GeriTech

In Search of Technology that Improves Geriatric Care

What A Caregiver Said Was Hard About Hospice

[November is National Family Caregivers Month. In this post, I share the eye-opening letter I received from a Geriatrics for Caregivers reader who has cared for his mother — now 100 years old — in his own home for 3 years. She is now on hospice. 


The writer has given me permission to share this letter, noting that his mother, a former teacher, would have been glad to know people were learning from her story. Please note: all emphasis below was added by me.]

Howdy Dr. Leslie –
Mom has progressed quite a ways down the road and actually I am quite amazed that she is still with us. I think that, somewhere in the back of her head, she had the 100th birthday in her mind as a goal. She has deteriorated quite a bit in the last 10 days since her birthday.

Two months ago we placed mom on the local hospice program (we have one, run by the hospital) and we were just recertified for another 60 days. You may remember the difficulties our hospital was having and the possibility that it might actually close due to some incredibly bad CEO’s and bad management. Fortunately, they have located a fellow who used to be the CEO here about 15 years ago and he has gone on to form his own hospital management company and they have several hospitals located around the country. Things appear to be on a new track.

Now to your question – the thing that has probably frustrated me the most in caring for my mother are two:

  1. the lack of resources and available training to function as a caregiver and
  2. the continuing lack of resources that I have received from our hospice program. 

As mom progressed, I had located several dementia units that I felt would be a good match and found that unfortunately 3 of them have discontinued their dementia care units due to rising liability issues. The remaining ones didn’t make me feel comfortable.

Since mom has been unable to walk back in February, I have had one night off and I know it is beginning to affect me. I have found caregivers (including my sister when she is able to come up) but none will stay overnight and none will do any lifting. Even the hospice program offers volunteer caregivers but only for about a two hour time period and they do not do lifting. We tell caregivers to watch out for their health, but then don’t provide the resources to accomplish that.

A local nursing home now offers respite care and our hospital has once again started accepting Medicare and Medicaid patients for respite care up to 5 days. (Prior to this, the other CEO refused to accept anyone except self pay for respite care).

Much of what hospice offered I didn’t need: harp player, chaplain, social worker, respite volunteer (although I have utilized her 3 times when I haven’t had a choice). What I have taken advantage of is a personal care individual who washes mom’s hair and trims/cleans her fingernails as my eyesight made this difficult), a physical therapist to see if mom could improve her ability to stand on her own as an assistance to me when I was changing her and of course, the nurse. All of them, with the exception of the physical therapist seemed to come with their own agenda of what they wanted for mom’s care – despite my stating and restating what I wanted done.

The PT was cut after the first 60 days. Hospice offered things such as pull-ups, latex gloves and a pharmacy program from somewhere in Pennsylvania – all of which I have taken care of already. I try to maintain a routine for mom’s sake and they seemed to want to constantly change the routine both with their actions and constantly changing scheduling of visits. I had also thought that the hospice would provide more help in securing respite care and possible assisted living assistance such as help with requirements and paperwork, but found I knew more than they did. 
They just recently received a renewal of their gold star accreditation. The hospice nurse tried to change some of mom’s medication and ordered new ones despite the fact that her primary care doctor had just recently reviewed mom’s medication and was satisfied with what she was taking. The nurse even tried to convince him to prescribe morphine (just to have on hand in case . . . ) which he refused to do. Her hospice doctor even tried to override the primary care doctor on the morphine but eventually backed off. Both the hospice, hospital and clinic are under the same company.

The head nurse and I have had multiple discussions about their program, but I’m still not comfortable with it.

I have so far decided to keep the hospice for one main reason – I think it will make it easier to get mom into the hospital’s respite care if I should get sick or need help due to an accident in a hurry.

It was my feeling that the health care system should be of assistance to me and yet I have found them to unable to do so and in a few cases, an actual obstacle. I understand that some of this may be due to being in a low income rural area, but I have spoken with others who have experienced similar problems with the health care system and hospice programs even in larger cities.

Hope that helps a little. The good thing is that it has pushed me towards trying to make things better for other families once my commitment with mom is completed. 

[A RAND study recently valued the care provided by family caregivers to the elderly at $522 billion per year. This letter shows us what some of that care actually entails. This Thanksgiving, don’t forget to thank the family caregivers you encounter. They are doing amazing work and we don’t thank them — and support them — nearly enough.]

Reader Interactions

Comments

  1. bryan flake says

    My mom has recently been diagnosed with cancer. We are all struggling with this diagnosis. I'm trying to keep it together the best that I can. We'd really appreciate a hospice care place to consult with about my mom's situation.