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Alzheimer's Disease - Preparing for Assisted Living

Loss of Conrol
Let’s face it – sooner or later Alzheimer's disease takes control and robs your loved one of their ability to live independently. We are forced to admit that no matter how strong we are or how much money we have, some things are just bigger than we are. One of those things is Alzheimer’s Disease. It is a disease that we may never fully understand. How could we? The person whose mind has erased all but partial memories can’t tell us how it feels. Science can explain the physiological changes but not the emotions. Science can’t give us the answers for all the questions we have.
We are never really prepared.
The recent changes in my Dad’s mental status have been alarming. His increasing outbursts of anger have left our family concerned for my Mom’s safety. It is not something our family knows much about. We are peaceful, loving people who express anger in words, not actions. That was then. This is now. We are not prepared for this journey but here we are – on the road to big changes.
A Change Is Going To Come
For anyone who has a loved one with Alzheimer’s Disease, there is a fear that one day you will have to place that loved one in an environment that can ensure their safety. The words ‘assisted-living’ don’t sound very threatening. We’ve used them many times in our family as we talked about the future with my Mom and Dad. What we did not say was ‘locked’. The thought of my Dad needing to be locked into a secure unit never crossed our minds. As I’ve said, we are a peaceful, loving family so how did we arrive here?
A visit with the geriatric psychiatrist this week pulled the proverbial rug out from under us. I quote – “It is time to place your Dad in an assisted-living facility and there are three in the area that have locked units.” The words still resonate in my mind – locked unit…locked unit…locked unit. This is my Dad we are talking about, not some criminal or wild animal. And this is the emotional me talking. The practical, rational me knows the psychiatrist is right but that doesn’t make it any easier to accept.
Preparing for Assisted-Living
The psychiatrist advised the following steps to begin the process.
- Contact the local Alzheimer’s Foundation office for guidance.
- Visit each assisted-living facility and talk to the staff.
- Prepare a financial statement including assets and debt.
- Choose the facility that ‘feels’ like the best fit.
That doesn’t seem too difficult and it makes perfect sense. It’s the next step that is impossible to wrap my brain around.
“There'll be two dates on your tombstone And all your friends will read 'em But all that's gonna matter is that little dash between 'em”. - Kevin Welch
What about that house full of memories?
Mom and Dad have lived in the same house for 55 years. We moved there when I was three. My brother was born three years later. We rode our first bikes in that yard, caught the school bus for the first time on that street, and stole our first kiss in the basement of that house. We celebrated birthdays and anniversaries around the dining room table and the walls hold photographs of our childhood and our ancestors too. Mom never threw anything away, especially if it had sentimental value. There are dozens of cabinets and chests full of trinkets of our lives. The closets are still the keepers of our first report cards and letters from our teachers. The hutch in the dining room holds all the crystal, china, and silver that we rarely used but were so proud to have. And I wonder, how do you pack 55 years of memories into a few boxes that Mom and Dad can carry with them into an assisted-living facility? How do you choose what goes and what stays? And then what? Will those precious memories become someone else’s auction treasure or a ‘best buy’ from a yard sale?
Understanding and Hope
As hard as it is for me to wrap my brain around this process, it must be much harder on my Mom. Dad may not even notice but Mom is terrified. Her home was her pride and joy. It was her sole purpose in life to provide a warm and comfortable home for her family and their friends. And now, she is being told, not asked, to give it up. When I look in her eyes, I see the sadness. I see the fear. I want to reassure her; to make this new adventure seem exciting. I want to believe that if I’m okay with it, she will be too. I need to believe it.
- Mom, I Thought Of You Today
I am not prepared yet to ask my aging Mother to give up the home she loves so dearly but the time is fast approaching. I have practiced the conversation in my mind often and it is still bittersweet. - About Alzheimers - The Decision, Fear, And Grief
Alzheimer's Disease will eventually affect you or someone you love. With the help of friends and family, you can make the hard decisions, face the fear, and deal with the grief.
Remembering the Lessons With Love
Life is a great teacher. It can teach us to celebrate health and wealth and it can teach us to appreciate and value each day. Many of us lose patience with the elderly. We accuse them of being stuck in the past. They don’t walk fast enough and their stories take too long to tell. We rush them along and listen with only one ear. We express our frustration when they resist change and refer to the past as the good old days while we refer to their present as the golden years. Tell me though, what is golden about packing a lifetime of memories into a few boxes and leaving the only place that ever felt like home?
Our elders deserve to be treated with dignity. They look to us now for reassurance and comfort; the same reassurance and comfort they gave to us when they wiped our runny nose or skinned our knees on the playground. When we were bullied at school they held us and told us how strong we were and that no one, nowhere, would ever hurt us as long as they were around. Don’t they deserve that from us?
It is impossible to really prepare to give up the home we have loved or the things that we collected over a lifetime. We can't prepare our parent or loved one for life in assisted-living but we can be a positive influence as they face a future of fear and uncertainty. We can remind them that a house is not a home. It is the love of family that makes a home. We can remind them of the days of your youth when their voice comforted you and promised to never leave you alone. Make them the same promise. Remember that fear has no respect for age and that even at 80, when you have lived through economic depression, illness, and death, that you can still be afraid.
We may not be able to pack all the memories of a lifetime into a few boxes but we can carry the rest in our hearts. And maybe, just maybe, once the dust settles, we can sit for a spell and share the stories.

“You might have loved me, if you had known me. If you had ever known my mind. If you would have walked through my dreams and memories. Who knows what treasures you might have found. Yes, you might have loved me. If you had only taken the time.” - Author Unknown

© 2013 Linda Crist
Comments
Linda, my heart goes out to you. My neighbor and best friend is now going through this with her mother, who lives in Georgia. Apparently, her mom is in the beginning stages. My neighbor has a niece who lives within miles of "Granny", but won't stop in to see if she's Ok or even spend a few nights with her. My neighbor is up there now, spending the week. Eventually, she will have to bring her mother here to live with her until time for more professional care.
It's all so sad.
Are your mom and dad both moving to assisted living? I just keep seeing the movie, "The Notebook" in my head. It's a beautiful, yet very sad movie. At the same time, it's a tale of true love 'til the end.
May God bless you and your family, Linda.
I feel your pain. It's a tough situation for everyone involved especially in cases where the person is not willing to cooperate. My mom was recently diagnosed with dementia and she's only 62 years old. For now, it's mild. My dad is the primary caregiver and my brother and I help as much as we can too, but like I mentioned, it's a challenge. I'm even thinking of earning a certificate in mental health counseling. It's important to stay informed as much as possible since this is a disease that unfortunately progresses. The idea of assisted living facility sounds scary and locking someone permanently is even scarier. thanks for sharing your story.
While I read your touching, sad piece, I saw my mother's beautiful face in every line about 'home'. When my dad died suddenly 10 years ago, my mom lost any joy in living. She rapidly became overwhelmed and began to exhibit memory loss and confusion. Her bypass heart surgery two-years ago furthered the process of dementia. She, like your mom and dad spent over 50 years in their home. Though her dementia is not profound, she has OCD, and any change is too much for her to bear. She has visited an upscale senior facility with independent living, assisted living and end of life care. Though she now must pay workers to maintain her large, beautiful yard and manage the tasks that dad use to handle, and though she complains at times about the tremendous amount of work in owning a home alone, she found many reasons for choosing to stay in her home for now. Unfamiliarity is disorienting and extremely distressful for her now. I do not envy the decisions you and your brother are having to make. I feel the most empathy for your dear mother, as she understands what is happening and will miss the familiarity of home. However, Linda, my mom's visits to Our Lady of Life were positive in the fact that she loved the conveniences of the apartment, which had a beautiful layout, new kitchen and offered one full meal a day served in an elegant dining room. She would have assess to a driver for grocery trips and doctor visits, too. I do that for her now and realize that, as her advocate for all medical visits, she can no longer remember the visits once we leave the office nor what the doctor said. I keep organized notes on every visit. At this point, my mom would need to enter into assisted living rather than as an independent apt resident. From what I have seen and personally know now about dementia, it is always progressive and sooner or later, everyone with a loved one suffering from any form of dementia must deal with the issues you have so thoughtfully shared. Thank you, Linda, and bless you and your family.
Dear one -- having taken care of my mom I know what you are going through. How wonderful that you had good and loving parents who have created a legacy within the hearts of their children that disease or time can never diminish. Best/Sis
So well covered;heartbreaking conditions and thank you for sharing. Voted up.
Eddy.
Your reply was compassionate and thoughtful so I wanted to clarify---I do not have a family member with Alzheimer's myself, but have known others who do. I also was a monthly volunteer for 2 years at a nursing home and there were some residents who did not ever indicate that they remembered me. The hardest was a lady who used to know me but then developed memory issues (not certain if it was Alzheimer's since I was a social visitor, medical info was not my business) and eventually said "Have you been here before?"...she only vaguely recognized me. It was so hard to see some of the drastic health deteriorations in residents too. That experience was small compared to what family members go through but it gave me a glimpse. There is a special kind of grief with Alzheimer's and my heart goes out to you.
I have been very lucky to see the "kinder" (if one can use those words) side of Alzheimer's via my neighbor Ken and the Masonic Homes. But now, blessings to you.
Oh, precious heart, you are being so very strong and wise too. It is a difficult thing . . . this life sometimes as we go through it, and you're so right, that the memories we hold in our hearts are the most precious.
Take it easy on yourself and know you are in my thoughts and prayers always.
Hugs and love, Faith Reaper
It really is the saddest thing. Some are luckier than others. It's like Russian Roulette, even doing all we can. My prayers are with you.
Heartachingly real and inspiring and helpful for others. I wish you and your family every blessing on this journey.
First, you are an excellent writer, but that really is mundane when discussing this hub. My heart goes out to you, Kindred. There are no other words necessary, but I'm a writer so of course there are more words.
I went over to my friend's house today and planted some bulbs for him. He asked me what bulbs were. This is a man who has gardened his entire life. Yes, Alzheimer's patients deserve empathy, compassion and dignity. My heart is heavy today because I am losing my friend, slowly but surely, but he will always be with me.
love,
bill
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