Mom takes unnecessary risks and is making me crazy. Any advice?

The complete lack of realization of her situation and the consequences of her actions would really cause me to question her mental status. If her brain is not capable of reasoning on this issue, then she's not likely to ever see it your way and change. It's also not likely that she is going to use tools to help her incorporate alternate safety precautions. If she is not capable, she's not capable. It's not a moral issue, but a medical one. I know it can be frustrating, as I have dealt with the same issue.

You can either tolerate it or try to have her placed somewhere that she is safer. If you tolerate it, she will eventually suffer a fall and end up in rehab. Then, the matter can be revisited.

The issue is the stress she is putting you through while she skates on thin ice. Is this something you can accept? Basically, you are waiting for the inevitable to happen. That's why you are so anxious. To me, if she was thinking clearly, she wouldn't do that to you. So, you have to do what you feel is the right thing.

Perfectly said, ntsujimura.
Carol

Dear Tinkster;
Gosh, for a moment I thought, "Did I write a post on the forum and totally forgot about it?" Nearly word for word, you restated my situation with my mother. The biggest issue we have is that she now has a walker and will not use it at home and, just like you, if I just go get the mail/paper, anything, BOOM, she is up without the walker. I wish I had some magic answer for where you are now (because I could sure use a magic answer) but here is what I will say. I have made the house as safe as possible. She goes to adult day care 5 days a week while I am work so she will be safe (she lives with me) while I am at work. I have tried to give her modified activities that include her in the household. I have done everything but put her in bubble wrap and tie her to the chair. I guess what I am trying to say is that I am working on changing "me" and how I view the situation. It is either that or I am going to end up with a nervous breakdown/dead. I have told her, "I love you beyond words; I want you to stay home as long as you can; I will do everything to offer you activities and involvement in the household, but if you don't use your walker and you fall, it is out of my hands and you have to accept those consequences." If this is how she copes with what she sees as her loss/diminishing of independence is by really ignoring it, then I guess as long as I have done everything I can, I need to remember the serenity prayer and keep going. Good luck. You are in my prayers.

Two thoughts: I think your brother is onto something. Stop trying to please her. I know you want to keep her safe, but that may not be possible without putting her in some sort of restraints—an appalling idea. It may be best for all concerned to put her in some sort of assisted living setting and let the staff deal with her. They have practice and training to deal with difficult people, and they don't share the family dynamic. She may react entirely differently with them. And still complain to you.

Thanks for the info about the chair situation. Yes, sometimes the path of least resistance can be the most freeing. Wish you the best!

My mom lives next door, GardenArtist. We share a driveway. My brother lives there with her. We are still in the process of getting her home set up.

She will not use a scooter in stores because they are 1) nasty 2) usually don't work right and 3) people stare at her.

My brother and I feel as though we need to give this our best effort, and we won't feel we have until everything is in place in the home. They are still unpacking, we are still installing appropriate grab bars, etc. and we are still working at mom-proofing things. For example, we are putting babyproofing knob covers on the stove.

My brother said something interesting today. He said it seems to him that she is being passive-aggressively self destructive, and that all of our efforts are just bumps in the road to her ultimate destination. That we are postponing the inevitable. That was a sobering thought, and given how I'm feeling right now, it sounds right on the money.

tinkster: If it's any consolation to you, quite a few of our parents are never anything like their former selves. They become belligerent and unwilling to consider the better options.

Didn't the grocery store have a scooter that she could ride? There are no foot pedals; she controls direction, front and backward movements with her two hands.

There are also shopping carts attached to the front so you don't even need a separate shopping cart.

I was apparently under the mistaken impression that she lived with you, but in your last message you wrote that you walked to her house. Is she living alone?

Perhaps it's time for a REAL heart to heart talk with your mother as well as time to start investigating places where she could go and be monitored by staff rather than you and your brother. It does seem as though she's just not going to cooperate, and this situation is only going to be exacerbated by her insistence on doing things her way.

Thank you for the continuing input, everyone. It's so difficult online to express my mom's situation. It's so complex, and we are doing our best.

We have already incorporated (or have TRIED to incorporate) so many of the suggestions here. She is profoundly contrary, and changes her mind belligerently at every turn.

She has PT and OT scheduled to come to the house. Most times, she refuses to work with them.

We started the power chair evaluation and paperwork in June. It is still in process. I can guarantee you that if/when it finally arrives, she will hate it and refuse to use it.

It was very important to her to lay claim to an upstairs bedroom instead of converting the dining room. We have installed two stair lifts to get her upstairs (with her enthusiastic approval), only to have her say that now that they are installed, she would rather climb the stairs on her hands and knees, and what a bad idea that was.

I took her to the grocery store last night. She has always complained that she was never allowed/able to take her time at the store to see what was new. (Note: For the past 20 years or so, she never went to the store. Her partner did the shopping, and she felt she had no say or control over groceries.) So I took her. Gave her all the time she needed.

When we got home, I got her into the house first, and asked her to take the receipt and as I put things away, she could check them off to make sure it matched. I wanted her to feel she was helping. She promised to sit at the dining room table and wait for me to bring the groceries in. When I schlepped the first load in, I stepped into the kitchen just in time to see her at the sink fussing around, and she would have gone down if I hadn't dropped all I was carrying to rush to her.

By the time that incident was wrapped up, I had to just go into the bathroom and weep for a few minutes. I have severe COPD. I rarely go to the grocery store myself because of the severity of my lung disease. But at the end of a 60 hour work week, I took mom to the store, pushing her wheelchair with one hand and pulling the shopping cart with the other. I knew I would pay the price today, health-wise, but having her not even give me time to get the groceries into the house before being defiant was extremely defeating for me.

I started work at 7 am yesterday. I walked straight to my mom's house as soon as work was over, took her to the store and then kept an eye on her until my brother got home. I got home at 11 PM. I went straight to bed and woke up at 2 AM because I had to throw up and had horrible diarrhea.

I'm not saying that to complain about the time and effort. I'm just trying to say that it's hard for all four of us who are making huge sacrifices of time, energy and, in my case, health, in order to care for her. What makes me angry is that she pushes back on every single little detail.

Mom, my brother and I had a deep talk the other day. She and I had locked horns about her scuttling into the kitchen to get a glass of water, when both my brother and I were right there in the house. We have told her endlessly that if she wants something, she should ask us and not get up to get it herself. We discussed "unnecessary risk". She said, "Well if I'm not going to have any freedom here, then just take me to a nursing home." We reminded her that when she was in rehab a month ago, she constantly begged us to "get her out of there", and that they just made her stay in bed or a chair because she might fall. She seemed to think she would be able to convince them to let her do whatever she wants.

In the space of 105 days, my life has gone from one of peace, kindness and respect to being a life that I don't even want to wake up to anymore. My partner is very supportive (he's a wonderful human being), and I'm used to the mutual support and respect that we have in our lives. I am the primary breadwinner, and have a high pressure job that requires a lot of hours, though it does allow me to work from my home office. Being thrust into a world of defiance, lies, manipulation, venom and zero appreciation is killing me. Literally.

Last month I started losing my balance and experiencing "stacked" vision. Apparently, it's ocular migraines, likely caused by stress. I have lost 30 pounds since this adventure with mom started 105 days ago. And I have no idea how to fix this.

Put an alarm or bell on her person. She gets up and moves and it will go off.

Ruth, your post is not only helpful in adapting and finding ways to remain mobile, but it's a testament to inspiration, coping and the ability to gracefully accept yet turn around a situation which has occurred in your life.

As does FF, I think considering devices which help as "tools" is an excellent way of thinking positively and creatively.

Thank you so much for sharing your insights. I'm copying your post and keeping it in my caregiving inspirational file.

ruthieruth, that's a great idea referring to items as equipment to help you. I will use that approach with my elder Dad as he keep tumbling over and forgets to use his Rolling Walker... I will tell him this walker is a "tool", no different than a drill or a saw to use to get something done... that walker will be a tool, too.

Yo want to try to remember that people don't like losing their independence with age. Instead of making plans with your loved one, try doing things on the spur of the moment as they come up and see how that works.

I have a slightly different take here and maybe this might be a solution. While I am probably young enough to be your moms daughter, her history sounds exactly like mine. I fall almost weekly. And, yes, I tend to do my "riskier maneuvers" when I am aline. For me, I think it has to do with coming to accept the loss of my mobility, and having a well intentioned, but not very practical way to protest the loss of my independance.its very difficult to develop a new way of being in the world, and having to adjust to so much loss...especially for a person who used to run not only a house, but a job. I used to do direct service work with all kinds of people, before my own body fell apart. Quite humbling to have a former client be the one to teach me the advantages of using equipment. For me, the best thing I did was go see a physical medicine and rehabilitation doctor and get myself a power wheelchair evaluation for use in my home. Since I got that chair, I have only fallen once, and that was getting out of the pool. I dont consider myself confined to it. Its a tool. When I am able to, I wheel over to the bookshelf, and stand up to dust. I carry my laundry safely. I can cook without being afraid im going to drop something on the floor. My apartment was built in 1986, so its grandfathered in on the more recent changes on wheelchair accessibility, however, for my purposes it works just fine. I put some double hinged door hinges on the doors so they open flat against the wall, a threshold ramp that I got online for less than a hundred bucks, and a few simple things like hanging my clothes on a second hangar so they hang lower in the closet, taking doors of cabinets in the bathroom and kitchen, and voila. Its also nice to be able to roll down the street and get a few things at the store without having to worry about what would happen if I fell . My chair also comes apart (sort of) & I can get out and go to the fair or church ir the movies. I dont like the stigma, and had to get over the idea that I was sicker or somehow less than others because I needed this tool. It hs made my life so much better. And, my house is cleaner, too. Just a thought. If you decide to try it, be aware that medicare has definate timelines...and doctors are not always aware of these. So its a lot of callingto check. They also may reauire you to use a contracted provider...mine is hover round here in california. Hoverround is not allowed to call me, because they can get dinged badly for soliciting business so I called them almost daily to make sure my paperwork didnt get lost. The doc is required to refer to OT and PT both, for a wheelchair evaluation, specifically, and those appointments MUST be done in the same month. Keep a copy of those reports and your do tors notes and prescription, as wheelchair companies are notoriuous for losing things. Hover round kept losing mine, til they finally told me what my account number was and I wrote it on every page. Medicare provides them for use in the home, and I am lucky that my supplement covers the 20%, that medicare does not pay. Its a 13 month rent to own...saved me from many broken bones. I still exercise and do as much as I can to stay active. It definitely improved my quality of life. Now I use my "defiance" to do things I used to love. Like trim the roses.

I agree that if dementia is a factor, that has to be considered. However, even with dementia, people need to feel useful. Supervision is often necessary but allowing them to do some "work" can be good for their emotional health.

Assessments by neurologists and neuropsychologists are quite different. My husband—with PSP—has had both. His neurologists have tested things like nerve conductivity, eye movement, strength, balance, and memory. The neuropsychologist interviewed both of us for an hour so she would know which tests to give, then took him away for two hours hours of testing. Most psychological tests I know of—and I have a graduate degree in the subject—involve paper and pencil or questions and answers. Words, drawing, spatial relations, reasoning, and the like.

I absolutely understand your frustration and concern. My mom a lot! But we all need a reason to get out of bed. Your mom likely needs to feel useful.

I firmly believe that we,. as caregivers, can take away an awful lot with our need to protect. I found that out with my dad, too. There were some risks in giving him more physical freedom but there were greater (in my mind) risks in forcing him into doing nothing so he didn't get hurt.

Gardenartist listed some excellent possibilities as far as physically supporting your mom while she does things. You might want to check with a physical therapist, as well. Your doctor or a social worker can help you find someone who might have more suggestions.Consider your mom's losses and the reasons why she doesn't want to just sit. Then try to find methods that satisfy both of you.

Take care,
Carol

Do you have HIPAA rights, or medical poa? I would have a conversation with the folks who did the assessment if you do. You need to know "functionally" what you are dealing with. As in, at what age equivalent functional level is she operating?" " can she understand the consequences of her own actions? "

I know it was Neurology that did the assessment. I guess that doesn't mean it was the right sort though.

You might think about requesting a neuro psychological assessmet, which would assess her reasoning abilities. It would tell you, to put it bluntly, if you are reasoning with an adult or a 5 year old. Those are two very different approaches.

She was in the hospital in July and they (psych) did an "assessment", but I have no idea what it consisted of. She is very good at behaving "normally" in front of professionals.

It sounds as though your mom needs to be somewhere with several shifts of caregivers, an alarm on her seat and something in front of her (weighted table, desk, with an activity on it, of course) that might delay/deter her rising. When was the last time a psych saw her for a cog assessment ?

Yes, Babalou. Its been an ongoing conversation every time one of us (her children) has spent caretaking time with her over the decades. Until June, her partner was her fulltime caregiver. Many hours distant from her family, and no transparency relative to her health or situation. I know she put her partner through this for 30 plus years.

How long has she been pushing the envelop by taking risks after she tells you she won't? The reason I ask is that my cousin started out that way too. She seemed fine, except for her disability of arthritis, but she began to refuse to use her cane. Even on hilly and uneven ground or long distances she would insist she was okay. I would question her about how dangerous it was and how her falling wasn't just a problem for her, but for me who had to take off work to care for her, but she was oblivious to my please. She knew better, but would defy safety precautions and go it alone and with no cane. She kept falling and eventually had multiple fractures. Eventually, it became apparent that she did have dementia. She could read, write and balance the checkbook, but she could not realize she needed her cane, that she needed to bathe or that she shouldn't eat spoiled food.

I would carefully consider any subtle changes to see if this is the culprit.

And regardless of the reason she is acting this way, whether she is suffering dementia or she is in defiance, what can you do about it? I think the only answer is to never leave her unattended. That's the only way to ensure she doesn't walk improperly or take unnecessary risks. Obviously, your pleas don't matter. I wouldn't think she is going to change.

Tinkster, have you told her that? Not in the heat of the moment, after a fall, but when all is quiet? Is this a self destructive urge?

My mom's MS has been this bad for years, so it's already done its "get worse over time" thing. I've talked to the local MS support group. I've talked to her primary doctor. I guess the point I'm making is that if her mobility issues were a new or developing thing, I could see her grappling with it and being in denial etc. But this is not a new thing. And I know for a fact that this behavior is not a new thing, either. But it has to stop. If it doesn't, we will not be able to care for her at home.

Tinkster, my own Father had a simular yet different disease process called PSP, and I believe as Gardestated, he was always pushing the boundaries and limitations of his disease progression in an attempt to defy it, part of his masculine pride. It is a very sad and frustrating position for you and your Mom. Unfortunately my Dad is no longer with us.

GardenArtist, she has several styles of walkers, a scooter. Like i said, my mom has had MS for a long time, so grab bars, etc are a way of life. But she falls when she uses the walkers, too. That is why we insist the she let us know if she want or needs to go from one place to another -- so we can stand by to assist. She understands the consequences of falling. She apparently is able to convince herself that she wont fall.

I'm just wondering if you had considered contacting a MS support group to get some advice on your mother's situation? In addition to the cognitive issues raised here, I'm sure there are others that affect people with MS, such as the knowledge that they're dealing with a degenerative disease which will never get any better but will get worse over time.

That might be part of your mother's resistance to caution - she may be trying to defy the limitations of the disease.

Wish I'd known she has MS when I responded. That makes a huge difference. Does she use a wheelchair? Has your house been "adapted" with grab bars, and other devices?