Caring for Aging Parents
What I know now: Caring for my dad who has Alzheimers
For the past couple years my Dad has been slowly slipping into the grasp of Alzheimer's. The neurologist diagnosed him in the first stage. An unexpected bowel obstruction and subsequent surgery this past August catapulted Dad into the end stages of Alzheimer's. Here was an independent man now unable to relate to us or express or care for himself.
After months in several hospitals, the prayer and hope by his doctors and family was that Dad was experiencing postoperative delirium from the effects of the anesthesia from which recovery was possible.
It was not to be.
Today, my Dad is in an Alzheimer unit in a nursing home. He never recovered his faculties after surgery.
What I Know Now:
*My dad and mom were each in their own crisis.
Whereas, it was a seesaw on where my siblings should focus our attention, it was clear that two lives who had been joined for 55 years were now separate with individual needs.
Dad's most immediate need was to find a home with a long term bed to place him in. My mom's need was to shop for a nursing home with us. But in the end, she was unable to make the decision for placement. As she was going back and forth, clearly indecisive, my brother finally asked my mom if she would like her four children to decide together on dad's placement. "Yes," could not have come out of her quicker.
*Looking for a home is a very sad shopping trip.
After all the years the three of my sisters and I spent shopping with my mom, this trip paled in comparison. What do we look for in a nursing home? As in most situations that we find ourselves thrown into that bare so much emotional weight, we felt helpless.
However there are some excellent resources online on scores etc for nursing homes. After tossing out a few on our list, mom and I settled on four. This was enough to look at for one afternoon. We tried to laugh about much and also to be honest in an attempt to dilute the reality that we were finding a new home for my dad in… an institution. Two out of the four did not have “locked facilities” (my dad needed his facility to be locked because he is a "wanderer.") We also needed a bed immediately and we also needed it to be a Medicaid bed.
That left only one viable option.
*Yes, you will be developing a whole new vocabulary as each disease has its own set of familiar terms you wished you never had to speak.
You will also have to remember security codes, room numbers, meal times, staff and roommates names. Enough new things to absorb that I often felt like I needed a room too. Yes, I also found out that Alzheimer's, especially early onset, is hereditary. Expect to be exhausted.
*We waited too long to delve into my parent's financial matters.
Since dad was in early stage we thought we had time and so did mom. Dad took care of all of this for all their married years. Now, we were left at the kitchen table with mom in a puddle of tears amongst a pile of file folders and bills and insurance statement from the two months dad had been hospitalized.
Take charge early. As our situation proved you just never really know when it's too late.
*Mom had to apply for Medicaid.
Did you know there are attorneys who handle getting your finances in line for the official meeting? At this point with so many to-dos on our list, we decided to split them between the four of us kids. Yes, as callous as it sounds, this is one of the biggest projects a family will have before them, and unlike our day jobs, one that has an emotional component that bubbles over often.
My brother spent the last two months going to attorney meetings, combing through all the finances. And just this week, taking mom to her appointment. The process to apply for Medicaid is tedious and long and gripping but in the end, it will allow my mom to pay for my dad's care and will give her an allowance for expenses. Since their house is not paid for, mom will have to sell and either find a small apartment to live in or live with one of her children.
Many times mom during the Medicaid application process, she had to be encouraged to keep going along because the thought of being uprooted from her home was overwhelming to her. (And us, too, really.)
*Your siblings will take back the roles you’ve all had when you lived under one roof.
The bossy one, the absent one, the one who has THE right answers, the one who sits in indecision. Accept one another all over again.
You need each other more than ever.
*The independent spouse, in my case my mom, will be depressed, sad and either need to share this or hide out in denial for a bit.
Allow both extremes. Denial is a good friend for my mom as it is a temporary pause for her in the midst of all the life changing decisions and work she has before her. It is clearly not helpful for any of us kids to push mom when she is courting those dreaded questions: Why me? What's next? Where am I going to live? How am I going to do this? Where is God?
There are no answers, really. Spend time listening. Because if I’m perfectly honest with myself, I have the same questions.
*We all are grieving dad as if he has died.
This is a very awkward feeling as you wander the halls in the locked unit walking beside him. Yet that is exactly what it feels like.
*It is okay to ask for God to take him.
A prayer was shared with us by another family experiencing the same. "Dear God since he can't come home with us please take him home with you".
*Expect a wide variety of personalities of nursing home staff, just as you would in a restaurant or business or in your memories of teachers.
Some will be caring, loving and kind; others will be irritated with any requests and some will seem to take on the personality of the patients they deal with all day and night. Get over the disappointing staff as soon as possible. This is life inside an institution.
I am still learning.
What I do know is to make friends with the staff. Being grateful for persons who would work in these homes helps a lot.
*It's okay to laugh, and it feels good.
My mom is amazing to me. She has kept her humor most days.
The other day she told me she had a great idea: Weight Watchers should hold its weekly meetings in the dining rooms of nursing homes surrounded by the residents dining. A fail proof way to lose your appetite. I know it curbs my appetite every time I join them.
*If you are still raising your own children expect to be surprised at the tenderness and creativity they have when visiting the nursing home.
Let your children in on the pain and be available for questions. Also, expect you will also feel you are carrying their load of grief. My youngest daughter had to run out to the courtyard and hide behind a climbing vine. I followed her and found her sobbing uncontrollably. She still sits behind me if we are talking to dad in bed. And that’s ok.
Allow your children to do it their way!
*Read whatever you can on how to visit an Alzheimer patient.
Although, right now all my family needs is a good pair of sneakers to keep up with dad's wandering. There are many helpful sights and associations with information. If research and reading is just too much on top of everything else, do it anyway.
Expect to feel like you have no idea what to do or say with your loved one. Dad has said so many things to me that don't make any sense. The words are all strung together and sometimes he is happy to just have a monologue. Yet, sometimes he will stop and look at me waiting for my response or answer. “Ummm, ummm, good luck,” is all I have to say.
*Spend as much time with your aging parents as possible, bring the kids and the pets. Tomorrow is not guaranteed.
Because we knew dad was starting to slip, we spent most of the summer with him. That was a blessing. You will never regret the time you spend with your parent(s).
*Be ready to be discouraged and motivated to do something to raise the awareness of the plight of the elderly in our country.
This world of institutional care I have been invited to be part of will prick your heart. Are we keeping people alive for this? Many have strong physical bodies but their minds have gone. God's doing or man's?
Hard deep questions but each time I enter the home and drive away I wrestle with this.
*On my good days with dad I swear that he still knows me.
However, on most visits I am not sure he knows who I am. I am familiar to him. What is missing is the way he used to look at me, the "you’re my daughter and I love you so much look."
Cry and cry some more and dig up the notes and birthday cards he wrote to you that you kept for just this moment. Cry some more. It helps me to look at pictures of dad when he was alive and aware. He had a full and a productive life and that is what I cling to whenever I get discouraged and sad.
Margaret Furnas is married and the mother of four daughters. She lives with her family in Chagrin Falls, Ohio.
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