This is the toughest thing I have ever done. It was traumatic when I lost my son, and then my husband, but that was a one-time thing; does that sound terrible? I still grieve for them with every breath I take, but this on-going struggle with my mother’s well-going is just awful. My niece and her husband came for the weekend, so excited to see Memaw; Mom was totally out of it (she is taking a diuretic because she was retaining so much fluid) all weekend. My niece was just undone, but accepts that it might be the medication and hopes to get back soon, she loves her Memaw. I called the facility this afternoon, after I remembered the weekday nurse telling the doctor that if they give Mom a little more Ativan she calms down. I requested the weekend nurse do that, then called back later and she said Mom was no longer calling out “please, please help me”. One thing about this facility, they listen to the family and go as far as they are allowed, to help. My niece was so impressed by the fact that it smells good in the memory care area. There is no “nursing home” odor.
Months ago someone posted a special advance directive for health care for dementia? I thought I had saved it but can’t find it. If you have it, can you post it again?
I have a friend with a father deep into Alz. Dad has pneumonia caused from aspirating food due to swallowing issues. His frail condition has caused the pnenomia to become life-threatening. She has flown back east to help, and Dad is scheduled to have a feeding tube inserted tomorrow. I know she and her sisters mean well, but that’s not what most of us want.
In a regular advance directive, you can choose not to have a feeding tube. I don’t see much reason for a dementia advanced directive which, in this particular case, is an agreement between the doctor and the patient. What we really need are more conversations and understanding of wishes among family members. Remember, once you have cognitive impairment, advanced directive forms cannot be completed.
The decision making around a feeding tube often falls to health care proxies or family members. Meetings with Drs who can review patient’s overall health status and what their best estimate of what to expect is invaluable. Hearing the likely course of events without a feeding tube and how comfort is managed can be reassuring.
When my father was 90 with advanced memory loss and difficulty swallowing due to “mechanical” issues, aspiration and pneumonia risk became challenges. A feeding tube was not an option; he would not have wanted it and Drs discouraged it. He was nearing the end of life and once an elder can’t swallow, considering what quality of life you are asking them to fight for is relevant.
Every situation is different; having a thorough discussion of the context of the symptoms is critical, as is understanding what it means to the patient to be experiencing any given procedure or treatment. Also helpful to families can be outcome studies; knowing what some statistics are for patients with advanced dementia who treat a pneumonia, have a feeding tube, undergo a particular surgery, etc. may be relevant.
I listened to the radio interview, I really appreciated the way she talked about the UTIs and that they have decided not to intervene next time there is a UTI, I seriously think we fight too hard to save a body that is done and when the mind is gone, it’s just pointless, IMHO. I have not yet had a conversation with a person who expressed a wish to be kept alive at all costs even when they have dementia. I would not want that.
Dementia can phase in and out, in our experience. It’s not like a switch is suddenly thrown and the person is 100% demented. They can be totally lucid and and then the next minute forget they spoke with or saw you.
They can have an Rx and take it awhile and then forget they gave it and how and when to take it. They can forget what year it is and yet remember all their loved ones.
It’s tough when their bodies are still pretty strong but they can’t remember things for longer than 5-10 minutes, including where the light switch is or that the faucet should be turned off when they’re done with the water.
My mother was admitted to the hospital today with gastric bleeding. There are a lot more things wrong, and a massive infection somewhere. They aren’t giving us much hope, but I am okay if God calls her home. She has been suffering since she fell and broke her arm.
The CT scan and x-rays showed that she is amazingly healthy. Irony.
The POA I have for my mother is me or my brother; we don’t have to work together. Which is a total blessing, since he has advanced Alzheimer’s now. And my mother’s dementia was too great to change anything when he was diagnosed.
Yes, it is a good thing to gave more than one person you trust designated medical and durable POA because people can be unavailable or become incompetent or unable or unwilling to act.
@mykidsgranny hugs. hopes for the best outcome. I hated to think of my mom going to the hospital and getting poked and prodded. gastric bleeding sounds awful, too.
Take care of yourself, eat and drink some if you can.
Sending strength to all those who need it right now…
Have a question for the group…I recently moved my dad to a Memory Care unit of the Assisted Living facility that he has been at for the last two years. The level of care is concerning to me as what they are supposed to do is often not happening - soiled sheets, bathrooms not cleaned after poop accidents, poop on the couch, not helping with dressing and not getting him showers for over a week at a time etc. I have complained quietly and then reached my breaking point… They are now reporting that he is refusing to get dressed and refusing showers…
Do I accept the not getting dressed? I never have a problem with him…if he isn’t dressed I pick out clothes and hand them to him as well as assist him in getting dressed…if he says anything I nonchalantly say - well it’s late, time to get dressed.
The showers are another story, with the number of incontinence issues and the fact that he has a catheter with a history of UTI’s he needs to be fairly clean…
Over all I have never been pleased with the level of care and consistency…but it has never been a health serious safety risk so I have kept him where he is…