Life Changes: Caregiver Guilt and Elderly Depression: Meme’s Story: Part 5
This is Part 5 of an ongoing Medium.com series regarding my paternal grandmother’s “Meme’s” fight with Alzheimer’s and Dementia. My family first noticed the beginnings of the disease in August of 2020 with a sudden decline in December of 2021, leading to her placement in a long-term caregiving facility or “nursing home” in January 2022.
The other four parts can be found at the following links. I have discussed the beginnings of the disease to delusions, hallucinations, and paranoia along with the immune system problems, frequent infections, and lack of awareness that the disease also causes.
Part 1, Part 2, Part 3, and Part 4 are located at those links.
In the last part, I talked about the processes my father and I went through in placing my grandmother into a nursing home. Unfortunately, due to circumstances outside of our control, she was placed into a nursing home that we hadn’t had a chance to research or even know about.
In this section, I will be purely discussing the emotions that caregivers and those living with the disease frequently feel when this decision is made for long term care. Please keep in mind that my family is still processing these emotions; I apologize if my words come across as confusing or disjointed. Placing someone you love into a nursing facility is one of the difficult and emotional things to go through. You feel so many emotions at once ranging from guilt and grieve to depression and even anger.
As such, there are so many different sides in battling this disease. You have the story of the patient and their own emotions and struggles. And you also their caregiver and family’s emotions to sort through.
The one emotion my family (especially my father) is struggling with is guilt and grief. Caregiver guilt is entirely normal in this situation. Family members think that they “should” be able to care for their parent or grandparent until their dying day. Or that they shouldn’t feel some sense of relief when they are placed there. My father and sisters tried every humanly thing possible to avoid nursing home placement. It was only after my grandmother was placed in the hospital a second time that we understood we could no longer care for her long term. Four different doctors suggested placement, especially as her personal safety was involved.
(I applaud anyone that has had to give up their livelihoods, family relationships, and jobs to care for someone with Alzheimer's or Dementia. Know that this isn’t the option for many and 24 hour in-home care is costly and will not be covered by Medicare nor Medicaid.)
One thing my father and my family feel guilty about is that my grandmother can seem unhappy at times with the situation. She wishes for a private room, instead of a semi-private room and sometimes has disagreements with the staff. A reminder to everyone that you are still your loved one’s voice. If there is an issue at their home, make a complaint and be their voice. This is going to be their home now; it’s your job to make sure things are running smoothly as you can.
Yet, moving her into a home did bring us some relief. We are thinking that she will try to leave her home or fall with no one there to care for her and pick her up. One day my father became quite ill with pneumonia, I was so thankful that my grandmother was in the home at this time. Because I knew no matter how sickly my father was, he would still be there and attempt to care for her. Then, I would feel guilty for thinking this way. Again, these feelings are normal.
Another emotion on both sides, including my grandmother is grief. Grief of the normal routines and times that have passed. Gone is the normal routine of taking her breakfast and coffee, which my father enjoyed or taking her dinner at night and eating with her. Remember, my grandmother lived a house down from my father, mother, and my two sisters. We could literally walk to her home and spend afternoons and evenings with her. Things and times change, and it is important to become “used to” or accept this “new normal.” I myself am currently struggling with this issue and my grandmother is too.
One day, my sister and father visited her in her room. With a lining of tears in her eyes, she said “I miss these girls. I’ve been with them their entire lives.” Really, this sentence rang true. Outside of my mother and father, it was her who picked us up from school as children. It was her who organized family get togethers. And it was her that we could talk to about our issues and our problems.
My grandmother has the ability to see the best in everyone. Sometimes this has led to her being taken advantage of. But, she can see the potential and light in you, even when you cannot see it within yourself. So, as you can imagine, it was difficult in her telling me that she “hated” my father. Or that she had done so much for us, and we weren’t returning the favor. Of course, these were moments when she was confused and angry.
We are still adjusting to these new arrangements and try to see her on the weekends whenever possible. But, I would be lying if I would be saying that coping with this situation is not difficult for both parties. Just like my grandmother has “good days” and “bad days” as far as mental decline, we have our “good days” and bad as a family. Sometimes we can accept where she is, and other days we are in a fog or are depressed.
This is especially trying for my mother and sisters to see our father struggling with depression. His brother, father, and sister left this world long ago, and now he feels the weight of the world on his shoulders. For example, he questions whether or not me made the right decision. Caregivers frequently question this when the patient is having a good day. However, I frequently remind him that these feelings are normal, and it’s okay to have these conflicting emotions.
I frequently battle with the issue of my grandmother and parents own mortality. This has made me question what I will do without these influential people within my life. Also, I struggle with the acceptance of this situation and the conflicting emotions in wanting my grandmother’s own death.
Please do not judge people and caregivers in these situations. I myself have no idea what it is like to be in my father’s shoes. However, there are some days that I know it would be better for my grandmother if she just joined those that she lost. This is especially evident for me on days when she doesn’t know where she is at or that she is depressed or hallucinating frequently.
I just know that my grandmother is suffering from this dementia. And I know exactly the route she is headed. She will eventually not remember anyone and become in a vegetable state. And I do not wish that on anyone. But, it seems that only my father, sisters, and mother understands where the course of this disease can lead. My mother watched her own mother retreat into a shell before passing away. Other members of my family seem to be in denial or lack awareness of this disease and its course. My immediate family understands that my grandmother cannot come home, no matter how much she wishes it and we wish for it.
Agingcare.com has offered some tips in dealing with caregiver guilt:
- Realize you didn’t cause this disease or decline.
- Understand that professional help is often needed.
- Understand that you cannot live your life for others.
- Talk with family, friends, therapist, or counselor about your feelings.
- Acknowledge that you can only do the best you can. (I frequently tell my father this one; you can only do so much for the ones you love)
Another thing for caregivers and family members to do when they visit is to talk about the patient’s feelings. I ask my grandmother to tell me what she is truly feeling: for example, is she angry, hurt, depressed, anxious or all of those feelings. I just allow her to have someone to vent to. However, I often tell my father that it’s okay for him to leave the room if she turns her anger towards him. Although I know she doesn’t mean the things she says, he doesn’t have to suffer that sort of emotional abuse. I also try to bring her a little something each time we visit. For example, I will bring her coffee since that is one thing she’s missed from her home. I also try and call her everyday and let her end the conversation; these conversations can last from 10 minutes to two hours. But, I make the time to do this.
Other ideas from DailyCaring include:
- Reminsicing over old photo albums together.
- Bringing food/snacks or meals.
- Adding a furry companion: (my sister bought her a stuffed Yorkie due to her being unable to be with her real pet, Toto).
- Going on outings together: e.g. wheeling them to the dinning room or outside areas if available.
- Watching TV, movies, or listening to music together.
And so begins the journey of accepting the dementia and this new relationship with my grandmother.
Part 6 located here.
Sources:
“Coping with the Decision to Put Your Parent in a Nursing Home.” AgingCare.com Accessed April 20, 2022. https://www.agingcare.com/articles/coping-with-nursing-home-decision-149754.htm
“Guilt and Grief When Moving Your Loved One to a Care Facility.” Alzheimer’s Association, July 1, 2017. Accessed April 20, 2022. https://www.alz.org/media/greatermissouri/guilt_and_grief_when_moving_your_loved_one_to_a_care_facility.pdf
“10 Fun Things to Do with Someone in a Nursing Home or Assisted Living.” DailyCaring.com, January 1, 2018. Accessed April 20, 2022. https://dailycaring.com/10-fun-things-to-do-with-someone-in-a-nursing-home-or-assisted-living/