I know I ask questions about this but here I am again. Still floundering and just can't get seem to get back on solid ground. Can't stop being very frustrated and sad. And angry. Yup. It feels so wrong and I feel so petty but haven't been able to come to terms with the situation.
Last time, one person suggested that I could have been enabling her and WOW was that a bullseye right between the eyes. I saw that I have done way too much for her for way too long. And I have stopped.
I came to the realization that I am so freakin annoyed with ME caring more about her well being than she does. This is where I'm pretty much STUCK. Her strength and mobility have declined and she doesn't want to go to PT anymore. She "claims" she'll do it at home but it's never really happened before so....history DOES repeat itself. I do my best to NOT ask if she is or is not doing her exercises. I just can't bear the answers.
IF her refusing to remain active only had an impact on her, then big fat hairy deal, right? BUT she lives with me and hubby. And we already do most of the things. Either because of her pain or lack of strength and mobility.
I just see the future and I HATE what I see. And I know that it's 90% her own fault because she refuses to do the exercises and increase her strength and mobility. I recently told her that I am NOT doing more because she is choosing to do less. And now the battle lines have been drawn and we're both annoyed/angry with each other.
Do I have to be OK with her lack of activity which will lead her to continue to decline?
How can I not be disgusted with her lousy attitude?
Then also she made a snarky comment about me going to my daughter's without her which turned into a major blowout. I told her that I worry about her going up the stairs (she's horrible at stairs and we have to help and/or spot her), that she's going to fall and hurt herself and/or me. She doesn't get it. UUUGGGGHHHH!
After she broke her hip last year, she did great in inpatient PT and with home health and outpatient physical therapists. Then, when the experts stopped coming, she stopped, too. All she wants to do is sit in her recliner and watch old Westerns on TV. She walks with a walker, can shower (closely supervised by me), dress herself (although her choices of clothing recently have necessitated a change in attire before leaving the house!) and move around slowly with the walker.
I continually nag her to get up and walk around. I try to set up a bathroom visit every two hours so she will move around. She refuses to do any of her proscribed exercises and states that her inactivity bothers my brother and me a lot more than it bothers her. I see on a daily basis how increasingly difficult it is for her to get up from her recliner and how unsteady she seems when she starts to move around. Yesterday, she was stepping down from the house to the garage to get into the car and started to fall. Luckily, I was right there and was able to catch her and prevent her from falling, but it was not easy. I am feeling the results of my effort today! After I thought about it, I really think she passed out because I was bear-hugging her to prevent the fall and yelling "Mom!" "Mom!" with no reply from her.
I told Mom that if she does not keep moving to get stronger and build up her legs and stamina, I would not be able to care for her as I could not lift her or transfer her. I'm not sure she fully understood what I meant or even that not moving around is a bad thing. Lately, she has been making statements like, "Wouldn't it be so much easier if I just wasn't here?" or "Why don't you just cover me up and let me die?" She has just about stopped eating anything, so maybe she knows something I don't.
I do not think that I am enabling her because she really is NOT capable of doing most of the things I do for her like cooking, laundry, house cleaning, errands, doctor appointments, medications, etc.
My brother and I take turns caring for her. I spend two weeks at her house and then I take her to my brother's house for two weeks while I go home to my significant other. Neither my brother nor I want to think about what is going to happen when we can no longer care for her due to her immobility. I think, at this point in her dementia, a placement for her would be way too confusing.
Okay, time to go stick my head back in the sand.
I wish you the best!
If you can get therapy (PT) to come to the home, it might help a lot. They have a lot of experience with seniors who are reluctant to move forward with exercising and if you get a good one, they can motivate in ways we can't.
I know what you are feeling and it is valid. I know she thinks I am selfish but I can't enable this behavior and I think I was doing too much for her at first.
To me, this was a reflection of my care (or not) and I was found lacking when I finally got some help.
I certainly felt the same disgust I saw in their faces but I could NOT get that woman to get up!
There was shouting, there were tears, there was pleading, there was just plain stubborn resistance. It was awful....
charlotte
This statement brings concern, esp since you say she still drives. That's exactly what clued me in. Seems fine, can muster up for a bit in front of others, but the repetition and making mistakes with her finances, I started looking for answers and the answer was DEMENTIA. When we took the car and had to help with shopping, I discovered she also wasn't able to cook anymore.
We all get senior moments, a little more as we age, but this is different. Mistakes in finances is one thing, we all make mistakes, but when it's more than just little, worry. Repeating oneself happens too, but when the same thing is repeated or asked multiple times in a short time span, you should be considering dementia.
With dementia there are changes in perception. What some have called apathy may be perception related. They think they are fine. They think they have done this task. They think they are capable. My mother has declined more since the initial stages and when I showed her a picture of her, me and my daughter, she asked who 'those girls' are, meaning us and pointed at the pic of herself and asked if it was Nana (her mother!) She doesn't believe she is 96. She doesn't recognize herself in pictures. She repeats SO much more now! It is something you have to learn to live with (fortunately I never lived with her/her with me, it was only during visits/doc appts.) She also became self-isolated. More often she would find excuse not to join her friends at the Senior Center for activities and free food. She would try to cancel appts (would write it down but didn't follow through, thankfully, since I would drive 1.5 hrs to pick her up!)
Another common mistake we make is trying to convince them of something, or argue with them. If she has dementia, this is an exercise in futility! If she really wants to join you when visiting your daughter, she has to commit to working on strength. Statement of fact - either you work for it or you can't go. End of discussion, even if she tries to argue with you. Walk away. Tune her out. Leave if you have to.
"I saw that I have done way too much for her for way too long. And I have stopped."
It's the best thing you could do. Although it may be too late to get her 'going', it's better not to do things for her in order to keep her active and mobile. Sometimes rather than asking if she wants to do X or go to Y, just make it a statement - Com'on we're going {here} or to do {this}.
"I just see the future and I HATE what I see. "
Well, unless something changes in her, it is what it is. There's no point to hating it or feeling guilty, as that won't change anything. You have to make the decision as to what is best for you and her. If it means going to a facility, so be it. You could present this to her saying that physically you can't help her anymore, so it is her choice to either work on getting stronger or understand that she will have to move. Again, no discussion. Statement of facts, these are your choices.
"Do I have to be OK with her lack of activity which will lead her to continue to decline?
No, but it might be best to accept it. You can make a concerted effort to get her on board, giving her the choices to make, work for it or not. If not, then again, it is what it is. They ordered PT for mom after some simple falls and refusal to stand/walk (partly fear of falling), but she refused to work with them. Nothing. At my last visit, the nurse told me that when they were helping her up, she had one of those rare glimmers of thought when she said she needed to walk or would lose the ability! Unfortunately, with dementia those thoughts are usually fleeting and nothing will come of it.
"How can I not be disgusted with her lousy attitude?"
By just letting it go. We can't change others, only our reactions to what they do/don't do.
No guilt. No remorse. No arguing. Give her choices and see how it goes.
You mention there are a few places she goes and drives. If she has so much trouble walking, how does she get in/out of the car and get to where she is going? If her ability to do simple things at home are that bad, I would have even more concerns about her driving. Slow reaction time can be a killer!
We had to take mom's car away (oh that went over badly!) for her safety and others, well before the decision that she had to move to MC. Later, after the anger, she would say 'But I don't go far', which is true. Her "circle" of comfort was slowly receding. My response at that time was that I don't care if you go 2 feet - if you hit someone you will lose EVERYTHING! Even later she would tell people the worst thing she did was give up her 'wheels.' Give up? hahahaha. She didn't give anything up!
So, given some statements you made combined with her demeanor, you really should consider these might be signs of early dementia. Since she lives with you, she is safer (our mother was still living alone.) However, a number of the issues you currently have could potentially get worse, if this is really the beginning. If she isn't hard to take care of yet, mostly takes care of herself and you can tolerate her, staying with you for now could be an option. Just let the rest go. No guilt. No arguing. Try to laugh it off.
When she becomes a danger to herself or anyone else, or is too difficult to manage at home, then consider a facility (if not sooner.)
For example: I tried years ago to help mom see that if she SITS all day she is going to become weaker and weaker. When she gets to a point where she can’t get up and down on her own, we will be forced into putting her into a nursing home. I can now see her struggling to get out of a chair, etc.
There are other examples that I could include here. Bottom line, I think it is rough to deal with caregiving, especially when the person being cared for does not cooperate.
Best wishes.
UUUGGGGHHHH!
Last year had a TIA (mini stroke) then a big stroke. Vascular problems found. Not enough oxygen getting to her brain - suggestion that silent TIAs & micro bleeds had been going on. A'ha! no O2 - no attention span!
My Dad especially has been so frustrated, as you are, as he can see she needs to do more & this is the only way to recover from the stroke. He hated nagging, she hated his nagging. But he won't give up.
He found funding from senior services for more physio. She really needs 1:1 attention to do the physio. They go something like 5-6 x fortnight. Slowly it has become part of their morning routine at home. while this is increasing her strength, unfortunately it has not prompted her to do more for herself (within her limits). Her 89 yr old sister drives, cooks, cleans but she just can't - her brain just doesn't work that way anymore. She's 76.
Has your Mother had a good checkup lately? Just to check/rule out depression or other medical problems?
We did this to MIL, telling her she'd be in Nursing Home if she wouldn't exercise for rehab there. It woke her up. She exercised, and one of her sons took her nearby to an AL he owned, since his home had stairs. It was an acceptable solution for all.
Ask doctor to order some in home PT. A stranger working on the exercise issue may get more results than you. Since you had been an enabler, there is still that little wisp of hope that she can get more out of you again. Keep repeating that being in the home is dependent on being strong and mobile.
Facility I would think about doing that. Hugs to you.
No point in nagging her to do exercises or to be more active. That will only aggravate the tension between you. Your LO probably lacks motivation due to depression and poor energy.
If you and your husband reach the point where you can no longer (or are no longer willing to) do everything for her, it's time for more hired help or placement in a facility.
Twenty-five years after the diagnosis, she hadn’t been going to a doctor for 10 years—THEY weren’t helping. She’s falling and walking with TWO canes just to get from bed, to toilet, to kitchen. She knew she had to do something, so I get her into my tell-it-like-it-is doctor. Well, he did, and she didn’t like it, and we were both upset. My misplaced guilt for wondering why it happened to her, not me, changed to resentment. She didn’t do what he said—get a rollator today, get in a pool in the next week for exercise, and do NOT do PT at home—GET OUT to do it, annnnnnnd he told her he thought that the diagnosis was incorrect all those years ago. She did just the opposite of all. REFUSED to get in a pool—mostly vanity kept that from happening. I had trouble even visiting and listening to how upset she was with HIM.
She continued to go down hill. She’s been in and out of the hospital now at least two dozen times in the last three years, as she is bedridden. She’s on her fourth nursing home, and now has lung disease requiring oxygen 24/7, was sent to the hosp in a coma by the third nursing home that had a power failure and her oxygen dropped, which led to a trach and a vent. Now her options are very limited.
She turns 70 on Sunday. I moved three states away in July to be closer to my grandkids. I’m 65, and just couldn’t stay in our hometown any longer—it is so much harder to move the older you get, but we’re here, and I’m doing more for myself now. The guilt isn’t eating me up anymore. Yes, I hate what she’s going through, but she made the choices, as did I. I really did have to save myself.
She has BF from many years ago who comes three times a week to help her and visit. She and I text most days, but she never whines or complains, except for our soap storylines.
You need to set yourself free as best you can before it’s too late and your loving relationships are completely diminished by resentment. I waited too long.
PS—Sissy’s diagnosis those many years ago was wrong, according to all the tests and specialists. She got where she is due to atrophy of her large muscles from inactivity. Her brain is good, will always be bedridden and on a vent. The good news—yesterday, she FINALLY got in the water!! And NOW she says she wants the NH to Hoyer her in there at least once a week.
You may have to decide that having mom live somewhere else or creating a "mini apartment" in your home for her may give you some separation and return of control over "your household". My mom lived with us for 6 months after she sold her home. She said she would live with us for a "couple of months" (2-3). We gave her the use of a bedroom and sitting room. She expanded to the patio and bathroom. I told her that these were not her "areas" and helped her to limit her spread. She visited my sister for a month and when she came back, she was ready to move. 3 months later, she is in her own condo and doing well. I visit weekly to take her shopping and for outings and my hubby takes care of maintenance issues on a monthly basis. I realize that when mom needs to move back in with us, she'll need a mini home of her own in our household.
If your LO can't walk, maybe they can just stand up out of the wheelchair once in a while with help. Standing up at the kitchen sink was a favorite of my MIL. She thought she was doing the dishes.
Once I understood it is not Mom but a broken person, my frustration dissipated (well mostly!) and this hard life became a lot easier, still just as much work, but less stress! Now my job is to provide safety and comfort, oh yes, and entertainment! And ignore all the #$$% thrown my way!
My husband has had a stroke and vascular dementia is here.
With dementias...strokes, health issues, the person becomes apathetic. They want to sort of but really don't. Take my husband. He wants to get up and do Pulmonary Therapy, but won't walk out of the house. His reason? He can't.
And after watching both him and his mom deal with this very same issue, I am convinced that ...
they can't.
The brain simply is not allowing it.
Please consider this while dealing with your mom.
I'm going through this same thing with my husband and MIL. I've sat down with neurologists and psychiatrists and they both finally admitted that this happens.
Depression and apathy/don't care happens. And is there a way to stop it or reverse it?
I don't know.
I get upset with my husband of course but we know this is happening. He cannot help it.
Time to stop this merry-go-round, you can jump off any time...why not now?
I agree that if your mom does not want to do her exercises, moving her out of your home is fair, because it will be a physical burden on you that will be too much. But also realize she may no longer have the ability to be motivated...it may be her condition or depression. Either way, you have to do what will let you keep your sanity and live your life.