physical changes as dementia progresses and scary moment

*Ollie*

I'm curious to know what are common physical changes that happen to PWD.   My 82 year old mom has moderate/late moderate dementia but was in good physical health until recently.  I'm noticing she barely has an appetite anymore and eats very little.  She seems to have a harder time chewing and swallowing.  Because of this I am moving toward smoothies and soft foods.  She is also sleeping more during the day.    

Also, a very odd and scary thing happened last night.  My mom was reaching for her soup and then suddenly slumped.  I jumped up and went behind her thinking she was choking and needed help.  It was like she was frozen for a moment.  Then, she "unfroze" asked if she was dreaming or if this was real and was happy to see us.  No apparent stroke symptoms from what we could tell.  She went right back to eating her dinner and the rest of the night was "normal".  Could this be a focal onset seizure?    She's ok today as well.  

We are in the process of having her assessed to go to memory care and it is taking SO long.  I feel very stressed because I feel like she needs to be in the hands of medically trained professionals at this point.  We are doing the best we can but this is next level care.   

Ed1937

I don't know if that could be a focal onset seizure, but the first thing that came to mind was a mini stroke (TIA). They typically last for no more than a few minutes, but could be a warning that a stroke could be in the future.

"I'm noticing she barely has an appetite anymore and eats very little.  She seems to have a harder time chewing and swallowing. " Could she be further along in progression than you think? I could be wrong, but that sounds like more than moderate to me.      

*Ollie*

Ed1937 - Our first thought was a mini-stroke but she wasn't dizzy or anything and did not have typical stroke side effects.     Are the symptoms of a mini-stroke different than other types?

It's so hard to tell if her lack of appetite is because of pain (recovering from a UTI and has sciatica)  or if she's in a later stage than we think.   One thing that is for sure is that her swallowing seems to be more compromised which worries us.  That seems like a clue she has declined more than we were thinking.  

She's definitely worse but I guess a part of me is hoping that it's due to not feeling well.   We'll know soon enough!

harshedbuzz

Ollie-

That sounds like a difficult thing to witness. PWD do sometimes have TIAs; my dad's imaging had a couple areas his neurologist pointed out as such. And seizures are possible as well as the disease damages the brain.

Feeding issues are common. If you have any concerns, please ask her doctor to order a swallow study or feeding evaluation.

Appetite does seem to wane in the later stages of the disease. Sometimes this is related to a change in preferred foods (dad and auntie rarely passed up a soft, sweet treat but former favorites went untouched) can be compensated for by offering calorie dense foods like milk shakes or smoothies. My aunt's intake of food was also related to her struggling to process visual information and manipulate cutlery. Finger foods helped a lot but the last couple years she was hand-fed. 

Feeding safely can be a challenge as the disease progresses. There seems to be 2 pieces to the chewing/swallowing troubles. One common thing that sometimes occurs is that the PWD forgets to chew fully/swallow and may need verbal prompts to make sure they do. Sometimes mechanically processed or pureed food helps with this.

But the other piece is the physical aspects of swallowing and that's where things can get dangerous. The brain is the boss of everything else and in the later stages digestion can be impacted. In my dad's case, his epiglottis became "sluggish" and didn't close off in time to prevent food, liquid, saliva from slipping down into his lungs causing aspiration pneumonia. Most folks who will suffer swallowing issues first start by spluttering on liquids. Thickening liquids can help with this. 

HB

SusanB-dil

Hi Ollie - MIL has had tia issues. Yes, they can present as different than a more typical stroke, of which she has had 2. 

Agree with HB to get a swallow assessment.  Also, could there be any dental issue?

*Ollie*

HB - It was so scary to see.  We feel challenged managing the non-physical aspects of dementia and now that my mom's physical health is declining, we feel overwhelmed.  We feel like we can't leave the house for barely any time now (she lives with us).   Her doctor put an urgent request for a palliative care nurse to come by and hopefully that will help educate us enough that we feel safe caring for her for now.

Thank you for breaking down the 2 pieces of chewing/swallowing troubles.  We are doing shakes/smoothies and will continue to feed her some of her favorite meals with lots of coaching.  Honestly we sometimes don't have time for this because she eats sooooo slowly and we can't sit with her for an hour to make sure she is eating safely.   Smoothies and shakes will have to do for the majority of her meals.  I put some added nutrition in there to beef up the quality.

There are so many dimensions to the ways dementia affects people.   

Susan -  My mom recently had dental care so I think she is ok in that way but that's something to keep in mind.   I hope the palliative care nurse will do a swallow assessment.  New territory for us.    Did your MIL have an MRI to determine that she had a stroke?   My mom's doctor asked if we wanted to investigate this further and I'm no sure what to do.   I'm not sure my mom could stay still for the MRI.    While I'm curious, I don't want to have my curiosity be the driving force.  If it would be helpful for her then I'm more likely to say yes.  

SusanB-dil

MIL has alz and vascular dementia, so tia's not uncommon, and her doc has said a major stroke may be imminent. (Vascular, years ago, was the old 'hardening-of-arteries' diagnosis, for any who may recall that.)  She has had an MRI, but several years ago. That gave us the vascular diagnosis. And other tests have confirmed alz. The 2 strokes she had didn't need MRI. It was the typical stroke symptoms - of slurred speech and 'word salad', one side 'droop', extreme sleepiness, and about complete weakness on her right side (I think the right - both times it was the same side). Amazingly enough, the symptoms cleared, but left her with more cognitive decline. Her doc (neurologist) said that in her case, the stroke symptoms cleared better than expected like they did, even with her diagnosis, because of the cocktail of meds she was already on. (includes cholesterol meds, thinner, etc) After both strokes, she slept more than usual for a couple days. The TIA episodes are less defined, but sleepiness is a main characteristic. She will not just 'nod' off, but really be completely out. Between these 'nod-offs' (for lack of better description), she is a little 'off', understanding less than usual, and will get a very blank/cloudy look in her eyes. She is more tired than usual for a day or two, and after that, there is always another cognitive decline of one thing or another, although not quite as bad as the strokes.

She had the MRI a few years ago. I am not sure she would be up to it nowadays. About 1 year ago, she winced while eating, so asked her if something was hurting, and she said yes. Turns out there was a cavity. She did ok at the dentist, thankfully. He was good with her, and was able to check all her teeth. That's why I had thought of any dental issues.

Ed1937

Ollie, yes TIAs can be no more than trouble with speech. They could be a warning about a possible stroke in the future, but many people have TIAs, and never have a stroke. 

About the MRI: If you don't think she could hold still while they do the imaging, you might want to consider not having it done. There comes a time with dementia when many different types of tests would not be warranted, even if the doctor tells you it is necessary. The end result with dementia is fatal, and in some cases a different kind of ending might be preferable. Last summer my wife passed from a gastrointestinal bleed. She was probably late stage 6, and she did not have to go through stage 7. She passed peacefully, and although it is still very painful for me, I'm thankful she was taken early. I know it sounds harsh, but I'm sure it was easier for her to go that way.

With dementia, many times there are hard choices to make, and there often is no right or wrong when making decisions. You just make a decision, and hope for the best.

mommyandme (m&m)

Maybe a hospice evaluation would be helpful, especially with this new decline.  Depending on where the MC is located, if it’s close to where she’s living now, the same team will transfer care to her new residence.  They could be a great support especially while you are waiting. 

Sorry for these newer symptoms, hope you can get some answers either way.  

*Ollie*

My mom's doctor did not recommend that we get an MRI but did say that it was an option.  At first I said yes, for course! Then when she asked if I thought my mom could handle that procedure I realized she couldn't and am going to pass.    Unless there was some useful information we would glean from it, it doesn't seem worth the trouble.

We had an assisted living facility picked out that we felt good about but they felt like it was no longer appropriate for my mom, which we agree with so back to square one.  Now we are waiting for the memory care place  to send out a nurse for an assessment.  Not sure if this is typical but it is taking awhile.   I'm hoping this is not an indicator of how the facility is in general and instead due to most places being short staffed.  In the meantime I am visiting another memory care place just in case.

The struggle is real!

Jo C.

Hello Ollie, I am very sorry for all that is happening and can well understand the deep concern and stress that you are feeling.

From what you described, it does sound as though your mother had a transient ischemic attack, (TIA).  These TIAs can be very small and very short or they can be longer.  They will usually resolve quickly.  Sometimes it is no more than a quick "wink" out, and then recovery.  Other times  they may be a bit harsher and longer even affecting movement of limbs and speech, but as a TIA, it will usually resolve within 24 hours.

The idea of an MRI does not sound doable and what would one actually do with the information gleaned from the test result which may or may not confirm a TIA.  My Loved One (LO) had several MRIs regarding dementia, and they never showed anything remarkable despite all the symptoms.

As for the swallow exam; the RN from Palliative Care will  not be able to fully do a swallow exam.  Your physician can order a swallow exam; this is how it is usually done: The doctor writes an order for the exam:

A Speech Therapist is the one who usually conducts the test. The patient is taken to an outpatient radiology setting which can be in a hospital or in a free standing radiology center.

Nothing touches the patient. The patient sits upright on a guerney.  There will be a fluroscopy machine present.  It does NOT touch the patient or make any noise. The therapist will feed the patient bits of different foods: perhaps  applesauce, bits of crackers, a bit of liquid, etc. When this is done the flouroscope displays the mouth, the tongue, the chewing dynamic, the throat action, the swallowing, and the Therapist can then see where the difficulty in swallowing actually is. With that knowledge, the therapist can then prescribe the steps to be taken as well as the  types of foods and liquids that will be safest.  Sometimes, depending on a patients ability to cooperate, throat exercises can be prescribed which may make swallowing a bit easier.   I have seen the swallow exam done with my own LO, and it was amazing to watch the process with the fluoroscope.

It would be good to have a swallow test done prior to going to Memory Care so the facility will have correct knowledge about what types of food and drinks are safe and whether or not the patient will need a thickener in the liquids she drinks.  Having the actual knowledge from a swallow test can be helpul in prevening aspiration pneumonia.

You are doing a very good job of care and being your mother's advocate under very trying circumstances; your mother is blessed to have such a loving family.

Let us know how it is going and how you are doing, we will be thinking of you.

J.

*Ollie*

Thank you all for chiming in.   We are set up to start palliative care on Monday and I believe they will be looking at the swallowing issue.   I'm wondering if hospice is more appropriate at this point but hopefully the person who comes can tell us.  It's kind of frustrating how slow these things are moving.  I feel like we need help RIGHT NOW.

My mom continues to decline and it's my husband and I who are watching over her.   Taking care of many of her other needs is one thing but dealing with the physical breakdown of her body is another.  We don't feel it's safe to leave her alone at all anymore even though I don't know what we can do if something happens - besides call 911.  

We decided to keep her at home as her caregiver thinks she will pass before April due to her loss of weight, lack of appetite and increase in sleep and confusion.   Our goal is to keep her safe and comfortable at this point.   This is not how I thought this was going to go.  I thought we would transition her to memory care and then I would be able to relinquish the role of caregiver and enjoy her as a daughter.  Life seemingly has other plans.   

Jo C.

Hello again Ollie; from what you have written, it appears that you are making the very best plan of loving care for your mother as she approaches the end of her life.    Your explanation regarding the circumstances and expected outcome by April lends light to the situation.

In all probability, Palliative professionals will advise that Hospice is the best approach under the circumstances. This will also be a bit broader in its ability to assist and any necessary equipment such as hospital bed, patient lifts, special guerney chair, etc. will be provided at no cost to the family.  A bath aide will be sent two to three days a week to appropriately provide hygiene care; you will have your assigned RN, Social Worker, Case Manager, Chaplain if you so wish, and 24 hour availability of a Hospice RN should there be a contact need.  In Hospice, you will be given a special supply of different meds for different issues that may arise. Also in Hospice, there is no need to call 911 as you mention.   It is all about keeping the patient as comfortable as possible under the circumstances and also very much about supporting the family.

If you have time and are up to it, let us know how you are and how you are doing; we will certainly be thinking of you.

With warm thoughts being sent your way from one daughter to another,

J.

*Ollie*

Thank you so much for your post, Jo.

I felt like I was doing all the "right-ish" things until  I talked to my brother who I wrote about in a different post.  Now I'm second guessing everything.

I can not wait for palliative care to come in and have eyes on my mom.  It will be so helpful.  Didn't know they will help out with showering, which has become quite the ordeal.   I get my bathing suit on and jump right in with her!  

This forum is a life-line for me as I know no one else going through this and the ever changing landscape of this disease makes it hard to know what to do.

I appreciate everyone here; those who share their stories,  those who read, those who comment.