Due to a major stroke, my Mom cannot eat or drink properly. The stroke has also made her dementia worse. I'm wondering what others have experienced with a feeding tube in a parent with some dementia plus GERD. Her MD told me she will need to permanently stay in skilled nursing due to the medical requirements associated with a feeding tube.
http://www.choosingwisely.org/patient-resources/feeding-tubes-for-people-with-alzheimers/
My dad is now in severe advanced dementia and no longer will accept food other than liquids. We are trying out best to get high protein shakes in him as he continues to lose weight. At this point, we feel he's not only giving up, but his advanced stage of dementia gives him no desire to eat.
We have since enrolled him in Hospice as I just don't feel like I can make all these decisions on my own anymore. While the Director of Nursing suggested an IV for him in his room in order to give him more nutrition; Hospice was against it..reason being that if he's taking in enough fluids along with many protein shakes per day; his body is using it to keep going and burning it off immediately. Whether giving him fluids in an IV or nutrients in a feeding tube, it can offset his body's slowing down process and could actually send him into cardiac arrest.
I'd love to do anything and everything to keep my dad here with us for as long as possible, but after talking with Hospice nurses that are experienced with this sort of thing..when it's his time, he'll go.
it's so tough to have to come to this realization, as modern medicine can many times keep out loved ones with us for a longer period of time..even if it's just a matter of weeks. What the hardest thing to realize is..what is their quality of life?
I've spent much time with my dad when he was mobile and before his dementia diagnosis. I spend a lot of time with him now that he's in the advanced stages also. He has a hard time communicating with me and tries soo very hard; yet rather than pushing him to talk to me, I just talk to him and tell him how much I love him; talk to him about old memories, etc.
Today while doing just that, while talking about old times and the memories we've made together, he grabbed my hand and held it tight while I smiled and laughed for the both of us. I'll continue to do this daily as there are so many memories to share with him until he's gone from this world and in a better place with my mom.
He soo misses her and it's been almost 12 years. I told him that when God is ready for him..I'm sure Mom will come and get him. However..he soo wants to stay in this world with me as we're so very close and he doesn't want me to be sad when he leaves...thus he keeps keeping on. I've told him that it's okay to go, but he just shakes his head no.
I'll soo miss him when he finally decides to go..it's so hard to see him decline day by day..:(
It started when they made her walk within hours after her clean femur break was repaired with a couple of screws. It broke into 4 pieces and the hospital didn't notice for 2 weeks. They made her walk on it again and again, and no one reported any problems. Only after I pulled down the sheet in front of the doctor to show him her swollen legs. Next they placed a rod in her femur, and for 2.5 months they were leaving food trays out of her reach, and leaving her to fend for herself with bad arthritis she couldn't even hold the utensils.
Now she's recovering at home, gaining weight and strength, and learning to swallow and eat all over again. Prior to her fall she was active, independent and we were planning a trip to Aruba for her 81st bday. Medical advice is based on statistical numbers, not the unique individuals we are. They are quick to make you a number on a page. Do what is best for your situation.
Also, just having a GT does not usually mean you can't be at home - anybody can learn to do tube feeds - there are facility rules though about who can do it and what they can accept. A lot of skilled nursing facilities are set up to look and feel more like assisted living these days. One other important thing is to have a good dysphagia eval, usually with speech therapist sometimes OTs do it, so you know what is safe to take orally (if anything) just as a quality of life issue. If they are OK with foods but not liquids, consider Frazier protocol too.
When a feeding tube was recommended for my husband and I researched it, I didn't find much in the way of evidence that it has any benefits for elderly persons in general and especially for dementia patients. We opted not to have it.
How old is your mother? What would the alternative be? If she doesn't get a feeding tube, where will she live? How will she eat? Would she be eligible for hospice care?
My brother had a feeding tube while he was recovering from throat cancer. That, in my opinion, is a very appropriate use of that technology. There was a good chance he would improve and not require permanent use. He had no cognitive issues and was not at risk of pulling it out or needing restraint. He did recover, is cancer-free, and is eating his wife's good cooking.
I think your mother's situation is very different. Please, do the research for yourself, regarding feeding tubes in elderly persons with dementia.
I'm so sorry that you are having to go through this painful dilemma.
If there are no advanced directives against feeding tubes (which, in this case would likely fall into extreme measures) then you'll probably have to follow through with the skilled nursing care. Pam has the background on this, so read her answer.
If this were me or someone I loved, I'd opt for hospice care, but then I don't know the full story for your situation.
This is a supreme example of getting down in writing the wishes of the individual under differing circumstances before these things happen.
Talk things through with the doctor and no matter what your decision is ask for palliative care for your mom. Palliative care is comfort care but can still be used with feeding tubes and other measures that keep the body alive.
Please keep us posted on how you are doing,
Carol
Since you have no advanced directives that say "no feeding tube", the staff will feed her as directed by the MD. With GERD, it is very possible she will regurgitate and aspirate some of the feeding material. She may not be able to tell that to the nurses. This leads to aspiration pneumonia and death.