I don’t need validation for my decision. For once, I thought the alternatives through and made an informed choice.
I’m posting this for the benefit of people who might be facing the same choice and might be helped by following my logic.
Up until now, Mom has lived on her own next door to me, and I took care of her.
Back in the late 1990s, Mom was diagnosed with Sjogren’s Syndrome, an autoimmune disease, which was causing her dry eyes and dry mouth. It can also cause fuzzy thinking, difficulty swallowing, and lymphoma.
Long story short, all those things happened, plus a stroke. The difficulty swallowing led to her inhaling food and pills instead of swallowing them, and operations to remove stuff from her lungs. She elected to have a feeding tube inserted. She hasn’t had anything by mouth since 2012.
The last time she was in the hospital, I took over her accounts. Fuzzy thinking got her where she lives — she, who was head of the accounting office for Corning Glass Works’ Ceramic Products Division.
She’s gotten too shaky to do her own feeding and give herself her medicines.
Her doctor has put her on oxygen 24/7 and nebulizer treatments twice a day. Her doctor has also diagnosed her with mild and worsening dementia.
If anything happened to me, from a bad cold to sudden death, nobody else could take care of her. I found that out, the last time I left her with relatives at her own home for a weekend. Two very smart people couldn’t do it all. So if anything happened to me, she would have to go into a facility then, which would be disruptive for someone with dementia.
She’s pushing a feeding pole around the house, while navigating through coils of oxygen tubing. So far, so good, but a fall could be disastrous. She has a LifeAlert button, but I’m not confident she would remember to push it; if she was unconscious, she couldn’t push it.
If she stayed in her own home, she would have to have someone there all the time; that’s three 8-hour someones who could administer feedings and medicine and could tell whether her nausea and pain are serious or are a physical reaction to not wanting to take a shower or go to the doctor. If she was seriously ill, there would be the difficulty of getting her to the ER or the doctor and all the fuss and upset to her of that process.
She could live at my house, but she still would be unhappy not to be in her own home and still wouldn’t have a professional on site to assess her health. If she fell or needed professional attention, we would still have to get her from here to there. Not easy, if we’re iced in back here in the woods.
A few years ago, an ice storm took out our electricity for nine days. It was several days before we could get to the road. Oxygen pump? Feeding pump? Both take electricity.
She doesn’t agree, but I decided it was time for her to have professional care and constant oversight in an environment that will always be stable, safe, and electrified.
When this all began, she bought herself a long-term care policy, which is now paying off. She’s under long-term hospice care, too, and they’ll help me make sure all is well with her in between my frequent visits.
If you’d like to send her a card, let me know.
I’m posting today at Fatal Foodies about Fruit Salad With Bear-Whippin’ Sauce.
A WRITING PROMPT BASED ON MY POST: A character makes a difficult decision that is not well-taken.
MA
Dan Antion
December 5, 2017 at 9:09amThese are very hard decisions to have to make, but they have to be made. Fuzzy thinking and complex mobility (feeding pole, oxygen, etc.) are a dangerous combination. My mom suffered from falls because of those things and because she opted not to use her walker or disconnected her oxygen “for a short trip.”
You reach a point where you do know what’s best.
Marian Allen
December 5, 2017 at 3:28pmI’m sorry your mom had falls. It was only a matter of time before my mom had some. And that’s assuming she didn’t fall and then not tell me about it.
Roy A Ackerman, PhD, EA
December 5, 2017 at 1:56pmI have familiarity with the syndrome, since my ex- was provided that present from G0d, too!
The decision you made is a tough one – and more and more of us are going to have to face up to that, as well. (One hopes that the facility has backup generators and not like the criminal enterprises that dot the Southern Florida highways…)
Marian Allen
December 5, 2017 at 3:32pmIf push comes to shove, the hospital is just across the road, and I KNOW IT has backup generators!
Morgan Mandel
December 5, 2017 at 2:04pmThere’s only so much you can do, and keeping her there could have led to tragedy.
Marian Allen
December 5, 2017 at 3:29pmIt sure could have. I was scared ALL THE TIME.
Ruby Deaton
December 5, 2017 at 5:40pmWell written. Most of us will face these choices in our lifetimes. The decisions are made with lengthy considerations for our loved one and our own physical and mental abilities to provide care. We must remember that love is at the heart of these choices. Change is difficult, but love remains. Your mother cherished you, Marian. She was proud of her bright, self-reliant daughter who could make intelligent decisions. Praying for you and your mother during this transition. Loved this photo of your mother.
Marian Allen
December 6, 2017 at 9:20amThank you, Ruby. Isn’t that a beautiful picture? My husband’s eldest sister gave me that; she and my mother knew each other. Charlie’s sister said it was taken when Mom was expecting with me.
Alana
December 6, 2017 at 6:36amI can only begin to imagine, from a good friend who faced a decision with her husband (strokes,multiple cancers) how difficult this must have been for you. No one has a right to second guess you or guilt you. Being a caregiver is so hard.
Marian Allen
December 6, 2017 at 9:23amThank you, Alana. So far, the only person who has given me grief about this choice is Mom. And the fact that she can’t understand why she needs constant care just makes it clearer that she does. She’s too precious for me to take chances with; I want her safe.
pete laberge
December 6, 2017 at 9:35pmI am very sorry to hear this. I recently had to put Noella, Dan and Boomer in old age homes. I was forced to do this. But it hurt like hella. Take care. LLAP.
Marian Allen
December 7, 2017 at 8:16amI was forced by Mom’s health to do this. It hurts, but, in her case, it’s what she needed. If you look at today’s (Thursday Doors, Harrison Springs) post, you’ll see that her advance planning has enabled her to go to a place very different than the “old age home” of the past. I hope Noella, Dan, and Boomer are in a nice place. LLAP, Pete.
Alicia Butcher Ehrhardt
December 11, 2017 at 9:50amI have been in Lalaland – brain refused to kick on for a while – so I’m just catching up.
I’m glad you found a lovely and safe place nearby – making the decision at the right time.
I can confirm that not doing so leads to consequences you wouldn’t want for your mom. My sweet MIL stayed at home, basically ignored – while it took huge amounts of time to do the minimum for my in-laws, FIL got unbelievably stressed out, SIL was a wreck… They had looked at CCRCs at one point, but never made the decision. It wasn’t pretty. Supposedly, she wanted to stay at home, but that’s not really possible. Her last days were a frantic hospital stay – no preplanning, again.
It has always frustrated me that I was in no position to help, and my SIL did her very best while also trying to let her mom and dad make their own choices. It is a hard thing to do.
You will be able to visit your mom – and just visit, not make up for all the carers who didn’t do everything. A friend who works in the industry once told me that most people figure out later they should have made the decision sooner; I think you mentioned that you might have missed the optimum timing for someone to get comfortable in a new setting, but I hope your mom can enjoy her new home.
Marian Allen
December 12, 2017 at 5:07pmShe has pneumonia right now, but it’s breaking up. I’m SO GLAD I got her in before the pneumonia set in. I feel like she’s been working up to it for a while. I’m spending a lot of time with her while she’s so ill. When she gets better, I’ll cut back and encourage her to take advantage of the social activities they have there.
Alicia Butcher Ehrhardt
December 12, 2017 at 5:53pmShe is so fortunate that you are close enough to spend lots of time with her. I think she’s already benefiting from you being able to just visit and coordinate her medical care, rather than being everything. So glad she is improving.
Stress doesn’t help anything, and people are stressed when chores don’t get done, etc., and all their time seems to go down a bottomless pit. I hope you have a lot of time for good visiting, and enjoying those activities, too – and breathing space for yourself. Please give your mom a hug from me.
Marian Allen
December 12, 2017 at 6:27pmWill do, Alicia! Thanks for the understanding and good wishes. When she gets through this pneumonia, I’ll WILL get some chores done. I’ve already begun cleaning my office, which looks like a landfill!
Jared
December 30, 2017 at 11:51amVery tough to deal with. My grandmother is starting to enter that stage where tough decisions have to be made. We as a family are having a hard time deciding what would be best for her. You’re article is very helpful though, thank you.
Marian Allen
December 30, 2017 at 12:05pmI’m sorry about your grandmother, Jared. Mom is in the right place. I wish you and your family the best in making your own decision.