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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Horrible nutrition, spoiled and out of date foods, doctor visits ONLY when something became a crisis (i.e. pressure wound on foot wrapped up in duct tape instead of going to the doctor, etc.).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.

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Know what I think? I think you should fix the house up next door and either rent it or sell it . . . and put mom into assisted living. You have sabotaged your life.

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.
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You mentioned that your Mom's partner of 25+ years had passed on a couple of months ago.... give your Mom time to grieve, some of those outburst could be from her missing him, depending on how their relationship had played out.

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 :)
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Oh, goodness. I would have gone for an assisted living community for her, but you have to start where you are now. It sounds like you have put a huge investment in setting her up next door. I don't know if that will increase the stress, because you are so available, or make it less. I'm glad your brother will be living with her. That will make it a bit easier. Is he working, also? Or will he be able to be there all day?

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. :)
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Tin later, let me assure you that no matter what you do, you will have guilt. I loved mom to bits and pieces. She was a wonderful mom and my biggest fan. She was far away from your mom. Always trying to help me to help her. Every single decision, bar none, was made with her best interests in mind.

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 . . .
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If you want to know what I think, here it goes: 1. Manipulation game--parents often drill it into their kids "don't you dare put me into a nursing home....." or variations of that, which really is a big guilt trip, and completely out of bounds for adults of any age to hold each other hostage, making one generation a slave to the other -- and I write this as a someone who takes "Honor thy father & mother. ...." commandment seriously! But that doesn't mean you must become a slave to your mom/dad. 2. The nursing homes that your mom envisions, are completely different from today's facilities. 3. Home caregivers for someone with MS (with suicidal tendencies) are needed virtually 24/7/365, and this costs more than a high level of assisted living. 4. I am VERY worried that you have not set up your mom's paperwork with a Medicaid planner, such as Gabriel Heist mentions in his excellent book. You are worried about the minutiae -- take a look at the Big Picture, if she lives 10 years with increasingly disabilities she will need $600,000 or more in assets. If not, she will need Medicaid to pay. IInstead of locking your own wounds, spend what little energy you have left to get mom in to an Elder Care lawyer who has experience with Medicaid planning. I don't think your plan to manage her care next door, however well-intentioned, is working now, and by your own admission, and so it is extremely unlikely to work in the coming months and years. Most of all mom gets to decide what her care will be--but that does NOT include making you her unpaid slave (or if paid, you can only provide a very limited number of hours and certain not on call!). Best wishes and CALL A LAWYER right away.
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Great answers Maggie and cmagnum. If only I'd known then what I know now.
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Tinkster, you do need to be able to move forward without guilt. And you deserve to. Unfortunately, your ability to do that is entirely unrelated to anything you do for your mother. You could be at her side 24/7 and sacrifice every other aspect of your own life, and still you will feel guilty about her unhappiness - unless and until you understand better the ways in which her needs drain you. To lose the guilt, you need a clearer picture.

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.
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Tinkster, you cannot reason with someone as irrational as your mom. Just take care of your self and your own spouse & kids. In my estimation it will be a total unmistakable disaster to live next door or downstairs (lost track of which it is... ) with someone as wacko as your mom. You love her but you don't need to LOSE YOUR SELF over her care. Please take care of your own self! Mom will pass away some day, what will YOU do then? Need to preserve something of YOU for that time. I lost my mom in June, we were considering having her live with us, and just about to call the home remodel person when she died. Now I am faced with cleaning out her home while I grieve her unexpected death, and there is a big empty spot in me, because I did so darn much with and for mom she became almost my other daughter. I think I went over the line or close to it......I beg you to reconsider any increase of what you're doing. Cut back!
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Next time she threatens to end her life, call 911 and tell them she is a danger to herself and someone will come pick her up, take her to the hospital psych ward and have her evaluated and observed, plus medicated with a treatment plan upon discharge.

Get therapy to become free from the grooming from your mom's emotional blackmail of you from childhood.
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The suicide threats are always sly... "Don't worry. Next time you have to call 911 it will be because I did it on purpose." I should mention that she has attempted suicide twice over the past 30 years, that I'm aware of. Once was an overdose of medication. The other was sitting in a running car in the garage.

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.
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