The Transition: How Do You Cope?!?

CJJE · April 2021

Well, the time has come: my LO with Alzheimer’s disease will be transitioning to a SNF with MC next week. I have been my 79-year-old mom’s primary caregiver since 2018. She’s widowed and doesn’t remember ever getting married or having a child.

Tuesday, an admissions specialist came to the house to observe Mom. At that point, I had reconciled that I am not a PT, OT, SLP (yet…just enrolled in pre-SLP courses), or a nurse or doctor or nutritionist, and I cannot do what I’d give the world to do or continue doing for her. She deserves a higher quality of life than what I could ever attempt to provide. With that said, I had a sense of relief and contentment and gratefulness that she will finally get the care she deserves.

Then, the specialist called me Wednesday morning and said, “Hi, we can actually get her in tomorrow, if you can bring her. All you’d need to do is [insert checklist].” I froze. I wasn’t ready for that. I was expecting a drawn-out admissions process and a super long list of things to do beforehand. I was definitely wrong. In that moment, I froze, I started thinking about all the things I need and want to do before admitting her, I questioned if admitting her was truly the right decision, became scared and sad and angry, and I cried. I’m 31, but the little boy in me cried and cried all day Wednesday. I could barely get through my classes (I teach music at a college). I thought I was ready to be relieved of caregiving duties to just…be her son (or father or brother or friend…whoever I am perceived to be in the moment). Clearly, I’m not. I’m scared, I’m sad, and feel so much guilt that I’m moving her out of her home. My mind knows it’s for the best, but my soul weeps in such a deep, distraught way.

Next Monday (May 3), I’m pre-arranging her funeral, meeting with an elder law attorney to protect her assets, and faxing over medical documents to the SNF. Tuesday and Wednesday, I’ll give my students their finals. Thursday, I’ll be packing up Mom’s stuff. Friday (May 7), I’ll be moving her into the SNF. Saturday, I’ll be attending my students’ graduation. What a rollercoaster of bittersweetness.

In the midst, I’ll have to break the news to her family who have been extremely unsupportive and hurtful in every way since the beginning of this journey. I don’t want to deal with them anymore, but that’s their sister/aunt/cousin, and the reality is that though they don’t help in any way, they are still grieving and feeling regretful and sad, and I would not be human if I didn’t feel any empathy or sympathy toward them. It’s weird because there’s also a bit of resentment on my end. Family dynamics are weird sometimes.

The best way I can describe my current feelings is that I feel as if I’m about to be an orphan. It’s such a strange feeling. I’m an adoptee taking care of my adoptive mother. I met and connected with my biological family for the first time in 2015. I grew up with my adoptive parents and my adoptive maternal grandmother. Daddy passed away in 2013 and Grandma (from dementia) in 2015. My little family—my sense of familiarity—has gone from 4 to 1. I absolutely love and adore my bio-fam and my beautiful supportive friends. I know I’m not alone. I know I’m not. However, I’m weeping as if I’m an abandoned child with no direction in a cruel, dark world.

How do you deal with the grief and guilt of placing your LOs into a facility or somewhere else that is not their home? Thinking about leaving her inside the facility for the first time crushes me. It absolutely crushes me, and I know it will be devastating.

Sjodry · April 2021

Hi CJJE,

This is truly a challenging and emotional journey at all stages. I would suggest to you the same thing I have done, to reframe my thoughts and perspectives toward the journey itself and the choices and decisions you have to make along the way.

Making a placement choice for your mom that will ensure her of the care and security she needs is never a selfish or wrong choice, albeit a hard, emotional one. You will still continue to be her loving son.

I have found it easier to focus on the positive things that mom can still do or say, instead of keeping myself in sad mode at all that she has and will continue to be robbed of. Yes, I feel robbed of the precious mom I have always known, but Alzheimer’s is a cruel disease.

You are making the best possible decision for moving her to a facility for her care, not abandoning her. Many of us have been determined to provide care “ourselves” to our loved ones, until we are either burnt out from the inescapable care-giving or just hit an emotional wall totally depleted. The disease forces us to make hard decisions we would rather not have to make. Do not allow yourself to tell yourself that you will be crushed when leaving her at the facility..instead tell yourself that you have made the kindest and most loving decision for her benefit that you could make. I have an Alexa Show 8 in my mom’s room. I can “drop in” on her at any time of the night or day. I can just look at her or have a video chat. This is also helpful in more easily accepting the placement decision.

As for family (and all that goes with it), I do my best to let it go. “It’s just me” and I make all of the best decisions that I can. I mentally keep my boundaries with regard to family “suggestions “...aka if you’re not in the care-giving trenches with me..you don’t get a vote.

Please know that all of your emotions are valid and that we all share some degree of the same. You will move into a new normal in terms of the placement and adapting to it. Allow yourself to have all of the sad emotions about the situation because it is sad and horrible. But try to keep the positive self-talk nearby to fortify yourself!

I have heard the saying many times through the years..”Let there be light”. But awhile back, I decided that I needed to be that light (I changed the quote to, Let Me Be Light!). This helps me to know I am making all of the best decisions for my mom when I am lighting her way.

Be strong. There will be many sad days, but the wonderful, heartwarming days are not over!

Take care.

Sandy