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Having to spoon feed Mom
Phooey2018
Posted: Thursday, March 14, 2019 11:30 AM
Joined: 8/12/2018
Posts: 7


Has anyone experienced spoon feeding a LO in late stage ALZ? The past 2 weeks Mom will not eat meals. She doesn't seem to be able to process the whole eating process, i.e., spoon to mouth. 

She has no problem with us spoon feeding her..

She is 85 and losing weight..

What's a poor boy to do?


SelEtPoivre
Posted: Thursday, March 14, 2019 12:01 PM
Joined: 3/8/2018
Posts: 703


My mom is heading in this direction. She loses interest in food, but will allow me to coax her into eating and spoon feeding

If you’re doing this at home, I’d get some input from a dietitian how to properly spoon feed to prevent choking or aspiration 


TessC
Posted: Thursday, March 14, 2019 1:03 PM
Joined: 4/1/2014
Posts: 4744


I have been spoon feeding my mother for years-first soft, chopped up food-and now pureed foods.  I was able to keep her weight up for many months but the past 5-6 months she has lost a lot of weight because she won't eat well for me. But as long as my mother will open her mouth and swallow food-I will keep feeding her. 

 Like your mother-my mother is in the late stages and some people may not think I'm doing my mother any favors by feeding her-but I don't want her to die because I'm not feeding her. She'll have to stop accepting food on her own.


Pioneer woman
Posted: Friday, March 15, 2019 4:46 PM
Joined: 12/28/2015
Posts: 58


My mother is able to suck on a straw and that helps with shakes and Ensure Plus meal replacements. I also spoon feed soft fruit, spagettios, puddings made with Boost, cheesecake and jello made with fruit juice. She rejects most food choices. I keep looking for new things that she likes.
Phooey2018
Posted: Saturday, March 16, 2019 11:20 AM
Joined: 8/12/2018
Posts: 7


TessC wrote:

I have been spoon feeding my mother for years-first soft, chopped up food-and now pureed foods.  I was able to keep her weight up for many months but the past 5-6 months she has lost a lot of weight because she won't eat well for me. But as long as my mother will open her mouth and swallow food-I will keep feeding her. 

 Like your mother-my mother is in the late stages and some people may not think I'm doing my mother any favors by feeding her-but I don't want her to die because I'm not feeding her. She'll have to stop accepting food on her own.

thank you TessC. Mom is in God's hands. Always has been.  He is the only one we have to answer to.

Until the moment He stops working thru her, to accept our help, we will also continue to provide nourishment.Peace be with you + yours


romiha
Posted: Saturday, March 16, 2019 3:27 PM
Joined: 12/21/2014
Posts: 486


Phooey2018 wrote:

Has anyone experienced spoon feeding a LO in late stage ALZ? The past 2 weeks Mom will not eat meals. She doesn't seem to be able to process the whole eating process, i.e., spoon to mouth. 

She has no problem with us spoon feeding her..

She is 85 and losing weight..

What's a poor boy to do?

Late in seeing your post - is this a "sudden" change in behavior?  When my mom gets a UTI, she "all of a sudden" can't process eating, either - it's like she doesn't remember how to chew, swallow, etc.

For convenience' sake, I've been spoon feeding my mom soft foods (tender meat, noodles, mashed potatoes, steamed veggies, rice, etc.) for a long time now.  It's just easier and quicker.  For the most part, I know she can still go through the motions - but her attention span is so short that she forgets what she is doing.  If I'm not paying 100% attention, some of her food goes into her cup, or in a pile on the placemat next to the plate, or she'll eat the napkin, etc.   So now I keep her plate on my placemat and I feed her myself.  She can eat dessert without any problems though and man, can she eat it up FAST!  lol.

But, if this is a sudden change in behavior, please check with the doctor.    


Bentley6
Posted: Sunday, March 17, 2019 8:01 PM
Joined: 9/19/2016
Posts: 78


My mom is 92 and has been in memory care since June.  First I started noticing that she was turning the spoon sideways and her food was all over her.  Now she just stares at her food and does not know what to do.  She will eat but only when fed.  I keep encouraging her to eat in her own.  She eats ice cream well with spoon, but folk foods a little difficult for her.

I was not sure if this was caused because they were over medicating her because she was so sleepy and seemed to only want to sleep.  


EllerySir
Posted: Monday, March 18, 2019 11:59 PM
Joined: 3/29/2013
Posts: 1


My wife has FTD, very sudden onset, late stage.

It began in 2006 when she was age 53.

 She was assessed as  functioning at institutional level.

Christy is an accomplished person, known and adored by the community.

She is still physically healthy and active but little cognition.

She is in there, but no longer comprehends this world, and we are slowly learning hers.

Christy is compared to a 2 year old with autism. She cannot communicate or understand. She requires full assist with every ADL, often by 2 attendants, due to aggression and combativeness.

I have cared for Christy at home, providing care myself and paying for care since 2006.

 I had to take early retirement at age 62, in 2013,  to provide the 24/7 she needs.

I had a great job and prime insurance, including long term care benefits, but there was no avenue to reimburse or pay for home care. She would have to be in a facility.
 The insurance was useless and we ran out of money.

We enrolled her in a Medicaid LTC program in 2015 and discovered that Medicaid is a generous program as legislated by our much berated Congress.

My career had been in contract compliance and policy interpretation across states.
I know how to interpret statutes and regulations

I learned about the SS Act, Title XIX and the waivers that are supposed to offer the
Medicaid program developed for DD to the other populations such as Elderly/Disabled.

I have a new respect for our government.

Medicaid deficiencies are the fault of the state administrations.

It took 4 years to convince the state to follow Medicaid guidelines and now Medicaid pays family members to provide Christy's  care 24/7  or  168 hours per week.

Home care provided by family is much cheaper for the state program and guaranteed best care. 

Christy's family members sacrificed  skilled jobs and homes in other states to be underpaid, overworked attendants.


I  spoon feed Christy, frequently over the day, often fighting gravity and motion as she is pacing, head down.

Christy  is stooped over from failed Alzheimer's Rx in 2014.  

It is known that FTD responds adversely to ALZ meds but FTD was not yet diagnosed


UTI's had been a problem, a continuous low grade for years. No meds would help.

 Ciproflaxin cured overnight in April 2015


Christy has not had even a hint of UTI since the Cipro cure due to:

She is always commando in a long  cotton T-shirt. Long skirt added for visitors.

She sleeps with a washable bed pad under a cotton sheet.
(Polyester, even blends  irritates and promotes bacteria)

When she does sit, it is on a folded cotton sheet over a washable bed pad.

She stands and shuffles many hours, but we frequently hold her and walk the room for longer strides.
That is good for atrophy and the digestive process.


Christy is toileted every 2 hours.

Her toilet has a computerized bidet seat to wash her underside.

We use terry washcloths to dry her underside.

That  also allows checking for constipation.

Christy is hydrated constantly with a turkey baster. (She forgot how to sip)

We monitor her urine with a 10 function reagent test strip and adjust diet accordingly.

It is a bit of work, but less than dealing with the delirium and agitation caused by a UTI.

It is also less costly than a hospital stay and subsequent health problems.

https://www.alzheimers.org.uk/get-support/daily-living/urinary-tract-infections-utis-dementia

Christy lost most cognition, but retained  the aversion to soiling herself.

We are just now realizing and recognizing that facial expression, vocals sounds, and motion indicate her need. 

"Birdie" open mouth for hungry.

pursed lips for thirsty,

crossed ankles and giggles for pee.

groan, scowl,  and a new one today, upper lip sneer for BM.

She refuses to eat or drink if toilet need is urgent.

We have not had a toilet incident in over a year, 

Christy has seizures.

Shotgunned medical cannabis stops seizures,  instantly and calms for hours.

An ER doctor offered a medication for the 'hellish' aggression that would
"Make the family's life easier but would shorten hers"

Edibles administered 6 hours apart calms the chaos in her brain for the whole day and causes alertness and improved cognition.  No side effects. 
It has taken 3 years to learn type and dose but we have it now, and it is consistent.

A hospice chided us for monitoring her UTI's because they would not cure it.
They would, "give her a comfort medicine and let the infection take her life naturally"

 We cancelled hospice.

We have mostly great days.

They only vary when she constipated, same as us anyone.

We have learned how to recognize and how to relieve her, within the day.

Christy is now 67. Her condition and abilities have not changed since 2013.

Warm lemon honey water before breakfast

Banana with morning medication and  yogurt

Breakfast is oatmeal and shredded apple in an oatmeal cooker.

2 egg omelet w  onion spinach, shredded potato, avacado,

We quip, that she will outlive us.
 



















Daisylost
Posted: Tuesday, March 19, 2019 2:08 AM
Joined: 5/12/2018
Posts: 54


Hi Phooey, sad to hear. Please get labs to diagnose what may be up, if anything.  Those darn UTI's in the elderly do a ton of damage to the whole capacity...  AND, speaking from experience, we just had a bout of Low Sodium. Threw mom completely OFF.   Thought she had a stroke.. it disabled all abilities.. Get a f/u with doc I say.  

Dear EllerySir..  Bless you and how you were raised. There is a saying in Spanish 'No te naces, te haces.'  Loosely translated: It's not what you were born into, it is what you become.  

I love your quip.   And I love the omelette. 

I have cared for mom for near two years now and although she is late onset Alz, she is doing pretty good still but I have long heard from my siblings loud and strong how wrong I am in caring for mom, "just put her in a home already" and now some from neices and nephews that I am using my mother and doing her bad by not placing her.  The comments hurt though I am aware that they are not important.  

My mom is happy and content and I seem to be the only one sharing those wonderful moments of smiles and far off comments about the past and I feel good.  

It feels really good to hear of others doing good by LO's, not because you have to, but because you choose to.  

xx D


MPSunshine
Posted: Tuesday, March 19, 2019 6:19 AM
Joined: 5/21/2016
Posts: 1934


I was okay with spoon feeding. Dietician also gave me some tips on waking up the mouth, feeding from different sides of the mouth, varying the texture, coldness and sweetness of food. Also those washable  terrycloth adult bibs are awesome.
 
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