Hello! I am seeking any guidance or similar experiences for reassurance. Thank you in advance for taking time out to read this post
My mom is only 68 but has been dealing with dementia for years now (originally diagnosed with PPA but now likely to have progressed to frontotemporal). After a really rocky start moving into an MC unit at AL near me (lots of changes involved - new state, first time living in a facility, during COVID restrictions, loss of English language, etc) she was admitted into a psych facility to balance out her medication. It was a short stay (~10 days) that required a negative COVID test for admission for each patient and a negative test upon discharge. When it was time for discharge, mom tested positive to everyone's surprise, since she had 0 symptoms. Since her AL facility was also dealing with an outbreak at the same time, they allowed her to come back but required that she quarantine for 10 days upon return. This is obviously really difficult for dementia patients in general and since she had no symptoms and was physically quite active, she was out and about, seemingly asymptomatic and easily agitated when the staff tried to redirect her back to her room. Eventually the virus did get to her, unfortunately, and on around day 5, she fainted in her room and was sent to the ER to rule out any head trauma after her fall (she's never fallen before). Well, they ruled out head trauma but ended up admitting her with COVID pneumonia instead! She was hospitalized for 10 days, with each day bringing a different challenge, but luckily she never required a ventilator and ended up showing mild symptoms. Once they considered her "COVID recovered", they recommended short-term rehab. I reluctantly agreed but now she's been in rehab for nearly 2 months!
It was just October when she was too active for the AL to control her, now she is essentially wheelchair confined, barely speaking, but most concerning is that she has recently started pocketing food. ST doesn't seem to think that she has physical trouble/pain when swallowing though. I've been working with the staff daily to try different remedies to encourage her to eat/drink but nothing seems to be working. A good day for us is when she drinks a total of 8oz of juice and 3 full spoonfuls of food after 1hr of - that is simply not enough! She has lost 10lbs since admission but only 1lb over the last week. She's a healthy weight currently for someone her age/height, but if she continues to require a full time pureed diet she will require moving into a skilled nursing facility or worse... Currently she's on an IV for hydration and dealing with a UTI (also on a liquid IV antibiotic for that).
Could this be COVID side effects? Or does this sound like natural progression of her dementia? It just seems like she has regressed SO quickly if the latter. I am hopeful for some answers to encourage her to eat again but really at a loss... Any advice/suggestions would be much appreciated!
The facility finally let me inside (after a rapid test & PPE) on Saturday. It was so nice to be in the same room as her, to hold her hand. She fell asleep quickly, but seemed to have some recognition in her eyes.
I realize the last days (weeks if we’re lucky — her birthday is coming up this month!) are among us now so please everyone who was following this thread, keep my sweet mom in your thoughts. I have signed a DNR and want her to go out with comfort & dignity intact. I just want more time to keep holding her hand...
Reading your other comments, if it were me in this situation with my mother, I'd move her back into AL with hospice care, which my father had at the end of his journey. Providing they'll let you in to visit with her physically, and not via 'window' visits or any of that nonsense. In her condition, and with you renting a 1 bedroom unit, how can you do it? It would be literally impossible, truthfully, because you're not qualified to care for an ill patient 24/7. In AL, there will be caregivers and nurses available and assistance from hospice along with a hospital bed, supplies, meals, etc. And, if she DOES improve, all the better. Then hospice can be released and she can get back to everyday life.
Wishing you the best of luck with a difficult situation and sending you a prayer for peace and acceptance, whatever the outcome.
Why are you “so scared and worried”? Her eventual death is inevitable, and nothing to be scared about. Perhaps it would be good to focus on your own acceptance of the way that things work out, whether or not they are what we want. If you have family overseas, can they help you with understanding of the way end-of-life is done in your mother’s culture? Lots of love, Margaret
There's nothing wrong with someone hoping for a miracle and sometimes that in and of itself can help the person cope instead of falling into a deep depression. Also, Alinachka may think that 68 years old isn't really that old like many others who are dealing with loved ones in their 80's and 90's although, there are some exceptions. She even stated in her first sentence that she was looking for reassurance.
As for her feeling "scared and worried" that's neither right or wrong. She came on to this forum as a new member and expressed a vulnerable part of herself regarding the situation she is trying to deal with to the best of her ability and facing frustrations like many of the rest of us.
Some people are better at handling and accepting death more than others and she should be allowed to come to that place on her terms and in her own time.
Since it seems like you've tried so many things without too much success, is it possible your mom is actually having problems swallowing?
Can you have them test her for "dysphagia" (i.e. problem swallowing) - it can be done bedside and at least you could rule that out for sure.
An update on my mom's condition currently - after being taken off of the fluid IV & antibiotics for the UTI she developed there, she is eating/drinking much better and even using her hands now! These is very much baby steps and the facility is still pressuring me to make the next decisions ASAP, but I remain hopeful. They did test her for dysphagia and originally told me that's what she had, but I've watched her swallowing no problem (on facetime with the facility during meals). Things just change daily and it's so exhausting...
After a very mild Covid bout my ex 95 year old MIL went from nursing home to hospital with a stroke. They wanted to put her on a feeding tube which the hospital was pushing because she wasnt eating. We refused it because those things can do more harm than good. Eventually they released her back to the NH on hospice care. She was losing weight and depressed and hallucianatng - and NH was not hopeful she would pull through. She slowly began eating again (over months), was taken off hospice care, and with the help of anti-depressants - is now doing very well. Every person is different.
Back to your Mom, how about milk shakes, smoothies, and ice cream? Gatorade? Seniors love sweets. I had a friend who's mom had ALZ and that's all she would eat for months. Try it!
This post probably isn't too helpful but I really wish you the best.
She can stay in her current facility (which also offers long-term skilled nursing) on hospice but they won't allow me in, or she can go back to her AL on hospice, and allegedly they would allow me in for end of life. I would prefer to be with her and be able to hold her again but I am also so fearful about doing something wrong or not being able to catch warning signs or notice her vitals dipping or anything like that if it's just me. This is so hard!
I've been recommending sweets like milk shakes, ice cream, creamy Ensure, etc. but yeah, she's still pocketing the food. They started her on an appetite stimulant today and she also held that liquid in her mouth for 30 minutes before spitting it out. She was just eating solids and "healthy" then took this sharp turn for the worst so quickly!
Honestly, hearing inspiring stories about others recovering is helpful, even if just momentarily.
She then tested virus free for about 2 months and was released from quarantine, and we had some lovely outdoor visits.
At the end of November she nice again had the same early symptoms as in her first case, and was once again both formally diagnosed by test, symptomatic, and quarantined.
She has now been released from quarantine and has returned to her own room.
Her case appears to be an unusual one, to be sure, but clearly ALL the ins and outs of this horrifying condition are not fully available yet, even to those who are actively researching it.
My LO seems to be doing OK on the eating program she’s being offered as of now, but of course everything I get is second or third hand report.
Taking it day by day.....
She is given nutritional support drinks 4 times/day, and has been drinking them.
I’m to the point where I think Covid just doesn’t care what you say about it; it will do whatever it wants.
She is 92, and wanted NO extraordinary medical interventions, and I’d never consider a feeding tube.
I have nothing but sympathy for you AND for her, alinachka123. As far as I’m concerned, there are NO GOOD ANSWERS. We who are caregiving have to make terrible choices and hope that they’ll work out.
Hope you can take some peace in the fact that your decisions are made with love.
I am sorry you are going through this.
She was in the hospital for a would that went septic, and she's been on and off antibiotics since September. I suspect the antibiotics have something to do with her lack of appetite, too, because she was eating less before the time in the hospital.
I've put her on hospice care because I'm not putting her through this again. She got back to her nursing home on Saturday, and on Sunday ate a decent amount for the first time. The nursing home staff knew she wouldn't touch pureed food, so they gave her regular food that was chopped up very small. Today, though, they said she didn't eat anything.
See if your mom would at least drink Ensure. They did get one of those down my mother today. The hospice nurse said fluids are more important than food, and frankly, she's not burning a lot of calories anyway.
See if she'd sip one of those shakes to get some nutrients in her as well as water. Also ask her if she can tarte anything. Covid causes a loss of smell and taste for some people, so she may not be tempted to eat because of that.
I now have to decide between a feeding tube or hospice by next week, knowing that she will not be able to return to AL given her new mechanical diet needs. I live alone in a 1BR apartment but am strongly considering in-home hospice care (I can sleep on the couch for as long as necessary) but am so scared/worried. Is your mom's NH allowing you to visit or be with her now that she's on hospice? This facility will not allow it.
I went through a similar situation with my mom when COVID was still a fairly new virus and there was still so much unknown about it.
My mom is 95 with Alzheimer's and lived in an ALF since 2015. In April I had her sent to ER because she was near death from severe dehydration and had contracted COVID. Upon further testing, she also had bi-lateral pneumonia and a severe UTI. She was in the hospital for 4 days where they gave her IV fluids for the dehydration and IV antibiotics for the UTI. She was then released to a rehab facility because she was so weak she was no longer able to walk under her own power.
Once at rehab, her O2 levels dropped to the low 70's and she had to wear the oxygen tubing in her nose until it got back into the mid to upper 90's. She wasn't eating or drinking much. Since March she went from 145 to 114 lbs. For fluids, I took to the rehab the V8 Energy Plus drinks that came in small cans and a variety of flavors, her favorite ice cream bars because that's all she would eat and some protein shakes for people with high blood sugar.
When her 3 weeks were up, we moved her to a new facility into their MC wing and brought hospice services on. I still brought what I had given her at rehab but hospice supplied "Ensure" protein shakes which had a lot more protein and calories than the ones I supplied. After several months, she began to eat a little more on her own and she had gained 10 pounds weighing 124 and she was taken off hospice Dec. 18th.
So that would be my suggestion (especially if your mom isn't eating very much in the way of solid foods) is to give her the "Ensure" which you can get at Walmart or probably membership clubs like Costco where they would be the cheapest otherwise you can get them pretty much anywhere. I had them give her the chocolate flavor as that seemed to taste the best but, they do have a few other flavors as well.
I hope you will find something to help your mom - they just aren't going to eat big, full meals anymore. Elderly people in general often lose their appetite due to losing their sense of taste and smell so add to that those who have real health issues, it becomes difficult to get them to eat what we're used to seeing them eat in their earlier years.
I already bring her Ensure and that's one of the few things she swallows! She likes the strawberry kind but we can also try chocolate. I will try the V8 juices as well!
When she was taken off of hospice, has she continued to maintain her diet? Is she eating solids again or pureed food only? Did you keep her in the same facility post hospice or move her elsewhere?
Thank you again for sharing your story!