A Day In The Life Of…
While becoming fascinated by the intricacies of memory loss and dementia, I have been offering advice online through groups of those caring for a loved one with one of the many varieties of cognitive decline, including Alzheimer’s or dementia. There are many themes which rise to the surface of their exhaustion and despair while caring for someone whom they know will not be recovering, no matter how much love and attention they receive.
The most prevalent of all is how abandoned many of these people feel, by their brothers and sisters, aunts, uncles, sometimes even their own children, and especially when caring for a parent. The responsibility generally falls on the one willing to take on the “caring marathon” which lies ahead, although unaware of just what will be required of them. Often siblings live in other locations… an hour away…a state away…a continent away. Those who are not physically involved in the process can proceed to live their own lives as normal. They can be supportive by picking up a phone once in a while (although many do not even exhibit this small kindness), but the caregiving family member needs so much more. It has become clear, from more than a hundred posts which I have read, how often the expenses of caregiving are overwhelming, and yet the siblings often do not offer to help. Family members may live close enough to share the burden of day-to-day care, doctor appointments, and the full-time requirements of the loved one, and yet they do not always step up to the plate.
Often, I read that family members deny that the mental condition is serious. They explain away or deny the examples given by the one who is with the loved one 24/7 and essentially abandon their responsibility to share this difficult experience. No one really wants to have their lives impinged upon by another’s illness, but pretending that “it has nothing to do with me…” is a terrible option. It is kind and charitable to be supportive of family members going through these crises, in spite of family history and irritations over the years.
After reading about a young man who has been taking care of his Nan for many years, I wrote back to him and asked if this was of his own choice or of necessity. He said it was not of his own volition, which tells us that his family is fragmented at best. I wanted to ask where his parents are, and if there are other actual adult children of his grandmother, but I did not. I am sure that the answers are painful and are not really any of my business. I promised the grandson that I would write a chapter for The Dementia Diary which I would title “A Day in the Life of…” so that he could send the chapter to all of the family members who have abandoned both he and his Nan.
This morning, I began composing a list of Hubby’s needs which he expresses from moment to moment. Like all sufferers from this condition, he is able to identify what he wants, and yet is unable to resolve his need. I use the word “unable” because it is critical to comprehending how much falls on the shoulders of the family caregiver. The committed, loving person who has accepted that they must stand by their loved one until the end is not only overwhelmed by the requirements, but often heartbroken by being abandoned by their siblings or others who should be offering assistance of some form.
Each and every day, my own Hubby says the following sentences, all of which require me or his aide to stop whatever we were doing to resolve the need expressed. If we do not, it is the nature of cognitive decline that the patient will keep asking for the same item until the task has been filled. Because of their loss of memory, they repeat a request over and over, basically demanding your attention and your energy. Thus, the list begins:
- I need my glasses.
- I need NEW glasses… these are no good any more.
- Where is my watch?
- What time is it?
- Is my watch working?
- Did I have my shower?
- Did I brush my teeth?
- I need my blood pressure taken.
- My coffee is too hot.
- My coffee is cold.
- I am hot.
- I am cold.
- I have a headache.
- I need a haircut.
- I have food stuck between my teeth.
- I have a loose tooth.
- I feel nauseous.
- Do we have any appointments today?
- When can we go to a restaurant where I like the food?
- I cannot eat any more. I have no appetite.
- Where is my breakfast?
- Where is my lunch?
- Where is my dinner?
- My food is cold.
- Is that all that there is to eat? Nothing else?
- This food makes me nauseous.
- Where is my phone?
- I need to shave.
- Where is my money?
- Where are my keys?
- I need the bathroom.
- I am thirsty.
- I need a rest.
- My pillow is not comfortable. It is not under my neck.
- Where are you going?
- Where is everyone?
- Is anyone going to help me?
- Who are you talking to?
- Where is MY mask!
- Why are you ignoring me?
After having provided solutions to each of the questions above, one begins to falter from sheer exhaustion. Enough is enough. The loved one notices that you are no longer enthusiastic about rearranging their pillow for the third time, which elicits the following predictable response:
- YOU DON’T CARE!!!! YOU DON’T CARE ABOUT ME AT ALL!!
This is of course, all in addition to the caregiver’s other responsibilities: cooking for the loved one…washing their clothes daily…buying their supplies and medications…making sure they are clean and sanitary, making doctor appointments…taking them to the doctor…entertaining them so they are not bored… filling in forms required by bureaucratic agencies…and financing the load on their own.
Everything that I have mentioned so far, applies to loved ones who are able to speak and are mobile. For those who can no longer stand, walk, or turn over in bed, the caregiver’s work is ten-fold more difficult, requiring a second person to be hired or to volunteer to assist with the physical requirements in addition to the general needs.
Thus, for family members, who wish to go unnoticed, or who run away from their responsibilities by pretending there is really nothing wrong with their loved one, and presuming it is all in the imagination of the exaggerating care-giver, I invite them to rethink their avoidance. Who will care for them when they are old, if they have not set an example by pulling their weight? Will their own children abandon them if they remember a grandparent having been abandoned? It is worth considering. It is worth re-assessing. The family member who has been generous enough to accept this burden, needs your assistance (in person and possibly financially), and your respect, not to mention your sincere appreciation.
You absolutely have my permission to forward this chapter to anyone who needs a gentle reminder.
