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Horrible nutrition, spoiled and out of date foods, doctor visits ONLY when something became a crisis (i.e. pressure wound on foot wrapped up in duct tape instead of going to the doctor, etc.).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.
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.
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 :)
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. :)
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.
Get therapy to become free from the grooming from your mom's emotional blackmail of you from childhood.
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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