Hospice Care and the Last Stage of Dementia: Meme’s Story Part 12
Good morning, afternoon, evening, or whatever time you’re reading this. If you are just tuning in, I am writing about my paternal grandmother’s (Wanda or “Meme”) mental decline with dementia in order to raise awareness about the disease and its effect on the person and caregivers. You can find the other parts here.
It’s been a while since my last post in October. I did enjoy the annual Walk to End Alzheimer’s in Jonesboro, AR. It was a pleasure to volunteer with the committee, to hear stories of other caregivers, and to come together for a cause. It’s that connection of love and support that the world could use more of these days. You can still donate to our walk for the Alzheimer’s Association until December 30th. You’ll find the link here.
In the meantime, my family and I have been facing pressing news and struggles. My grandmother caught the flu which turned into pneumonia (again) and a hospital stay. Meanwhile, my family has been dealing with a flu since November 20th. (We were planning to get our flu shots after Thanksgiving, but the best laid plans of mice and men….) Because of this illness which has also been taking its toll on my father and mother (one has COPD, the other diabetes), we haven’t been able to seen my grandmother for three weeks.
During that time, our family had a visit with her doctors. Anytime the doctor asks to speak to the family, it’s usually not good news. My father had to listen to the call on speaker phone due to still having the flu. Basically, in addition to my Meme’s growing health problems and dementia, she was also found to have Zenker’s diverticulum. This is a forming of an off branching pouch of the esophagus, causes the patient to aspirate food and liquid into the lungs. Sometimes this can be corrected with surgery or feeding tubes, both of which are usually denied to dementia patients.
Therefore, the family decided to place my grandmother in hospice care. It is a much quieter and peaceful environment with one to one nursing. So much better than the nursing home she was in (BTW, no nursing home usually has “good” quality care).
My father asked the doctor if there was any way she could get better. You always need that confirmation from some one else. Especially when you have final say as a POA for your parent. The one that raised you and cared for you as a child. As many people believe that hospice care is condemning one to die. I don’t think this is true, it’s just a place to keep a patient comfortable and pain-free as well as giving patients care and mercy at the end of life.
It was difficult not being able to see her because of our family’s illness. Although my father and I did get to see her before went to someplace we cannot follow. And here is the part in the story where my heart begins to break.
In the last and final stage of dementia, a patient is bedridden, unable to move, feed and dress themselves, or even speak. The day after my father and I visited her, he received a call from my great aunt. God love ’em, my mother’s brother and sister-in-law have visited her everyday. On the phone, my aunt stated that Meme was not speaking at all, and could not recognize them. This was it. The last and final stage that I have been dreading. I was pleading and hoping that God would take her home before this began. But, alas, I am not (and thankful I am not) the Almighty.
My sisters and I broke down in tears as it confirmed to us that she may not have much time left. And during Christmas time too, a time that will now be hard for all of us. My sister Kaitlyn was very upset that she didn’t get to talk to her before she hit this last stage. I reminded her that not visiting her in hospice shouldn’t erase all the memories we had with her, and all the joys we gave her. We could still see her I assured them, even if she didn’t know who we were.
And so, I have been looking and researching how to communicate with someone in this later stage. Dailycaring.com says to remain calm, positive, and to smile (even if you might be faking it). Talk to them at eye level, maintain eye contact. You can even give them a hug by putting your arm around them, hold their hand. Don’t underestimate the comfort of touch, hearing, and sight.
My family’s journey with dementia continues. For how much longer, I don’t know. I do know that during my last visit before my grandmother stopped speaking, she told me that she loved me, and begged to ask us when we would see her again. My father replied, “as soon as we can,” not knowing that the next day he saw her, she would not know who he was.
I ask that if you’re a praying person, to keep my family in your prayers during this holiday season. Holidays are hard, especially for families going through this journey or are grieving. From one Christmas last year, my dad and sisters were trying to take care of her, to now less than a year later, my “Meme” has gone to a place that I cannot follow. She is lost in her own mind, regressing to an infant-like state. I don’t mean to bring readers down with this post. But for many families of those with Alzheimer’s and dementia, this is the harsh reality. It’s difficult on this journey, and as I try to raise awareness for this disease, I am struggling to hold on to the memories of my “Meme.”
Wishing you the best holidays and happy new year,
❤ Kelsey
Part 13 can be found here.