I received an email from a woman I have been corresponding with for a year or so. She is struggling with caring for her mother in law, in her home, and dealing with the roller coaster feelings of waiting for death to arrive. As a care giver she is tired, angry at life’s turn of events, frustrated, and concerned for her husband’s reactions and ability to care for his mom. All normal feelings yet extremely difficult to navigate on a day to day, month to month and, at this point for her, year to year basis.

With her permission, I am posting part of one of her heart felt letters because there are many families coping with the care and approaching death of a person close to them. The anguish shown here is happening across this country. It shows the holes in our health care system--if you aim for treatment, have health insurance or Medicare, doors and financial assistance can usually be opened. If custodial care is what is needed most health care doors are closed. In-home shift care, which would be most comforting and is generally needed to assist the family care giver, is expensive under private pay and almost not existent through insurance or Medicare. There is a large financial gap between who is eligible for medicaid and who can afford the cost of in-home care or even nursing facility care. The result of this lack of supportive care is people living, or shall I say exiting, in stressful, no end in sight but eventual death, situations.

I imagine hearing you, the reader, question, “But what about the home health care and hospice care that is provided through Medicare for these families?” Well, it is not that simple. In order to be eligible for Medicare Home Health Care, a person must meet the medical requirements which show continuing signs of improvement. The medical requirement for Medicare Hospice is that the patient must show continuing signs of deterioration. Unfortunately, there are a lot of people that only show the continuing slow decline that simply old age presents: the decline that leaves some of us incapacitated for months and maybe years. It is possible to become incapacitated to the point that we cannot be responsible for the daily tasks of living yet do not have a medical condition that responds to active treatment required by home health or a condition that has death approaching within months as required by hospice.

Enough of my soapbox. Please post your thoughts concerning the following letter:

Barbara,
I wanted to tell you a couple of things. It is still a situation here where my poor spouse is losing his grip, patience, and his mind. MIL (short for Mother In-Law, the patient) is not bedridden although she could easily be because he (patient’s son and spouse to the person writing this email) still insists on keeping her up and moving.
She seems to be so incredibly frail now (70 pounds) and he is so spent he lets her sit in her recliner chair and really does not move her to the toilet or change her much. No point he feels. Like a toddler she gets upset when the aide comes to give her a bath. She eats small portions still and constipation is an ongoing ordeal. Husband has noticed that Ensure makes her constipated.

A friend is also taking care of her mom for like 6-8 years now. She had to quit her job to care for her. Her mom decided back at one point that it was too hard to move and walk so she decided to stay in bed. My friend said it is actually much easier now to care for her. She uses tab diapers, an aide cleans her up and my friend gives her mom finger foods on a tray in bed.

When she made that suggestion to my husband he said he just “refuses to do this”. I made a joke about he and God having a tug of war with her. Like God is pulling (evidenced by her not wanting to eat much of the time) and he sitting there encouraging her to eat.

I verbalized this morning something when he got philosophical about waiting in life for things... waiting to grow up, waiting to drive, waiting in line for something, waiting to be old enough to have a beer or a drink, waiting for a date, for school, for employment, for retirement... and then waiting to die. That’s what we are doing. Waiting for her to die.

I did some checking on Medicaid and tossed ideas to him and he did tell a social worker a few weeks ago that he may give up when she cannot move. It seems that Medicaid is hard to find out because I get so many different answers from so many different people who say they understand it.

Anyway… we are losing our grip. I got in the shower yesterday and was almost finished when I realized I had not washed my hair. I lost it for a day. He is losing it daily and I hate to see him like this.

This is the most difficult journey I have ever had in my whole life.