Falling Off the Alzheimer’s Cliff: The Decision to Move My Mom Into Assisted Living

by Nancy Wurtzel on December 4, 2012

Deep down, we knew it would happen, but we didn’t really have any other choice.  It was just not safe for my mother to continue to live in her senior apartment.  She needed more care, more activities, more everything.

My sister and I were exhausted and we’d reached that tipping point, where if you don’t take action, life could spiral out of control very quickly.

Even though we understood moving Mummy — as we affectionately call her — would take its toll, we knew it was the only decision that made sense.  After months of angst, we finally packed up her belongings and moved Mummy across town into an assisted living facility.

Now, for the first time in a very long time, my sister and I do not shoulder all the responsibility.

Mummy enjoys three meals a day in the cozy dining room with the 24 other residents.  The staff does her laundry once-a-week, checks on her during the night and does a light cleaning of her new abode, which is almost as spacious as her previous apartment.

We still pay her bills, do some light grocery shopping, clean her living space, take her to the doctor, get her out for lunch, take her for car rides in the country and handle countless personal care issues.  We also try to make sure one of us sees Mummy daily.  However, if necessary, we can both be gone for a handful of days, something we couldn’t have done before.  We no longer have that constant gnawing worry.  Mummy is safe.  The staff is competent, cheerful and,most importantly, kind.

Mummy has also benefited because her new home offers many activities — from musical performances to crafts and card games to bingo.

The downside — the very deep downside — is how Mummy was affected by relocating.

Within days, we started to see the toll of uprooting an almost 92-year-old woman with moderate dementia from familiar routine into uncharted waters.  She could barely stay afloat.

At first, we thought Mom might have had a stroke as her behavior changed significantly and her confusion seemed so much worse.  Her doctor says there probably was no stroke, but the trauma of moving had simply made her dementia much more pronounced.

And, her condition continues to slide downhill.

It is difficult to watch this decline, and hard not to feel guilty about the decision we made.  A decision that was right but not without its consequences.

Dementia always seems to exact a traumatic toll — no matter what you decide.

 

Be Sociable, Share!

{ 18 comments… read them below or add one }

Miriska September 19, 2013 at 11:21 am

I, too, am experiencing exhaustion and serious decline in my own health from caring for Mom . My elderly Mom suffers from both Vascular Dementia & Frontotemporal Dementia with psychotic tendencies … the worst combination! (Also, old traumatic brain injury, mini strokes / brain scars / seizures / brain shrinkage.)

I just moved her into the most desirable independent living apartment complex for the elderly, and I pray daily that she wont “mess up” her chance to stay here by “going off the deep end” in front of the other residents and management/staff! Moving really is a traumatic event to an elderly person with Dementia. it takes a while to “settle” into the environment.

With my Mom, many social situations create anxiety in her which has potential to result in “confusion and personality changes with aggression” that takes a couple of days or so to “come back down” to normal behavior. She has to have a “Stress-Free Life”, nothing upsetting or overwhelming. Illness, ailments, physical discomforts do make a difference in the mental status every day … and boy, does she have many health issues and complications … constantly going to doctor appointments! Plus, she is never satisfied with their exam/explanation, and insists on “another opinion”! I must say, how disappointed we have been at the health care places where the staff and physicians all don’t show her respect, don’t listen to her with kind empathy, don’t interact with her gentle enough, and don’t really do any diagnostic test to get to the bottom of her many complicated complaints. She does have legitimate concerns and complaints, but so many little things need “checked” that no body takes the time to solve the health mysteries that plague her continually! I have to try to sneak messages to the nurses to treat her kindly, overlooking the behavior because of the two kinds of Dementia and lack of understanding/logic/reasoning skills and please speak to her like a delicate child (to keep her calm and help her understand the explanations and instructions better)!

Meanwhile, I hold my breath that people living in the apartment complex won’t notice the disturbing changes and report her to management with suggestions to have her evicted. Mom’s bouts of mood swings and personality changes are humiliating (for her sake) I don’t want her to be known/remembered this way! This is not the Mother I grew up with! Her sweet gentle spirit has vanished! She has become aggressive, manic, sarcastic, and socially inappropriate! But the odd behavior comes in cycles or waves, seeming so “normal” at times, then suddenly it’s back!
She lacks ability to interact appropriately with neighbors, store clerks, and health care workers, speaking to people with outright insults!

Most people we encounter have no concept of such complex “Neurological” issues and can’t seem to understand …

On “bad days”, she has terrible lack of comprehension, no logic and/or reasoning skills concerning simple every-day activities to a point where even trips to the grocery store turn into a fighting match to make her understand common “explanations” of simple “LOGIC”!

I am worn down to a point of shattered nerves, trembling, crying, nausea, upset stomach, fatigue, sleep loss, and exhaustion both physically, mentally, emotionally, and spiritually. My immune system in in overdrive and I can’t remember my daily responsibilities or make important decisions without dread and nausea. I need help, but she won’t allow “home based services ” to enter her apartment. I can’t force her. She needs “assisted living or nursing home” but have no way to pay for it. What options are left in our case? I can’t afford ANY kind of facility with private pay. ALL nursing homes refuse to accept her because of her history of bouts of “psychosis” with disturbing over-active aggressive argumentative behavior that they can’t “control” because they indicate their conditions for staying require patients be quiet and docile.

Don’t know what to do. Don’t know how to survive this new way of life.

I have a strong sense of “FAMILY DUTY”, no matter how uncomfortable, no matter how much it hurts my own body and soul, no matter how inconvenient. My own conviction is, as adult children, it is our RESPONSIBILITY to take care of our parents in their time of need, regardless of how much it cramps our own life. So many adult children don’t want this kind of burden, and don’t have the patience or tenacity to take this role on. Selfishly, I could say, “this is ruining my own personal life” because my own home is going “down hill” for lack if energy or health to keep things up like before. Right now, personal “Quality of Life” is poor. My Mom consumes my energy and thoughts but is “helpless” and not capable of being left to fend for herself … As her only living relative, now living in a new strange city, separated from familiar friends and social connections … feeling loss and lost … I am all she has.

Yes, I need breaks from this heavy burden / responsibility! Mother needs a facility for Dementia / Alzheimer’s, but there is no money. Don’t know what can be done.

Reply

Judy February 4, 2013 at 9:51 pm

I had to move mom from an independent living apartment to assisted living a little over a year ago. She fought me tooth and nail, but she was not handling her finances right, over-taking her meds and starving herself. At Assisted living they gave her meds, 3 meals a day, cleaned her apt., did her laundry. It was wonderful, and after the first week she told me it was the right decision and she loved it.

Five months later though she suffered a fall against the headboard which led to numerous complications and the diagnosis of vascular dementia. Assistant living could no longer keep her as she wouldn”t walk up the hill to the dining room or use her walker. They said she needed a nursing home.

So in June we moved her to the best one in the area with a special hallway for dementia and alzheimers. Two weeks later she fell and broke her hip. It’s been a nightmare of rehabs, surgery, etc. She now has been back to the nursing home for about 5 months and just can’t seem to get use to it or realize it is her permanent home. She’ll call and say she can’t stay in this expensive place much longer. She needs to find an apartment. I keep assuring her that she can afford it and that it is her permanent home. It’s repetitious but I’ve learned how to calmly explain she has plenty of money and she’s where she needs to be.

I too write a blog momsdementia.com where I cover these visits, calls, and any research I find that might hellp or prevent this disease. Also I wrote her life history. I enjoy reading other blogs, as its a form of therapy. Keep up the good work.

Reply

sandra tyler January 14, 2013 at 6:34 pm

Very tough. My Dad wound up in a nursing home with dementia, though he just thought he was on a cruise ship:) My mom is 94 no dementia but struggling to retain her independence at home. It’s very stressful for her as well as me, but it is her choice. We take day by day by day by day…don’t feel guilty. It’s a very uncomfortable and difficult place to be, the child having to take care of their mom.

Reply

Margot January 10, 2013 at 3:45 pm

Ah—I am right were you are! We put it off for three years with the same results. Never forget that–no matter what anyone says, you ARE doing the very best for her. When you are calm, rested and alert you give her your very best–and isn’t that what you want for her? The hard thought is that this disease will take it’s toll, no matter how long you have tried to prolong the inevitable pieces. I agree with Piracetam—remember that your Mom would also want the best for you :)

Reply

Piracetam January 9, 2013 at 12:05 am

No, do not give up your life for them but don’t let anyone else do it either. My sisters wouldn’t give up their lives to even help me by taking every other weekend, I had to take care of them for years by myself. When my dad got senile, he started fights between each of us, got everyone hating me, and I was working myself to death. After 4 years of full time care, the only other person, our priest, who saw what was going on in that house, begged me to go home and let them find out themselves that they needed me, and it might stop the abuse. It didn’t. Dad totally cut me off, my sisters jumped in like vultures to get his will in their names, and his power of attorney, and they believed all of his stories about how terrible I was even though they knew that was not how I am. They took advantage of him and stole the last 2 years of my mom’s life by having her believe I was some horrible person not to be trusted. Don’t let anyone else take it on themselves, no matter how they may believe they can do it, and if they do, stayin constant communication with them so you know what’s going on the whole time every day. Not by what the parents say, your mother needs help. everyone has a life even if they’re unemployed, get home health care for her to get a much needed break, caregiving is a harder job than any full time or part time job like you’re talking about. You koow this by the little you’ve been through. Your mother has been doing it for much longer and is probably burning out, the fact is, when you’re burning out, you don’t know it, you thihk you’re doing the right thing, that you owe it to your mother. But to give your whole life to another person at the cost of your own is not a life. Put yourself in your mom’s shoes and the guilt that you are feeling, she is feeling 1000 times more.

Reply

carnosine eye drops January 4, 2013 at 6:57 pm

One sister, who has always had the least ability to understand or accept Mom’s contrariness, restlessness and just plain stubbornness, has the misfortune (or God given challenge) of taking care of my mother’s day to day needs. Catherine lives closest to Mom and has a flexible schedule without job or family constraints. She has taken on the task with gusto, as is her style, and has made it her full blown responsibility to do the best job possible. Mom, however, is rarely content.

Reply

Elaine Pereira December 11, 2012 at 3:03 pm

I totally empathize with your comments. I’ve SO been there only I walked it alone as my only sibling, my brother, had died in 2004. My new book tells mom’s incredible story.
Twitter: @ElaineColette
FB: http://www.facebook.com/ElainePereira.IWillNeverForget

I Will Never Forget-A Daughter’s Story of Her Mother’s Arduous and Humorous Journey Through Dementia

Reply

Ginger Kay December 11, 2012 at 2:50 pm

“A decision that was right but not without its consequences.”

This succinctly captures so many of the decisions we make throughout our lives. Doing what is right seldom feels as good as we wish it would. It’s wonderful that you and your sister are there to share the responsibility and are in agreement about the best care options for your mom. I hope she settles in soon.

Reply

Sharon Greenthal December 11, 2012 at 2:43 pm

Things just don’t get any easier, do they? Thank goodness you and your sister have each other to help through this process. How stressful for all of you – especially your mom.

Reply

Martha Stettinius December 10, 2012 at 10:03 pm

Nancy, I understand how you feel. I moved my mother from her home to mine, from my home to assisted living, then to a rehab center (when she fractured her pelvis), a “memory care” assisted living facility (where they specialized in dementia care), and a nursing home. Each move was necessary for medical reasons as she needed a higher and higher level of care, and each time it took weeks for her to adjust. I hope that your mother settles in, and that you can enjoy your time with her. (Oh, and I agree with Bob Demarco above about having your mom tested for a UTI…)
–author, “Inside the Dementia Epidemic: A Daughter’s Memoir”

Reply

Helene Bludman December 7, 2012 at 6:39 pm

So sorry for you and your sister, Nancy. What a painful time for you. Wishing you strength.

Reply

mindy December 5, 2012 at 10:52 pm

As difficult as it is uprooting your mom and placing her elsewhere, you need to keep telling yourself that it is the best thing for all of you. Caregiving exacts its toll on the caregiver. That is not something your mom would want. There is no easy way to deal with this situation, and you just have to go with your instincts. I still feel guilty about how things were handled with my mom, but we can only try our best.

Reply

Reticula December 5, 2012 at 2:11 pm

You did the right thing. I can say that as a mother. I would want my kids to do what you did, and I’m sure 10 years ago your mom would have said the same thing.

It’s still sad though, the adjustment. It’s still hard that you and your sister had to make the decision. And your mom would be proud of you that you took care of yourself and you took care of her, even if it was sad and hard.

Thank you for sharing your journey.

Reply

Leigh Lenzmeier December 5, 2012 at 7:43 am

Typical Booomer dilemma Nancy; caring for aging parent(s) with kids in college at the same time & sometimes moving back home after that. If you don’t do what you did, you cheat yourself by ruining your own life. I watched my older sister, a nurse by profession, do the “right” thing, caring for her elderly husband until the end. About two years later, the cost became obvious. She ruined herself, compromised her own quality of life. You did the right thing. Fondly remember, but move on.

Reply

Bob DeMarco December 5, 2012 at 6:57 am

It is clear to me that both you and your sister really care. Wonderful.

This is probably going to sound off the wall, but I would suggest you consider getting your mother’s urine cultured for an infection.

It can’t hurt and who knows it might help.

There were a few times when my mother Dotty seemed to be falling off a cliff. Each time she had a urinary tract infection (UTI).

God bless.

Bob

Reply

Susan sweet December 5, 2012 at 12:48 am

I remember well the day we moved Mama. Every word you write brings a memory back. Just know you are doing what is best for all of you. You are amazing .

Reply

Laurie MacNaughton December 4, 2012 at 5:51 pm

Nancy, I am not asking this with ANY adverse motive whatever, but rather because I am with a community bank in the Washington, DC area in senior finance – which, for all intents and purposes, means FHA reverse mortgage products.

Did you and your sister try the in-home care route? If you did, would you be willing to share your experiences? If you compared costs with residential care, how did the two options compare?

I spend all day, every day lining up financing for adult children of aging parents, and I very much appreciate receiving recent, first-hand input from family. Additionally, as the daughter of an aging and widowed mother, I know my day of decision-making cannot be far off.

Thank you,
Laurie MacNaughton
Middleburg Bank
[NMLS# 506562]

Reply

Nadine Feldman December 4, 2012 at 11:11 am

This is such a touching post. These decisions are so difficult and painful, and the caregivers are often exhausted and depleted. My heart goes out to you, your sister, and your mother. Hugs.

Reply

Leave a Comment

Previous post:

Next post: