My mom has had MS for over 50 years. For the past 25+ years, she lived with a partner who (as his own health declined) became incapable/unwilling to make sure they BOTH had the care they needed.
Horrible nutrition, spoiled and out of date foods, doctor visits ONLY when something became a crisis (i.e. pressure wound on foot wrapped up in duct tape instead of going to the doctor, etc.). My mom was down to about 80 pounds and spent her whole life sitting in a recliner. They had moved out of state away from family and were very secretive about their situation and health. My mom didn't see an "MS doctor" or neurologist on a regular basis, if ever. They basically would wait until an injury, illness or other situation became critical and then would take her to the hospital.
Her partner and caregiver passed away a couple of months ago, and we brought mom back to the town where we (my brother and I -- I am older by nine years) were born and grew up. We set mom up in independent living, but it quickly became clear that she needed much more care than that, and my brother, niece and I took turns/shifts of staying with her.
Long story very short, the house next door to me went up for foreclosure auction a few weeks ago, and we were able to buy it for very little money. It's a lovely home that I'm very familiar with. We plan to install stair lifts (three), and my brother is going to live there with her. My partner and I will be right next door, and we will all be pitching in to do what needs to be done. She was released from rehab the other day, and my brother is staying with her at her independent living facility until the purchase of the house next door is complete and we can get it cleaned up and get it "MS Friendly". I anticipate that within a month she will be moved into the house.
Part of my mom's ritual with me all the years I was growing up consisted of her extracting a daily promise to her that I would never, EVER put her in a "nursing home". Acquiring the home next door is the only option we have left other than an extended care facility.
Over the past three months, I've been untangling her finances, managing the closing on her out of state home (it had been on the market for 3+ years and FINALLY got an offer soon after she moved to Ohio), trying to get a handle on her (totally unmanaged) health issues, dealing with health emergencies (three hospitalizations in as many months), learning about BCBS/Medicare/Etc, not to mention my mom's venomous outbursts and downright nastiness and her threats to end her life.
Between all of the mom stuff I'm having to take care of, plus my high-stress job (I am the primary breadwinner in my own family), plus the challenges of my COPD, I am falling apart. My job has suffered. My personal relationship (with my partner) has been strained, but thank goodness it is very strong. My physical well-being is being hammered. I've had some disturbing symptoms over the past couple of months, and my doctor has scheduled a carotid doppler and an MRI. Ironically, the MRI is to investigate the possibility of MS.
How do I do what I need to do for my mom, while not allowing my own life to be destroyed? I've worked so hard to build a secure, happy, peaceful life, and I feel like it's being ripped away from me.
I continue to work on MYSELF to not be so sensitive, guilt-ridden, angry, etcetera. It's not easy. I'm so tightly strung these days that I can't seem to unclench. What I would give for one single week of peace to be able to read a book or just relax without worrying what was going on next door.
My mother had the same problem as yours with the recurrent UTIs. She is an awkward, stiff woman, so that may have something to do with repeat contaminations. Or it may be that the infections are never really cleared, so come back. Her doctor put her on a prophylactic treatment of Bactrim (800/160) three times a week. I added a cranberry capsule to her daily medications to try to help acidify her urine. We'll see how it works. We only started 1.5 months ago, so not enough time to make any statements yet. The tri-weekly Bactrim treatment is not formally accepted, but many doctors are trying it for recurrent infection with E. coli -- the main culprit of UTIs in women.
Mom has been in the house next door to (with my brother living with her) for a few months now. I work from my home office from about 8 AM to 8 PM on a normal day. My brother leaves for work at 3:30 PM and gets home about 10 PM.
Things are better now than they were, but they are still not good. I think the key here is for me to realize they will probably never be "good" ever again. Or maybe I need to redefine what "good" means in this new reality.
Mom did spend some time in the hospital and then rehab for a UTI. I knew she was behaving/talking strangely. I finally convinced my brother to take her to the emergency room. UTI. Again. That seems to be a normal state for her. Her follow up appointment with her doctor is coming up, and I'm going to ask what we can do about the constant UTIs.
I try hard not to be "judgey" when it comes to my brother, as he is the one living with her and who has full-time caregiver responsibility for her. That is something I couldn't do for many reasons. That said, with his odd work schedule and the fact that he sleeps a lot and doesn't cook a lot of meals, there are things he isn't doing like I feel he should. Easy for me to say, since I am next door and not in the thick of things 24/7, right?
Mom has been fairly easy to get along with lately. I love Christmas, and take over plates of cookies and treats, which she loves. I haven't been with my mom on Christmas for nearly 35 years, so this year is a big deal to me. During those years, her partner wouldn't put up a tree, buy gifts or even open gifts that she got him. He also wouldn't cook a special holiday meal. It was just another day. She used to complain ALL THE TIME about this, and how much she missed Christmas.
I told her one day that we were putting up our tree, and told her that she might like one of the new pre-lit ones. And as she now has two kittens, I told her about the super pretty unbreakable ornaments that are available. At first she was onboard. Then she changed her mind. Back and forth for days. But last Saturday she and my brother went out shopping and she got her tree. She seems to like it.
Our biggest issue right now is that even though mom knows she isn't supposed to do it, she will sneak upstairs and downstairs using the stair lift. We have told her repeatedly that someone needs to be there for safety's sake when she's using it. Last weekend, I was over there for my brother's birthday. He and I stepped outside for five minutes or less. When we came back inside, she had seized the opportunity to go upstairs alone.
I get so angry when she does this. All the effort we put in to make her safe... All the worry this defiance causes us... The risk she is taking when she does it. I had a talk with her the next day after I had simmered down a bit. I told her that I have no idea if she does that to exert her independence or if she does it because she can't remember she's not supposed to, but that either way, it's unacceptable.
I let her know that we will do everything we can to keep her from doing it, but if we fail, then we will either have to A) hire someone to sit with her when my brother and I can't be there or B) she will have to live somewhere that they will watch her constantly. I said, "I don't believe you want either of those things, so I hope that between the three of us, we can work this out."
Of course she promised NEVER to do it again, which is a load of baloney because she promises that ALL the time.
We think we have figured out a way to make the stairway out of bounds for her by re-installing a door that the prior owner had removed, and adding a tall locking gate from the end post of the railing to the opposite wall. If that doesn't work, I have no idea what we will do other than carry out one of the options I told her about.
That aside, I am doing all I can to make this a good Christmas. I work a lot of hours. I never go on vacations or to movies or really do much for fun (mainly due to my own health). There are three things I really look forward to every year: A festival that takes place in my neighborhood every June, my birthday, and Christmas. The first two of these were ruined this year. Christmas is all I have left. I hope it is peaceful and pleasant.
So very sorry for you to have that on your mind. Please get counseling for yourself. I apologize for not being able to read the entire thread, but your heart was in the right place. Good luck, tinkster.
You can keep your promises to mom, because no nursing home will take her. At best she will be allowed to live in a supervised board and care for the mentally ill.
But she is so sweet with others. I don't think anyone has any idea unless I tell them, which I don't.
If your mother is like mine, you may find that you have to avoid being around her. I don't feel fear and not a lot of obligation anymore. The main thing I feel when she gets bad is anger and frustration. Normally I handle it pretty well. But I know I shouldn't have to live like this. The only thing that keeps me here is she won't leave this house and I can't make her. So I live a life separate from her inside the same house. (She can't be alone for long periods of time.)
Pardon the running on of words here. I've been working through the things myself. Last night, as I mentioned earlier in the thread, was an angry night and I decided I was not going to allow my mother to occupy such a large place in my head. I deserve better than that.
This morning my mother apologized to me for her behavior last night, but it didn't mean anything. I knew that she will do the same thing again. I can't change her, but I can minimize her in my mind. Her words don't have to have any importance, since they are from a distorted sense of herself.
A consultant or online helps can assist you for the handicapped design. You will do fine, I am sure. And, isn't it somehow new and exciting to move the family close and share caregiving?
Other than the MS, my mom is in good health: No heart problems, no diabetes, no high blood pressure. Nothing. Of course, having MS over 50 years takes its toll. She can BARELY use a walker, on good days. She has incontinence issues. And it's either the MS cognitive issues or some sort of dementia that kicks in sever times a week, making her venomous.
I mention her relatively good health because the running joke is that she is going to outlive all of us. I'm starting to believe that's true.
Mom has been to a planning attorney, plus she has an investment advisor. These things were all set up via the guiding hand of her now-deceased partner.
Just to clarify, mom has not yet moved in next door. We are still getting the place ready for her. It's our hope that this will be BETTER, in that we will be able to work together as a team so that no one person has to carry the load by themselves.
Mom was in one of her moods yesterday. I made the mistake of asking her what she had for breakfast. It got ugly fast. I explained to her that she needs to eat (she weighs about 98 pounds, which is up from the 84 pounds that she was on June 10th when she came here from her home up north). She yelled and screamed at me saying that it's none of my business what she eats or doesn't eat. She also won't drink enough water to stay hydrated, which causes its own set of problems.
She then started saying, as she often does, that "Joe told me you would do this. You're just trying to find an excuse to lock me away." when ALL I have done is push for mom to have a fair chance at home care. I've been her one champion through all of this (relative to keeping her out of a nursing home), yet I'm constantly being accused of wanting her to go to one. Then she started talking about moving back to the town out of state where she lived the past 30 years because she has "friends" there who will take care of her.
Well, when she said that to me yesterday, something in me snapped. I calmly told her that at this point, because of the care she needs, she has two options. She can either work WITH us and make the home care situation work, or she can fight us and make it impossible, which would mean others would be her caretakers, probably in an extended care facility. I said that my brother and I are doing all we can, but that she has to help us by eating, drinking water, not partaking in senseless, risky activities and keeping her word. Her response was "Don't you threaten me." My response was that it's not a threat, it's simply the way it is, and that I hate seeing her sabotage herself this way.
Frankly, I really don't think she has any idea what she's doing most of the time. To me, it seems that she lives second to second. Her short term memory is nonexistent. Because of that, I end up feeling bad for everything because it's not like she's doing it on purpose.
Or, as my brother said, is she?
I didn't mean for this post to be so long, but I just want to throw out there that my mom has always been an "odd" mother. She would say hateful things to me if I dressed up for a school dance. She also lies so easily that it's frightening. She always takes the path of least resistance, telling anyone and everyone what she figures they want to hear, which most of the time bears no resemblance to the truth. When I try to explain this to medical staff or doctors (i.e. "She will NOT tell you how she is really feeling" or "She will NOT tell you the truth if you ask her if she falls, has numbness, has any pain, etc.") I'm not sure they believe me.
This whole thing is crazymaking. As I told my significant other last night, my mom is a big part of my life, but she is NOT the center of my life.
Look up the thread on AC about emotional blackmail. It explains why it is so powerful, why some are totally defeated by it and how it can be overcome.
That would be Tinkster.
And now that she's gone? All those decisions? I second-guess about half and know I could have done better. It makes me sad. Or guess I should say sadder. My brain knows better. My heart? Well . . .
Some of her needs, for care and help, are real. But others have no material reality, the obvious example being this commitment from you, then a child, that you would never "put" her into long term care. As though her old age were not something she could plan for and take control of. This was not a reasonable statement of her wishes, this was her handing over her own responsibility for her own life and hanging it round your neck.
Your mother sounds like a "waif" according to Christine Ann Lawson's extremely helpful and practical guide to borderline personality types; and from your description of her one of the clearest-cut ones I've heard of so far (you bump into quite a few on this forum!). Her book 'Understanding the Borderline Mother' explains, inter alia, "how to love the waif without rescuing her" and I cannot recommend it highly enough.
I am not saying "don't look after your mother", of course not. But be clear eyed about it. Because otherwise all of your work will do nothing to relieve your sense of obligation and guilt, and it will meanwhile be increasingly difficult for you to give your own and your family's needs their fair share of attention. Best of luck, please keep posting.
I told my brother tonight that it's almost like she has given up, wants to crash and burn and doesn't care who she takes with her.
The house next door was bought with a small portion of the proceeds from the sale of her other house. I would think that we would have to do with it whatever she wanted at this point.
And yeah... emotional blackmail is the perfect term for it. I think that all my work on her behalf right now is so that I can, at some point, feel I did everything I could so that I can move forward without guilt.
Get therapy to become free from the grooming from your mom's emotional blackmail of you from childhood.
Forget about the promise you made to mom. Sounds like mom did little or nothing to help you help her. All.Bets.Off. If you can't get past feeling guilty, get counseling.
My mom's partner was not a nice man, and he was not kind to her. They moved six hours away from family/friends 30 years or so ago. Every week since then has been peppered with two or three calls a week from my mom, crying and saying how mean he was, that she "wished he would die" and that she wanted to leave. Of course, she never WOULD leave. It took me years to realize that.
My father was abusive to my mom and to me. I won't get into all that, but suffice to say that I think my mom came to expect that kind of treatment, and even (on some level) believed she deserved it.
I do understand that even an abusive, mean loved one is grieved when they are gone. I truly believe that in some strange way, they gave each other something to live for.
As I mentioned, my mom has had MS for 50+ years. I will be 59 this November, and she was diagnosed when I was 7. She has used scooters, walkers and wheelchairs since I was a little girl.
The house has a nice open floorplan, for the most part. We are getting three straight runs of stair lifts to get her upstairs and from the main floor to driveway level.
I've had over 40 texts from my brother today. Mom won't stop unpacking boxes that he has already packed for moving. She's like a hummingbird, always on the move, even though there is no need for her to do those things. Plus -- and this is the big thing -- she does everything in a risky way, even though she knows from PT and OT how she should do things to keep from falling.
I realize that cognitive issues are a part of MS, but I have to wonder if we're not also seeing Alzheimer's or dementia. One night, my brother was awakened by the sound of breaking glass. My mom was on her hands and knees cleaning the bathroom floor wearing only a Depends, and she had dropped a lightbulb.
That is great you were able to purchase the home next door, and that your brother will live there, along with your/his Mom. Good to get the house MS friendly before she moves in. Depending on your Mom's mobility, I wonder if she will need use of a wheelchair down the road? If yes, widening the doorways might be a good thing to do now while the home is empty.
Hope this will be a win-win situation for everyone :)
The "Independent Living" place where she's staying has an "age-in-place" setup, where services are available to her as needed, which makes it more of an assisted living setup. The problem is that my mom needs more hands-on than that.
She promises to stop cleaning and fussing with things, promises not to take risks (i.e. bending waaaaay over to pick up a piece of lint from the floor, etc.), promises not to do a number of things that would put her in danger, but she goes right ahead and does them anyway.
For now, my brother is with my mom all the time unless he runs out for errands, etc. He will go back to work (part-time job from 4 PM to 11 PM) after they are settled in the house next door, and I will take over for him then or when he has other things to do.
I've been reading everything I find on how to cope with mean behavior and non-compliance, but it's still hard to keep a stiff upper lip and not give up. We both (brother and I) find ourselves feeling hurt and angry several times a week. It's just so hard.
I'm hoping that by pulling our little family together we will be able to all do more, and do it more easily.
It sounds like at the moment you need to pull back and take care of your own health and relationship. I hope there is nothing really wrong, but just your body telling you that it needs some personal attention and relief from the stress.
Last night I thought about how important our loved ones become to us and if they really merit such a huge place in our thoughts. I wonder if, when it is our parents, we worry that we will do something wrong. We worry that they won't be happy. Maybe we don't need to worry and fret like we do, because they are only people. It sounds like you've worked hard on her accommodations, so they should be fine. You really can't get a handle on her health situation. You can just take her to a good doctor and give them her insurance card. It's nice to be able to share the burden with professionals.
I'm not being flippant here, just saying it is okay to let up on yourself. :)