I have a live in caregiver for my mom and dad in home. They both have dementia. My mom more so. She will be 91 in August. She, in the past 2 years, has had to be reminded to eat. Lately, even when reminded, she eats maybe a teaspoon of food or water. She's losing weight. We informed her dr. who suggested hospice. What will this hold for her future? Shall I leave her home?
How does hospice work?
Hospice provides EOL care, but also palliative care where the person may not be 'actively dying' but not eating, not able to walk, possibly is bed bound.
Hospice also provides medications for anxiety and pain. Whatever each patient needs---it can last days, weeks, months.
I would leave her home. Moving her to a NH would require her to be quarantined and you could not be with her at all. If she and dad are getting along well with the situation they're in--don't rock the boat.
Hospice is an absolute Godsend for EOL care. I hope I am not upsetting you by saying that it sounds like mom is entering the EOL stage. We had hospice for daddy in home and he was with family all through the last month of his life. The hospice SW was a wonderful resource for mother.
Ask mom's dr for a referral to a Hospice provider.
I agree wholeheartedly with Midkid58's answer as hard as it is to hear on the one hand yet informative on the other!
If you can leave them at home with your live-in caregiver and then add hospice to the mix, I think that would be great. It really is hard to put them in facilities not only at that age and stage they're in but, mostly because of the pandemic. So in my opinion they would be safer at home and you would be able to be with them. I can only do window visits with my mom and haven't been with her in person since February 28th.
That being said, I'm pretty much where you're at. My mom turned 95 on Valentine's Day. She has Alzheimer's related dementia. She lived in AL until April 22nd when she nearly died from severe dehydration and then contracted the COVID-19 virus. She was completely mobile and able to dress herself until then. Once she was hospitalized, the tests showed bi-lateral pneumonia and a severe UTI in addition to the rest. We had hospice for my dad back in 2004 when he was dying from Stage 4 Pancreatic Cancer so when she was released from the hospital and rehab facility in May, I had her evaluated by hospice to see if she qualified. Once they saw she was hardly eating or drinking, lost 20 pounds and was no longer able to walk, she qualified. I did not send her back to the AL facility where she nearly died and by God's mercy and grace we found a new facility that would accept her as long as she got a negative COVID test result. She is now in the memory care wing where she is receiving more care. I actually feel like the hospice nurse who sees her once a week along with the bathing team who come twice a week - they are my second set of "eyes". Since it's on the first floor, I was able to get her an apartment by the window so we could "see" each other. It has been such a rollercoaster ride that I have experienced "anticipatory grief" three times already. I do provide the facility with protein shakes and a V8 Energy + drink that comes in her favorite flavor Peach/Mango and contains one serving of fruits and one serving of vegetables. For the past five years I was providing Klondike Ice Cream Bars and Rice Pudding Cups because they were soft but, she is starting to no longer want those so I have stopped providing them.
Her doctor is giving you good advice in suggesting hospice. They are such a blessing and they provide equipment, depends if needed, fall mats (as my mom started falling regularly now that she is so weak,) social worker support for me, Chaplains/Pastors if that's wanted and you can contact them whenever you need to with questions or concerns about your loved ones. I would never make it without them! I wish you and your family the best in the days and months ahead. I sure hope you will provide an update if you can - take care!
There were several people in mom's nursing home who needed to be coached while they ate because they couldn't quite remember how to get the food to their mouths or were easily distracted and would stop eating or leave the table unless they were reminded to sit down and finish their meal. My own mother felt little hunger and showed no initiative to feed herself so I had to spoon feed her for several years.
Another common occurrence in late stage dementia is difficulty chewing and/or swallowing, sometimes thickened liquids and minced or pureed foods are the answer to that.
If the above doesn't apply then I agree that this can be a sign that the end is approaching and that forcing food is never the answer. Teepa Snow has a very good video about this that you may find helpful
https://www.youtube.com/watch?v=mNJxq4J5kYY