It seems I have helped care for elderly relatives most of my adult life. HELP being the operative word here. I would have a “shift” which I shared with my mom when we were caring for my grandparents at home. There was no Hospice/Solace. We were pretty much on our own. My grandfather had a pacemaker ( he was on his third one when he died at 91) My grandmother spent 5 years in a wheel chair, passing away at age 96. We took grandma to the toilet, one of up holding her up with her hands locked behind our neck, the other pulling down her pants and sitting her on the toilet, cleaning her afterwords etc. Grandpa was mobile, but sometimes, his heart issues would cause him to just collapse on the floor. He would “wake up” after softly sinking to the floor and we would sit him down to rest.
When my mom had a health issue that left her weak and needing help, or when she broke her hip and had a hip replacement, my father was relatively well, and again, I was the HELPER, not the primary caregiver.
This time it is different. We have had a lot of trouble getting doctors to work with my father, just as I had after suddenly loosing my teenaged son. It seems they just don’t want to deal with the patient-passing them off to some other doctor who does the same thing-”We don’t treat that>” We were often referred to a doctor whose specialty was so far from my fathers real problem, it was laughable. My father had used catheters to urine for years, but it had gotten to where he frequently couldn’t “cath” himself. He would keep trying and end up with an infection. The doctor would prescribe antibiotics after examining a urine sample and schedule a re-check in a week or ten days at which time, dad would be “clear” of infection. A week or two later, it would be the same thing all over again.
Finally, in mid-May, father, very ill and in pain finally insisted that I call his “regular” doctor and hand him a phone. When he finally got though the annoying recordings and go to talk to a person, he simply said, “I need to see the doctor NOW!”. And surprisingly they had me bring him right in. That evening, after supper, the doctor called me and told me that dad’s calcium levels were extremely elevated, and to get him to the hospital ASAP. My father was living alone at the time, so my husband and I went to try to borrow a wheelchair from my aunt, who lived next door to him. She suggested we call an ambulance, because then they would take him straight in, and we did.
MY father had chronic Lymphatic Leukemia, one working kidney and several other intestinal issues beyond the catheterizing, so it took four antibiotics to get him over what ever the “Extreme calcium rise was”. Even though various doctors talked to us, all we were really told is that they didn’t know exactly why the “rise” in his calcium levels had happened. Since they ordered “small needle biopsies” on his abdominal lymph glands, we knew that the condition had to with his chronic condition.
One doctor came and talked to my father and I about the what kind of doctor he was. He asked dad if he knew what a “onocologist/Hemotologist” did and dad said, “Yes, they treat cancer”. The doctor tried to explain that at dads advanced age (87) and health, it would be more dangerous to do a biopsy where they had to make an incision than to just see what they came up with in the needle biopsies. They told us that he was the oldest patient they had ever treated with all these problems AND STILL FIGHTING.
I guess that is good, but the continual passing from doctor to doctor, and after this hospital stay from nursing home to the hospital again for pneumonia was very hard on all of us. I have not been in good health since the sudden death of my son, so the constant “visiting was very hard on me.”When dad started out on every IV antibiotic hey could think of to fight the pneumonia, my daughter and I were literally courted by Solace, even given a tour because they thought he would not recover. Solace was in a nice, new facility, but they don’t give even the very amount of therapy the “nursing homes “ do. It is not in their protocol. I hate to be mean, and don’t intend to be insulting to Solace/Hospice, who have been very good to us, but when dad didn’t die right away, they began shuffling to another nursing home for so-called therapy.
This made 5 transfers within five weeks and it was talking its toll on dad and our family. We had other serious issues to deal with as well. The nursing home conditions were not what we were told they would be. He was in a double room with one chair (which was moved for some reason) and a room-mate who mumbled all the time and kept the window open which upset my dad a great deal. My father was miserable and the “nursing home smell was awful.
With my heart overriding my head, I decided to bring my dad to my home and care for him. By this time he had contracted another serious bladder infection which required shots twice a day because dad’s lymphatic leukemia makes him unable to fight off infections. My daughter an I had to really fight to get him released to my home, with a hospice nurse giving thee morning shot, and my daughter, an RN giving the evening shot. It didn’t take long for me to realize that doing the right thing, certainly didn’t mean doing the simple thing.
By the time the shots were over, I was so exhausted that I often simply collapsed on the bed after picking up my teen son from his I.T. Internship with the school system. My daughters were good to help with food, and of course the RN daughter helped with shots, but the burden was mainly on me. My husband helped, but was often not at home. I am sure Hospice is tired of our calls, but we were often confused and left with conflicting directions from the nursing home’s medications, Hospices recommendations and trying to get my father to doctor appointments that he simply was not able to go to. By day 6, I was a wreck. A family meeting was called to see what more could be done to help me as the problems with my father being uncooperative and his short-term memory minimal.
This is where I am right now. If you have read this much of my blog, you are probably feeling a bit of the exhaustion that I feel. We still have no answers. The biopsies that might have told us a little more could not be done. Dad could come down with a serious infection tomorrow, or go for weeks, we don’t know.
My point in writing this long diatribe is two-fold. Number one, you are not superman (or woman)even when the conditions at nursing homes are not up to your standards, home care planning should be made with more care BEFORE the parent comes home.
Number two-make sure that the people who say they will help have a schedule of WHEN they will help and that they are committed to do it. In my cause the girls all work and/or have children under two. One daughter-in-law now had a sick newborn at home to care for-along with two older, active boys. The best of intentions may be hard to fulfill.
In closing, I commend all of the baby boomers like me, who are caring for parents, children and grandchildren. We deserve some kind of heroism medal, but that wouldn’t help either. Plan carefully and don’t let guilt rule your decisions, you are only human. As for me, I will just do the best I can and hope my help comes through.