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Home Caregiver Woes
Dad has dementia. He has been living in Independent Living, with me coming in for about 3 hours a day. He was active and happy. Dad's balance seemed off, and he fell two times. Neither were major injuries, but one included a bump on the head. We took him to the neurologist, had a CT scan, and at the neurologist's suggestion, Dad did 6 weeks of physical therapy to help with is walking. I began looking for Assisted Living for him. I knew he didn't want to move, but I also knew it was time.
Two weeks ago, Dad took a serious late-night fall. Cut his head -- lots of blood, lots of confusion. He was rushed to the ER. We were there for 8 hours. He was in agonizing pain. He was so agitated (which had never been a problem before) and oh-so confused. I practically had to wrestle with him to keep him in the hospital bed. The end result -- no broken bones. No need for stitches. But they wanted to run another CT scan. Then they wanted to run another CT scan with contrast. I knew something was wrong.
Long and short of it, he has multiple brain metastases. Yep -- brain cancer. They wanted to admit him to do a brain tumor biopsy, radiation, and chemo. I said no. He's 85 years old with moderate dementia for heaven's sake! The doctor discharged us. I asked what to do about the pain. He said "give him tylenol." We were sent home.
I took him home, hired 24 hour caregivers from the retirement community's home health agency. They did okay. He needed a walker, but was still mobile with assistance, continent, and able to understand me. I contacted his 3 doctors and asked them to review his results from the ER. I asked "Is it time for hospice?" All three replied, yes, it is time for hospice. I signed up for hospice We were immediately accepted. Thank goodness-- real nurses!
Dad went downhill quickly and it became obvious he needed a higher level of care. Assisted Living was now out of the question. The original agency only offered "companions." He needed nurses. I hired a different agency, which boasted actual nurses and highly qualified staff. They came highly recommended. They took over, with hospice's guidance.
I tried to get Dad into skilled nursing, but none of the places would accept him until hospice could get his pain and agitation under control. Hospice was making constant changes in his meds -- take this, but if that doesn't work, take this and add that, and if once an hour doesn't work switch to every half hour, then try this, but stop that first, etc. It took quite a while to finally find a med combo that worked. He changed so much in 2 weeks. He's bedridden, delusional, has no idea who I am, incontinent, has seizures, and is oh-so confused. But everything settled into a predictable pattern for a few days. Now his pain is under control and I have requested to move him to skilled nursing. I'm waiting for an opening. It might happen tomorrow.
So Dad is still in his apartment, with 24 hour nurses, and a full hospice staff to help as needed. As soon as it can be arranged, he will be moved to skilled nursing. Sounds great, doesn't it?
Today, I got a call at 2pm. It was the home nurse agency. The 1:30pm nurse had not shown up. The nurse who was there had stayed, but she had a planned medical procedure scheduled and was already late. She was demanding to leave. The home nurse agency "scheduler" called me and asked if it would be all right for the nurse to leave, because another nurse was on her way from a nearby city and should be there in about 20 minutes.
I wanted to scream, Are you insane? Leave a bedridden, heavily medicated, incoherent and delusional dementia patient alone? Instead, I simply said "no, that is not all right. Under no circumstances is he to be left there alone."
She then asked if I could rush over and take over caregiving duties. I live 20 minutes away myself, so I told her that wouldn't help. Plus, I was waiting on a certified delivery and had to be there to sign for it. Also, I'm not a nurse. Dad's on all kinds of heavy pain killers, including morphine. I have no idea how to administer them.
She asked if I knew of anybody else? I said, no. I reiterated that he was not to be left alone for any reason.
I find out later, she called the director of the retirement community and asked if she could go over and take over caregiving duties for Dad. Of course, she refused. She's not a nurse. She doesn't work for them. She wasn't authorized by me. to do it. It was a liability issue. The scheduler is also a nurse, and her office is about 5 minutes from my Dad's apartment. The RC director angrily asked her why she didn't get off her butt and go herself?
End of the story? The replacement nurse didn't get there for almost 45 minutes. Imagine if he had been alone that long! The angry nurse who had now missed her planned medical procedure left immediately when the replacement nurse got there, so the replacement nurse had no explanation of meds, procedures, if he'd eaten, where the food was, where supplies like diapers and wipes were, etc. Of course, the meds were all written-down, but she didn't even know my Dad's name! (Thank goodness it was on the prescription bottle.) I can't imagine how upsetting this all was to Dad.
I sent a VERY angry letter to the head of the agency. I made some very serious demands for explanations, and how I needed to assured this would never happen again. I said that I expected to get an immediate contact about this.
So here's praying that an opening in skilled nursing is open tomorrow.
I will pray for you. How horrible of a situation. That agency responded so irresponsibly.
I know that care providers are supposed to be somewhat detached and after dealing with this with someone I love, I can only imagine what its like to do this with several people every day. You'd have to develop some kind of feelings for them, right? Apparently not.
Our parents/spouses/siblings/friends don't seem to hold much value to the medical profession. Just drug em stack em and wait for em to die. It's shameful.
I realize that's a broad brush and there are many, many devoted care providers but I've seen too many of the other kind lately. MAkes you wonder about the whole profession.
The lack of compassion is astounding.
I'm trying to focus on the few who truly do care.
A bad situation, for sure. To my mind, the irresponsibility comes in the agency with "skilled nurses" not having any kind of backup plan. Workers are late all the time, and call in sick all the time. Why haven't they planned for what to do in those situations? These may be life-or-death situations. Calling a relative and asking if they will take over the responsibility is just not a plan, it's abandonment.
Hope the SNF comes through.
Thank you, Ruthmendez.
I appreciate your kindness and concern.
I know that 99% of the ALZ members are kind and compassionate people, making this terrible journey together, and supporting one another. I will choose to focus on the positive right now. There is no room in my life for negativity right now.
Your fellow traveler,
Fortunately, the issue has been resolved. Dad was transferred to the local Hospice House early this morning. I spent the day with him there, and thanks to IV meds and constant care, he is very comfortable. He is completely non-verbal at this point, but he is no longer in pain.
A person can only stay at the Hospice House for 5 days. The doctor said she didn't know if Dad would pass at the Hospice House, or hang on a little longer -- but if he hangs on, they are committed to help me find an appropriate skilled nursing setting for him.
So now I just have to arrange to be at his old place so the rental company can come pick up the hospice equipment, call an estate agent to arrange the removal of Dad's furniture and personal affects.
Thanks for all the support. I truly appreciate it.
I'm so sorry. Deepest sympathies. His battle has ended and he is at peace.
May you find peace, too. God bless.
My deepest sympathies for your loss. You will probably find, as I did a few months after my Mom's death, that the anger and hostility subsides. Please make sure to thank all the compassionate providers (nurses included) who took care of your parent; a job that I couldn't even do on my own, even though I was a Registered Nurse. I often took out my frustrations and rages on strangers at the smallest of slights, either real or imagined, because my nerves had been frazzled. I even ended up yelling at the funeral directors and my cousin over arrangements and details. I lost a couple of close friends and a few of my cousins won't even speak to me anymore because of my bad behavior. I don't have any brothers or sisters, so I was REALLY alone. It's okay if this posting annoys you; I think it's important to reach out to you because I experienced it myself, and hope to help. Take care and cherish your support from family/friends/kind strangers.
Please accept my sympathy and a well done from me.
I found that death brought with it grief, overwhelming grief but also a sense of relief and great fatigue. Staying here with those of us in stage 8 was very helpful. I hope you will let us be supportive of you during this time.