Decision time after the diagnosis:

Part 9, home care or long term facility?

This is the ninth in a series of articles written by Frank S. P. Yacino regarding Alzheimer’s disease. He is the husband and caregiver for his wife Barbara who has been struggling with this disease for over fifteen years.

In the first article of this series we briefly touched upon the subject of after the diagnosis of the patient. In this article we shall expand further the dilemma of what to do and when to do it. This will relate what our family did with Barbara and how we approached the subject.

In late 2004 we all sat as a family at the house----our four children and their spouses--- to make decisions about what to do with Barbara’s declining health as it pertained to the  house, cars, Wills, Health Care Proxies, Power of Attorney, and the future of Barbara staying at home. (This was all done prior to joining the Support Group, which is where we learned a lot on how we would care for Barbara.)

It was agreed by the nine of us that as long as my health was good our goal would be to keep Barbara at home and all of us, in some way, would contribute to Barbara’s needs. At this time she was still able to feed herself, toilet herself and bathe herself, so our contributions were minimal for the next couple of years. I was able to leave Barbara alone when I went to work or meetings and occasionally one of our children would come to stay with her.

We knew then that the disease would progressively get worse and we’d have to revisit our goal of keeping her at home from time to time, which we’ve done. We did not want to place her in a Long Term Care Facility until it was absolutely necessary. And that is still our goal today.

In many families this may not be an option---keeping the patient at home---due to extenuating circumstances, such as no immediate family living nearby, the patient is not married and has no children, the patient has no siblings, the patient has other medical issues besides Alzheimer’s, and the list goes on. Then there may be a family where siblings cannot all “get on the same page” and have various ideas on the proper care of the patient. And in some families it seems some siblings want nothing to do with the care of the patient and one sibling will carry the brunt of the patients care and the other siblings criticize the caring sibling for everything he or she does without offering any help. My suggestion to the caring sibling is to seek the advice of an Elder Attorney on how to file for guardianship of the patient, thus there will only be one decision maker. Decisions by the family must be made in unison for the patients care and well being. Our family has been on the same page from day one and that makes it so much easier to deal with one of the worse diseases a patient can be diagnosed with. Cooperation and understanding by all will make this journey much easier for everyone.

In March 2006, the facilitator of our Support Group brought in a guest speaker from Summit Elder Care. After she explained the program, called PACE (Program of All-Inclusive Care for the Elderly), our family members with me at the Support Meeting became very interested in what was said and we sought out more information about this program for anyone over fifty-five years of age or older who met certain criteria. A few weeks later a nurse visited our home to assess Barbara and found that she could qualify for the program. We filled out a few forms and other paperwork and submitted them for final approval.

By May 1, 2006, Barbara had formally been accepted into the program by Summit and began to attend Day Care once a week. We were also able to get help to come to the house to care for Barbara while I worked, shopped, had doctor appointments, worked outside in the yard, or did other errands. This practice continues today, although now Barbara attends Day Care twice a week on Monday and Wednesday. On Tuesday, Thursday, and Friday an aide comes from 9:30 AM to 1:30 PM to tend to Barbara’s needs. On Saturday an aide comes in the afternoon so that I may attend church.

Over the years Barbara has lost the ability to walk and I am now unable to pick her up or carry her. This problem was taken care of by Summit by providing a Sara-lift to pick Barbara up to move her around the house, place her on the portable commode, and to get her in and out of bed. At night and in the morning it requires two people to put Barbara to bed and get her up in the morning, so aides are at the house each morning and night of the week to help me with that part of Barbara’s care.

Other special items that we have at the house for Barbara’s care are the portable commode (as previously mentioned), a wheelchair, a transport chair, an electrical recliner chair that Barbara spends most of her day in, and a hospital bed with an air mattress.

So you can see, if you are a caregiver or about to become one, keeping the patient at home does have its challenges vs. placing the patient in a Long Term Care Facility where the caregiver does not tend to the daily care of the patient. Each family’s circumstances will be different and that will be the basis for a decision by the family members as to where the patient is cared for. There’s no right or wrong in this situation, and if the family makes a final decision to place the patient into a Long Term Care Facility they should not try to second guess their decision or feel guilty for having done so. In retrospect I am sure they will say it was the right decision later on.

I will emphatically say this though, if you do decide to keep the patient at home, know that you will be in for a lot of work; but also remember that there is help out there through several programs and you will need all the help that you can get. Trying to do it all alone may prove to much for some, however there may be a select few that will be lucky enough to handle the situation, depending on their mental state, age, and health. The decision you make could be for a lengthy period of time. I wish you all good luck in your deliberations and final decision.