LO Continues to Lose Weight

TrishaG

I had posted earlier about when it is time to get Hospice involved. I have been busy getting my LO set up with home health three times a week, and Palliative care. My concern is still that my LO will not eat food. This weekend she aspirated twice on soup and coke. I also noticed that she is not snoring at night. This is a significant change because she always snores VERY loud. I am wondering if her muscles in her neck are not strong and causing some of  her weight loss. I encourage her to eat and try different things, but she refuses. I am thinking it might be time for AL so they can help her more.  My LO is currently weighing in at 86 pounds. I have talked with her doctor and they said she needs AL and that is probably due to her dementia. I always feel like I can’t get support from Medical providers and maybe I am struggling more with the lack of support from them. I am concerned about my LO and feel like I keep hitting roadblocks. 

Has anyone experienced this before?  If you have do you have any advice?

towhee

TrishaG, glad to hear from you again. You have done great to set up home health and get palliative care in. 

As to whether weakness can cause problems eating, yes. My LO was in rehab after a broken hip and between the anesthesia remnants and weakness from being in bed it exhausted her to to chew and swallow more than a few times. They put her on pureed foods. Also, what you are describing with choking on liquids is common in the later stages of dementia. When this happens the usual standard of care is to either have a speech therapist come out and evaluate or get a swallow test done (usually at a hospital, medicare pays) They will often recommend that a thickener be added to liquids which will reduce the chance of choking. However, you need a professional to recommend this as it could not be helpful.

You do seem to be having problems with the quality of medical care. Sometimes we just have to communicate strongly and clearly what we need. Be specific with the info you give doctors and don't let them off the hook. 

Trisha, you really need to contact medical care first thing in the morning. Don't wait. If you are set up with palliative care and they have a doctor available, call them. Or call your LOs doctor, or take your LO to urgent care or the ER. Tell your medical person that your mom is frequently choking on liquids, that she has lost xnumber of pounds in x number of days and that she is unsteady on her feet, and that you want her evaluated, said evaluation to include a swallow test and/or a speech therapist. And don't take no for an answer. Using thickeners, if they are recommended, is a form of comfort care and you want it on record that you have done everything you can.

Depending on what the results of the tests show, you might want to rethink AL, at least temporarily. I don't know of one that will handle eating problems and special diets to this extent. You either need really good home nursing care every day or a stay at a rehab or possibly memory care.

Wish you the best-

MN Chickadee

You could request a swallow study. These are done by speech therapists and can sometimes help a family figure out a better diet for a while. Liquids can be very challenging in the later stages, many swallow studies indicate the need for thickened liquids which leads to thickening all beverages and feeding blended smoothies, and purees. Mixed textures are the hardest, so a broth soup with chunks of vegetables or meat would be the worst. 

There can also just be an element of digestive changes. My mother was a reasonably good eater until almost the end but still didn't keep weight on, it was as though her body wasn't processing the nutrients normally. The brain interacts with every single thing our bodies do including the digestive system. A PWD also forgets how to swallow eventually and aspiration is a risk.  There does come a time when there is no counter acting what is going on, no diet or approach is going to fix it. It's hard to accept but inevitable. You might do a consult for hospice now and not just palliative care. If she is 86 pounds she would likely qualify on the weight loss alone. Hospice would help make sure the days she has remaining are as comfortable as possible and help you trouble shoot challenges. 

harshedbuzz

Trisha-

The sputtering/choking (aspiration is when the food/liquid actually gets past the epiglottis and down the windpipe into the lungs) on liquids is considered an emergency. A hair-on-fire emergency. You need to ask her doctor for a referral for a swallow study or feeding evaluation. Things can go south very quickly if she's aspirating rather than just choking/sputtering. I knew nothing of the risks when dad developed swallowing issues; I learned the hard way. The SLP who diagnosed dad's swallowing problems did so less than 8 hours before he died. The DON called the SLP only the evening before for a next day appointment when one of dad's regular aides noticed him sputtering.

Until she is seen, I would make sure she is sitting upright to eat or drink. I would not offer liquids with food as they can get past a sluggish epiglottis faster than it can react to protect her airway. She may do better with thickened liquids like milkshakes. Dad's SLP prohibited soup and cereal with milk as some of the most dangerous foods for a person with swallowing issues. Also, she shouldn't have straws or sports bottles. 

Swallowing issues are generally seen in the later stages of dementia. For my dad. eating and digestion were impacted earlier than what most here describe. The SLP was shocked by how poor his swallowing was in contrast to how conversational he was. He flirted mightily with her and told me all about a visit he'd had from my sister earlier. He lost a lot of weight in the weeks leading to his death. He was eating fairly well and mom or I brought him a calorie dense treat daily but foods went right through him. 

It really seems like your mom needs 24/7 care. Unless she can afford that in-home and you are willing to oversee a team of caregivers filling in when there are no-shows, that means a facility. It sounds as if she is way passed the level of care she'd get in a hospitality-model AL. They won't necessarily collect her for meals or encourage her to eat and they will likely only check-in with her once or twice a day. In dad's MCF, aides do an hourly well check during the day and every 2 hours at night. 

I can appreciate the frustration with feeling alone in this, but the reality is that doctors don't have much to offer for dementia patients or their families. The aides and DON at dad's MCF were much more helpful to our family.

HB