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I do make arrangements for when I am out of town for another family member to be notified if something happens. Now that she's on Hospice, it's expected that there will no longer be ER visits, but, we could get word that the time is near or that she has passed away. We've made arrangements for when that happens too, so, I now feel more resolved about things. There is still a certain amount of stress and I'm not sure if that will ever change.
I've been chronicling our memory care transition on my blog: https://www.stumpedtowndementia.com/
If you have the time or inclination to read a post or two you might recognize your own reflection in our journey. I certainly recognize mine in yours.
She should be getting in-home help, but she refuses. And I refuse to do the things for her that she could hire out. (Folding sheets, putting them on her bed, cooking meals for her, etc.) She did hire a cleaning service, but they've just gone to once/month (their suggestion). So now she only gets her sheets changed once per month, I guess.
So why don't I go over and help her? Because she micromanages and obsessively controls every movement I make. I can't stand it. And the more you give these elders, the more they expect. I'm already her driver, and she is not happy that I've set firm boundaries on that.
She expected me to do a lot more than I am doing. And I resent that. We don't have a good relationship, and I do as little for her and am around her as little as possible. She doesn't think my time is worth anything, so why waste any of it on her?
I've told my brothers that the future scenario for her might be fall, then hospitalization, then rehab, then a facility. I will not be involved. And I'm not doing any after-care for her. Did that once; it won't happen again (my brothers can take care of that, even though they are out of state).
Many people are horrified at my attitude. But then they didn't suffer the emotional abuse that I did from my mother while growing up.
What we don't see is that the first mom is faking it; she's scared that her baby is going to fail, or get hurt, or cry, and she won't be there. But she does not let anyone see that and she sets this boundary with herself and her baby. He must go to school. If she is upset, she will pull into a parking lot and cry for a minute, but that's it. Time to suck it up buttercup, and let the boy be independent and have his own life.
Your mom's brain is broken, and she is that child. She can handle being left with caregivers 24/7. She may cry and whine and hurt herself, but with medication, she will lose her anxiety and learn to enjoy her new school. It is tough to be the mom with limits, but we are now our parents' parents, and it is our job to do what is best for them, not what they want us to do. They have taught us to respect their wishes, but when those wishes are not good for either of us, then we must be strong and keep good boundaries. There's even a book called Boundaries by Townsend and Cloud that can help you learn how to do this. It would be good for your whole family.
Be the strong mom, cry in the parking lot if you need to, but give mom what she needs, not what she wants. Visiting once a week is fine! ((Hugs))
In her final year my mother had pretty severe dementia. Sometimes mom knew who I was but that was less and less as time progressed. Mom was also completely bowel and bladder incontinent. As well, mom was wheelchair bound, could do nothing to assist in her bathing and grooming, at times she could minimally assist with her dressing and finally her dementia was robbing her of her ability to remember how to eat.
Next -
My son “Rainman” lives at home. He was 23 years old then. Rainman has severe autism and a bit of cerebral palsy. He functions at about a two year old level - with some added complications due to the autism. Rainman is completely non-verbal, wears Depends - although if you can get him to the toilet in time he’ll use it - but only with total assist. That means undoing his pants, pulling them down, helping him to sit - then the reverse when he’s finish - after of course, you do the wiping and cleaning, plus you had to stand there the whole time to make sure he hasn’t thrown a wash cloth into the toilet - or worse - his hands. Rainman hasn’t a clue as to how to shower himself but will stand there while I scrub away. He can minimally assist with dressing - which means he’ll put his arms up for a shirt or step into pants. When it comes to eating - Rainman can use a fork - only a fork - so I have to cut all his food. Add in that Rainman “pockets” food which means if your not watching he’ll stuff as much food into his mouth as possible. I haven’t had to Heimlich him in several years but it will always be an issue. Finally there are the fun little ticks that Rainmans autism brings.
Finally - it’s just me and my hubby. I’m a “stay at home mom” to care for our son. I had to quit a job I loved several years ago as I couldn’t find an after-school setting for him. Anyhoo- hubby works long shifts. We live in a home I love - we brought it about a year before my parents started to have “age-related decline”. The house is on the small side - two bedrooms on the main floor but a “bonus” room in the basement with a small 1/2 bath.
Ive had three (failed) back surgeries and am needing a forth. Back during my mother’s final year I had to have a radical hysterectomy. I knew I needed it - had been putting it off to look after my parents, but it hit a crisis point. Btw - daddy passed three years prior to my moms last year.
Okay - so now dear Janlin, I had to place my mother in a nursing home her final year. Mom had been AL with a part-time private caregiver- as long as mom didn’t out-live her funds. But even with the added care the AL asked mom to leave saying her needs were to great. So - the NH was a newer place on the small side - privately owned and the owners had their own mother there. It was definitely on the posh side and mom had her own room with her own furniture. I visited mom twice a week.
Janlin - what should I have done?
With dementia, the brain is broken and their thoughts are not logical. A memory care will help you out in that they are well trained on how to deal with broken brains and get them to do what needs to be done. They are your eyes and ears 24/7, and they allow you to enjoy your visits with her instead of worrying constantly.
Here's how I dealt with the facility stress: We - mom, workers, me - are all part of the same community, and they are simply assisting you in caring for mom. Of course you would pay friends for their time that they spent taking care of her, and the workers are simply friends you have not made yet. It will be ok with a great attitude from you and the right meds from the doc! Having a therapist help you will be great too. Finally, the book, Being Mortal from Atul Gawande is great for all these end of life issues.
There is a very good book to read about this subject. Emotional Blackmail: When the People in Your Life Use Fear, Obligation, and Guilt to Manipulate You
by Susan Forward
If this continues to be an issue, please see a therapist and get on some anti-anxiety meds to help calm you down while you and the therapist talk things out about what is going on the inside.
There are 168 hours in a week - assuming 7 hours a night = 49 hours then there is 119 hours you are available which is over 70% of time - make a plan with the facility she is in about when to call between 11:00 pm & 7:00 am in order to cover emergencies & even have a separate ring tone for them -
Then get some well deserved rest once you have your ducks in order because when you do this then you will get some peace of mind knowing that you have done as much as humanly possible - nobody can do more & stop feeling that you should because that is counter productive & could lead your own health issues - good luck
I called my mother every day (sometimes more than once a day) for 5 years.
Rounded up that was 1,900 phone calls and the phone calls were never easy because my late mother spoke over me every time.
She lived in another state.
We tried to get her a different living situation than living alone.
None of them worked.
I had to leave my state and move to her state in with her.
The end of her life when she suffered a stroke at 94 years of age.
I still have no peace as I find myself constantly driving over there to deliver all the little things she wants, I am paying bills, faxing in bills to the insurance company, managing complicated finances that I am not used to. I never had that kind of money. I find myself waking up in the middle of the night thinking of annuities.
By the way mom was in a rehab nursing home prior to this when she was still living far away and she fell and broke her ankle. She told me they put restraints on her, but I don't know whether to believe her or not as she was quite out of it at the time from post-anethesia dementia.
I have got her in a decent place now, but there are still worries. Just because you put them in AL doesn't mean all the responsibilities are taken care of. I also am tied to my phone in case they call.
When my mom was in respite care for 5 days at the end of April, it was supposed to be relaxing for me (I was babysitting my 2-year-old granddaughter). It was anything but relaxing -- not because o my granddaughter, but because of Mom. I heard things from my brothers and sister as to what was going on at the nursing home. I would call to make sure the staff were doing what the they were supposed to be doing (they weren't). On my way home on day 4, I had a meltdown. I could not stop crying. Recently, the hospice nurse suggested doing another 5-day respite to help me out. I said, No thank you.
Right now, I am sitting in Mom's room (by myself) while she sleeps in her hospital bed, thinking that the end is not too far away for us... As upset as that makes me, I have to keep telling myself that she is not the person she used to be...
Peace to you.
Then the day came when I knew in my heart she needed to be moved to memory care. She started showing up for dinner without her pants on and the other ladies in AL were making fun of her and bullying her like a pack of wolves.
Now that she is in a small memory care unit, has friends that better understand her and has the one-on-one care she needs my constant worry is gone.
I think the anxiety stems from not knowing if they have the care they need and if you are making the right decisions for them. You can only do the best you can and find peace in your heart.
Situation: 84yo mother still lives at home, has Alz, sister and I visit her 4x a week, take her to eat/shop. She has germ phobias and dietary issues that make care by others more trouble than it's worth. A support group sister and I go to is telling us we need to get her into a place. We're wrestling with which level of care. Home aide? She won't let anyone in the house. Extremely security conscious. Memory care? How do you take a person who has lived in her house for 45 years almost as a shut-in except for an enabling sister who did EVERYTHING for Mom (another issue...) to a place where she knows no one and no thing? I woke up realizing if we placed her somewhere, we would be trading one set of problems for another - and paying dearly for it from her estate. It's her money - not ours and we are well aware of that - but what's left of her happiness would NOT improve by being elsewhere. We are convinced she would die of depression within a few months.
We'll still have bills to pay, visits to do, excursions to take, laundry to do, greeting cards to buy (guess my mother is not the only one with a "thing" for birthday cards!), phones that ring.
Without writing a book here, Mom is better where she is until the disease progresses to a point she is no longer aware of who we are. Safer, happier (though still miserable). Sister and I will have no peace until she is gone, unless and until we resign ourselves to this. I just emailed sister this morning that our best hope is for mom to succumb to something quick - heart attack or stroke. Do I feel like a dirtbag for thinking that? Yes, but it's the truth. Part of peace is accepting uncomfortable truths.
So I think for now sister and I have no choice but to take no action, and that is a conscious choice. Leave mom where she is until the next phase of this disease.
I wish us both moments of peace. We will not have continued peace until she is at rest. Until then, we just have to live with this horrid reality because running away isn't a good option. If it were, I'd be in Switzerland by now.
Good luck to you. To all of us.