Almighty God says in The Quran:

“And some of you are left to reach the most feeble stage of life so that they may know nothing after having known much.”.

It is once again Fall here in Florida – cool mornings and fresh winds with accompanying bird-song – most suitable for long morning walks. For the past 23 years, I (and sometimes my husband) used to take advantage of the paths around my sub-division to walk and to savor. To feel alive.

In October of 2022, my life changed and I stopped going for these walks. This happened. My husband of 61 years was diagnosed with end-stage renal failure and with dementia. He also suffers hearing loss, and has suffered a stroke. Next Friday, he will not know that he is celebrating his 87th birthday, neither will he remember to wish me happy birthday on my 80th in November. His memory of these events, like many, many others, is all gone.

At the time of his diagnoses, his doctor told me to go along with his ramblings because to do otherwise might result in his getting confused. He was put on Hemodialysis and later, on Peritoneal Dialysis which was later discontinued. At this time of writing, he is not receiving dialysis.

His dementia is slowly getting worse. Some times, he is lucid and he recognizes his children even to giving them nick-names. More often, he rambles about things and events from his boyhood days in our home country and the people he knew then. Let me describe one such event. One morning when I was giving him his coffee, I saw a worried frown so I asked him about it. He said that someone (unknown) wants him to collect three dead bodies from somewhere and to take them to an unknown destination. I asked him if he knew these people. He gave me a name I recognized so I told him that I was going to contact a cousin of his and ask him to bring his truck to collect the dead bodies and to take them away. He nodded and fell asleep.

He is not mobile and lies on his bed 24/7, fed, changed, cleaned, shaved. Some of these offices are performed by a nurse from Hospice three times a week – one hour each visit. The bulk of his care is performed by our children – my two daughters, my son and his wife – without whom life for me might have become intolerable. My two sons-in-law fill in those blanks in their homes created when their wives are here helping with their father. My deep appreciation and my love go out to all of them.

For one year, I have watched him lying so patiently on that bed all day. All life-long day – sleeping or looking through the window or abiding by the commands of those who are performing the duties of caring for his bodily needs. He is not demanding, not loud, not abusive. He is just resigned.

I can’t lift him to put him in the wheel chair and even if I could, he might fall asleep two minutes later. His eyes reflect his sadness when his children perform the most intimate duties for him. My eyes can’t hold back the tears that fall involuntarily when I see him holding to the bars of the bed with one hand and the other under his cheek patiently doing as he is asked to do. His weight loss has left him looking like a bird with no feathers and with broken legs and wings.

Our lives go on day after day. The most difficult thing has been negotiating with Medicare to get more help than is offered by Hospice. My daughter works on this every day with Medicare, and with the different agencies trying to get some form of assistance with his care. I don’t understand why it is so difficult but she is persistent.

Hospice has been giving all that they are permitted to give and I am greatly appreciative. The private nursing aide help was paid for by my children but that stopped and we’re now left wondering where to turn.

After every hardship comes ease.