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Hi. My mom was diagnosed with FTD in November of ‘21 and has been in a nursing home since then. Initially, she only showed symptoms when she had a UTI. Unfortunately, her dementia symptoms are now present without evidence of a UTI. She increasingly refuses meds, visits from facility doctors, to get out of bed, etc. She has a complex medical history, which includes an implanted pump in her abdomen that must be refilled twice a year and replaced every 7 yrs, or she could suffer severe, even life-threatening withdrawal symptoms. I’ve been trying to get her to see the pump replacement dr. since November. She agrees to these appointments until the day of, when she refuses to get out of bed and go to the appt. Our only option was to go to court to obtain legal guardianship, so that she HAD to go the recent pump refill appt. Long story short…EMS took her and the pump was refilled, but it was a nightmare, even with the legal papers in order.
I’ve now made another appt. with the dr. who will replace the pump ASAP. I’m dreading it…especially the transportation aspect of it. Mom, in all likelihood, will refuse to go and get angry, sometimes belligerent and aggressive. Her mobility is limited and it’s difficult to get her into a regular vehicle. The private transportation company won’t have to take her if she refuses to go. Last time, the nursing home had ME call 911. I was told by EMS that I should’ve called the non-emergency number and request a transfer. Has anyone else had to deal with transportation issues and uncooperative dementia patients? I would appreciate any advice. Thank you for your time.

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Just leave her alone. To what end are you trying to prolong her life? Her FTD will only get worse not better. If she doesn't want medical assistance then let her be.
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Just some info in looking this pump up. I found it maybe a
Programmable intrathecal pump for the management of chronic pain.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4200017/
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I would think a doctor could prescribe something to calm her. And 911 is correct, they don't do non-emergencies. Medicare and probably insurance companies do not pay for transporting people usually. I think you need something from a doctor saying this is the only way the person can get to a doctor. But even then, 911 is not called.

It would be nice knowing the age of your Mom. I too got to the point where there would be no more Rehab or hospitalizations for my Mom who was in the final stages of Dementia when she went to the NH. I was told the doctor recommended a swallow test which meant sending her to a Hospital. By this time she had been in bed for a week. Always wondered why he did not recommend Hospice. I told the Nurse No, no more sticking and prodding. Mom had got to the point she didn't want to be touched. I asked her to call in Hospice.

You really need to weigh the pros and cons.
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How about…you don't? Sounds like Hospice is called for, and even if not, nontreatment is an option. Sometimes, medical science keeps us alive long after we're meant to go. Personally, it's my biggest fear--outliving my brain.

I'm so sorry your mom and you are in this position. I wish I had more to offer.
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The nursing home is who is supposed to deal with the medical care of the residents and the transportation of those residents to whatever outside medical appointments they may have. Your mother is not in an assisted living facility. She's in a nursing home.
That makes her a patient. Not a resident. Don't let the nursing home intimidate you again by making you arrange the transportation.
I had homecare clients who needed to be transported by ambulance to doctor's appointments. The ambulance transport was arranged by the doctor's offices. Talk to your mother's doctor's offices about transporting her.
I say this with all respect to you and your family. If your mother is at a point in her life where she's living in a nursing home, out of it with dementia, is refusing meds and getting out of bed more and more, maybe it's time to just let her live in peace. To make her as comfortable as possible to live out whatever time she has left.
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JoAnn29 Apr 2023
My daughter worked in NHs for 20 years. My daughter said that the NH is considered a persons home and as such, they are residents with rights. The right not to be restrained, the right to make even bad decisions, the right to refuse meds, ect.
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You do not indicate what the pump is, what it is for so I do not know if what I am going to suggest is possible.

Short of medicating MIL so that she can be taken to the appointments I would suggest this...
And this may be difficult to read...
At some point medical procedures become more of a burden then a blessing.
With dementia it is often almost impossible to get someone to cooperate. To get them to comply medicating is often the only way to do it. This can create more problems. The quality of life is lost, it is lost as the dementia worsens and with other medical conditions there is none. There is an option to not follow through with some treatments.
Symptoms and pain can be managed.
I think at this point from what you have described I would discontinue further treatments.
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What is the pump for? What illness/condition does your Mom have that requires it?

How old is she?

Is she on any meds to address her agitation/mood? If not, why not?
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Agreed with Funky on every point. The last thing on earth I wanted for either parent was to prolong their suffering or mom's dementia which was horrible. Memory Care Assisted Living had ALL the medical people come in to see her on site, or there wouldnt have been any excruciating appointments to take her to kicking and screaming. The goal here is to keep mom comfy and relaxed and hospice can help facilitate that goal.

Best of luck
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Is it absolutely necessary that this pump be replaced and that she have to go outside the facility for these doctors appointments? I only ask because those of us that have dealt with a loved one with dementia know first hand that there is no happy ending with this horrific disease, so why prolong the inevitable?
Are you wanting this pump to be replaced so you can continue to watch the mom you know and love deteriorate and suffer from the horrible disease of dementia?
Wouldn't you rather she just remain calm and comfortable and live out her final days the way she prefers, even if it's just in her bed? The life expectancy with FTD is only 6-8 years, and I'm guessing your mom showed signs several years prior to her diagnosis in 2021, so for her to have this pump replaced to what....live 3 more years in misery?
None of us want to lose out loved ones to death, but we're all going to die and those with dementia often suffer quite a bit needlessly because of family members that don't want to let go.
Perhaps instead it may be time to bring hospice on board and just let your mom live out her days on her terms and not yours.
Just some food for thought for you from someone who lost a spouse from dementia.
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