Why does my own mom try to constantly convince me that her condition is entirely my fault?
I feel like a horrible son. I'm in my mid twenties and I'm caring for a seventy seven year old woman who is my Mother. I'm adopted. I lost my father when I was sixteen, and I had to walk him slowly to his grave while battling cancer. Fast forward to now, and my mother has been living with me in my home for a year now. In comparison to her health last year up to this point, it's two entirely different people and she's declined rather quickly. I take her to the doctors, hospital, specialist weekly. Constantly on the computer researching new diagnosis', reaching out to friends who work in the medical field for advice on how to help treatment. My mother is the type of person who does not feel that her condition, health, or doctors are an actual established thing. Instead, it's all an overreaction. She's a type 2 diabetic currently in stage 3 kidney failure, severe nerve damage to the legs due to diabetic complications, extreme vision deterioration due to mismanaged diabetes. When she first moved in her blood levels were anywhere from 300-550 consistently and had an A1C of 7.9, currently it's 6.2. I have taken over all insulin injections, blood sugar testing, medication schedule, limited diet with a closely monitored carbohydrate intake. According to the nephrologist, we've managed to stop any further decline of her kidney function. Now she is getting to a point where her mobility is rapidly decreasing. From the moment I get out of bed I check on her, help her to the bathroom, get her changed into fresh clothes, get her water to drink, food to eat. I didn't envision feeling as though I am 50 years old while being in my 20's. I wouldn't give it much thought if it wasn't a constant battle to make her understand that her health problems are in fact a real thing, and have to be addressed. I managed to obtain an exercise stationary bike which I have set up in her second room. She will do anything not to get on it, and tells me exercise won't help her with her mobility, how do I know this is good for her bones? Did the doctor okay this? Sleeping in bed for 12 hours, and sitting in a recliner for 9 hours can't contribute to her increased weakness and muscle loss. I try to do my very best, have extended myself so much to where I've completely drained all of my savings and stock investments, all to constantly be made to feel as though I am only hurting her, and the best way to make her better, is to allow her to continue on in the same patterns she has done for all of her life. I hear people in the hospital, doctors office, out in public constantly praise me on how wonderful I am, and how lucky she is to have me...and to be blatantly honest, it feels as though those things aren't true, because if what I was doing was in fact admirable, why does my own mom try to constantly convince me that her condition is entirely my fault, and fight me every step of the way when trying to help her? There are days when I say I have to go to the bathroom just so I can have a few safe minutes to sob for a little while. I don't know how much longer I can keep going, but I won't give up on her.
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She does have little rewards in foods she likes, but if I don't monitor it closely, she would sit and eat an entire can of Pringles, or bag Chex Mix, or package Fancy Cakes, or Jack Links Beef Sticks, and not get why her sodium is out of hand, or glucose levels are high. So she does have little indulgences, but not daily.
What I expect from her is to be at which other people in her similar age be able to do, there are in fact many people at her age who are still working, who walk mile(s) a day, capable of being socially interactive. In fact the neighbors right next to us are a year younger, and they still drive and have an RV and go on vacations, they're physically active. I understand that not every elderly person is alike and exactly the same, but I am not going to simply say she can't be any better either.
My trying to get her to attempt to live again is not being unreasonable. She will sit and mope and say it's my fault she is depressed due to not being physically able to go and do things, but can't seem to comprehend why that has become. Fortunately I have been able to have the doctor recommend a home health care company who will come in and work with her, so hopefully she will work easier with them than with me.
I'm certainly not trying to turn a 77 year old woman into a 32 year old again, but by my mere attempt at improving her quality of life by making her more physically active, which was what her primary doctor advised, is to simply bring her to a point where she can have more control over her life. I don't exactly enjoy having to make every single decision, and handle every crisis and problem from the moment I wake up to the moment I finally sleep. It would be a blessing if she was rehabilitated to a point in which she was prior to her fall.
And in regard to the home thing, no it isn't worth breaking myself at all, you're right. But at the same time, I already have my hands full with one problem, I'm certainly not interested in bringing on a brigade of relentless disgruntled family members accusing me of swindling my mother out of money for my own greed.
I've heard of many family members who become the one who take care of everything, and when BIG decisions such as selling property, portfolios, interests etc. come into play, suddenly they've been accused of trying to get their hands on money, or trying to get their loved one deemed as incompetent, and I don't have the fight in me at this point to start any battles.
It isn't.
That why it exists.
The fact that your mother and her family "prefers" to maintain her assets is not a reason for you to impoverish yourself, is it?
You've thrown out everything she likes eating and have bought her an exercise bike.
So, let's say just for a moment that she magically turns into the world's best-ever patient and starts doing every one of the good things you're organising for her. Her health will improve, true; and her fitness and mobility should improve as long as she doesn't strain something and render herself unable to do anything much for two or three months. And then? Be clear about what you're hoping she'll achieve.
Moderation in all things. And bear in mind how discouragingly painful exercise can be for people who aren't used to it. What about swimming, does she like swimming? Ball room dancing? Is there a special class for elders locally, or something like that? It needs to be fun and it needs not to hurt, or you'll never get her started.
Admittedly, even if I were to sell her home against her wishes it would not be anything of a sustainable amount for her care. It's worth $35K roughly and that's assuming I can get it sold at top of market value. From the nearby nursing homes which I've reached out to, that potential $35K would only last her 3 months, 4 if lucky before having to be put onto public assistance.
In regards to her diabetes management, when she first came to me everything was mayhem. She would wake up at 5:00PM and take her morning pills, just to turn around an hour later and take her evening pills on top of that. She would not use her insulin routinely. Only when her sugar levels were 400+, would she inject herself. I put an end to the unpredictability. She takes her pills every day at the same time, no exceptions. She also has her daily injections of insulin at the same time as well, no lapses.
From there I took out anything in her diet which was high in sodium, cholesterol, and potassium (due to kidney failure, potassium is a no-no for renal failure), and nothing high in carbs if not carbs derived from fiber since carbs from fiber are not broken down into sugar, and doesn't affect glucose levels.
When she first moved in with me, she was under the impression that the only thing she had to worry about was actual raw sugar, she did not know what a carbohydrate was. When her sugar was low, she would get a cup of orange juice, and pour about 1/3 cup of raw granulated sugar into the orange juice as well, and then commence chug it. Only then to wait about 4 minutes to check it again, see her levels went up only a few points, and begin drinking more orange juice with sugar in it.
So she would go from 60 to 450 in an hour, and not understand the huge swing in numbers.
I weigh everything she eats, and limit carbs as much as possible. I am a food Nazi, and she actually knows what an A1C number represents, and what a carbohydrate is.
She has come a long way, which is why it is so frustrating to think now we are at another hurdle, that hurdle being physical activity, and now she wants to dig her heels into the ground, and say "I can't."
She is blaming you for things that you can't control--and time to let that go. I am so glad your partner is supportive! Bless him, this can't be easy to watch and be a part of.
It IS hard to detach from our parents, but sometimes, for the sake of our own well being, we have to.
I can only wish you luck in this. I wish I could get my hubby to monitor his Type 2 diabetes--!! What was your secret?? (Hide all the carbs??)
Earlier this year, it was looking like the only affordable option was to take her into my home on the opposite end of the state. I was looking into becoming her care-taker and possibly thinking if I could still keep my job.
But after the guidance of the people in this community, her doctor, and talking with some of my relatives, I knew that her condition was going to be far harder for me to handle. Not to mention not safe for her or for my own health.
So, I dug in my heels, told her she had to get better care than I could provide and got her on Medi-Cal (Medicaid) and into a skilled nursing facility. (I was able to get it all done w/in 4 months with an elder law firm --POA, Medi-Cal, Trusts, etc. It was expensive but worth it.) I feel guilt and sadness everyday because it's not what she imagined for her twilight years. But at the same time, I couldn't live with giving up my career and straining my marriage and worrying if living at home with me would be too dangerous for her.
It's time to ask yourself if enough is enough. Going to a SNF is not giving up on her. She'll have immediate care 24/7 and you'll have peace of mind and the opportunity to live your life. Thinking of you.
Your success with managing Mom's blood sugars is astounding. (Want to come help with mine?)
I have a number of questions intended to provoke some thinking, perhaps in a new way. If the list sounds like criticism that is the failure of my communication ... not my intent!
1) Has your mother ever had a diagnosis of any kind of mental health issues? Thinking back over the years, do you think that may have been/be a part of her overall health? That would help explain how your own mother fails to recognize the amazing help you have provided, wouldn't it?
2) Your mother has financial assets. Why are they not being used for her care? That is, why have you gone through your own savings and investments? I'll take a guess -- you can't convince her to spend her money on her health. Is that right? This would make more sense if your mother was indigent and you were wealthy. But how can you justify the current situation? Do you think your mother is deliberately exploiting you? How are you going to pay for your own care as you age? Why do your mother's needs (as you perceive them) come ahead of yours?
3) With the health problems you list for your mother, she is going to need more and more care to remain functional. This may become beyond what you can do, and it will be expensive. You've spent a lot of time researching her symptoms and treatments, etc. Might it be time to switch over to researching the financial aspects of her care? Using her money, consult an Elder Law attorney. (That specialty is critical.) Don't guess about if/how she would be able to get Medicaid help. Consult a professional. Also find reliable internet sources on this topic. And do get in touch with your Area Agency for Aging and explore options with their help. But it sounds like you are good at research. Do you agree that Mom's finances are a big topic to look into?
4) You would like your mother to live longer and more free from pain and distress than she probably could manage on her own. That is understandable. Most of us want that for our parents. What does your mother want? She is 77 years old. When can she make her own decisions and have them respected? Why doesn't she get to decide whether to sleep 12 hours or 8? She claims she doesn't want your help and you are only making things worse. You say you won't give up on her, but are you sure that is any different than disrespecting her own wishes?
5) Honestly, what is her quality of life right now? What is a bigger detriment to that quality of life -- her vision problems or fighting every single day with her son? Your mother is very unlikely to reach 100 or even 90. Will she be better off -- will you be better off -- spending her last years in peace and harmony with her son who truly loves her, or following his plan to extend her life several months or a few years, against her will?
You have been doing everything in your power to take good care of your mother. That is wonderful. But her health is not entirely within your power to control. You cannot blame yourself for that.
You really need to talk to an eldercare attorney who understands Medicaid to ascertain exactly what path you need to take.
She had taken a fall about two weeks now, and since then everything has started to evolve much quicker. The doctor's assessed it as a bruised hip, not broken/fractured. Prior to the fall she was mobile, able to walk from her bedroom to her second room, able to get up from the toilet, capable of walking into her kitchenette area to get her a drink. But all of that has stopped as of now.
I am very blessed to have a wonderful partner who is extremely supportive and in fact works in a nursing home however, from his knowledge and inquiry within the company we would never be able to afford permanent placement. Medicare will only cover up to 20 days, thereafter we would have to pay $350 per day after that, which would run up to thousands of dollars a month. Considering she does have assets to her name, she would be unable to receive Medicaid unless they were not owned by her, but upon further investigation it turns out Medicaid will reject anyone applying for benefits if they've signed over property/assets within the last 10 years.
Fortunately she is not on dialysis yet, according to nephrologist she has a bit more of kidney function decline before she will be needing dialysis, I believe he said 12% kidney function, then dialysis (I may be off of the exact percentage he had told me, but he did say she's not there yet)
She's had multiple heart failures, carotid artery disease, coronary artery disease, polyneuropathy, retinopathy, hyperparathyroidism and the list goes on from there. I'm certainly not naive to the harsh fact that her health is going to decline no matter what, and with further decline in health it will require a significant amount of outside help, I'm just worried financially it won't be possible to have her in a place where she can have round the clock care.
How amazing that a young man is taking such fabulous care of his mom. She sounds difficult (to say the least) BUT she's killing you. You most assuredly are NOT a terrible son. You've done far more than most sons would.
IMHO, it's time for mom to be placed in a NH or ALF. She could easily live another 10 years with your amazing care, and then where will you be? Mid 30's, no money at all, career put on hold for mom....and how's the personal life? Probably non-existent.
Mom can sleep 12 hours in an NH and then sit for 9 hours also. You CANNOT make her exercise or do anything, and that frustration will kill you, or just drive you crazy, don't know which is worse!
Is it possible to look at some facilities? Mom isn't going to be on board, plan on that, but she's barely got a life now and seems to not care.
It's a tough call, but what else can you do? Your pain is so evident and so raw, my heart aches for you.
Start looking for facilities that are affordable. They may not be the Ritz, but your mom sounds like she really IS indifferent to everything. Just make sure the place is clean and well run.
What's her DX? Dementia? Alz? 77 isn't very "old" these days.
Bless your heart. You sound like a sweetheart. Come back--you'll get better answers than mine.
Oh, and YOU are most certainly NOT to blame for her condition, except that you've brought her back from the dead, pretty much.