has not been entirely easy. My husband and I each spoke with her physical therapist before she went down for her therapy and told her the difficulties we were having. She agreed that we have to stick to our guns a bit more and insist that she start doing more things herself.
The surprising thing is when the PT was done. She came up and told us things actually went very well. She said my mother told her that she use the microwave for the first time and is intending on doing one new thing each day until she is back to doing her daily activities.
I thank you from the bottom of my heart for sharing your personal experiences. Your tips, tricks and ideas have really giving me food for thought and have been helpful in the extreme.