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HELP Please Mom's not eating
meltruman14
Posted: Sunday, December 2, 2018 12:04 PM
Joined: 3/5/2017
Posts: 470


Hi everybody

My turn to ask for help if you please. Mom has started, for a few weeks now, avoiding just about everything that I put in front of her. She's gone through stages of crushing yogurt and fruit and such and now that's gone. I put things in front of her now that I know she really liked before this all started. Scrambled eggs and Chipped ham sandwiches, it's a Pittsburgh thing, baloney sandwiches and such, even chicken noodle soup and on. She just looks at it or eats a tiny bit and stops. She was taking a spoonful of applesauce today and raising it to her mouth and putting it right back down. She's not vocal enough with me to explain what's wrong. I don't know if it's a taste thing or a texture or what but she can swallow a small handful of medicine every morning with little difficulty, so I don't think it's swallowing yet. It seems like all she is really doing at this point is a very small amount of solid food and some liquids. I have a high potency liquid vitamin that I mix into juice and she is drinking that once or twice a day. After a while she can finish a Gatorade but she has an aversion to the chocolate 30 gram dink supplement which is just like chocolate milk which she loves or loved and now I can't get her to drink it. This is very important to get in her because it's basically a meal if she doesn't eat solids. She's looking pretty bad and moving worse do to lack of energy and caloric intake.

Any and all advice would/will be greatly appreciated as I am having a really hard time with this.

Thank you all, you wonderful folks.

As always...………………...Godspeed

Mel


MPSunshine
Posted: Sunday, December 2, 2018 12:15 PM
Joined: 5/21/2016
Posts: 1862


Hi Mel. My mom did this about 1.5 months before she died. It was her way of just being done with earthly life. And she was a big eater. We ruled out medical causes and then more and more symptoms cropped up; spine crumbling, a stroke, until she was released to hospice care at home and she died in her bed. Her doc recognized the symptoms right away. It was me that fought it tooth and nail: “How can this be happening so fast? I thought she was on the ten year plan!”
ruthmendez
Posted: Sunday, December 2, 2018 12:41 PM
Joined: 9/8/2017
Posts: 1615


Hello Mel.  Are you spoon feeding her yourself?  My father cannot eat on his own anymore, but will still eat solids.  He has to be spoon fed and he does have a great appetite.  As a matter of fact, most of his conversations has something to do with "comida" (food). He has always been an eater.  And, it's easier giving him his fluids now too, because I just put the coffee type of cup with open hole lid and make him drink it.  Otherwise, he won't do it himself.  Been like that since January.  Absolutely everything is done for him now.

Let us know what's going on.  I'm curious on what I'm gonna do when the next stage comes...

 

 


harshedbuzz
Posted: Sunday, December 2, 2018 1:46 PM
Joined: 3/6/2017
Posts: 1032


I'm sorry Mel.

We had this for a time with my dear aunt as she developed Alzheimer's in addition to her vascular dementia. At first she would forget what she was doing after a few bites; later she forgot how to get food from plate to mouth. Once it was there she was fine- especially if it was cake or a cookie. 

Her sister who oversaw her care, made sure she was at the MCF and then SNF for lunch to hand feed her which took the better part of an hour. On days my aunt couldn't make it, my cousin or someone hired to do this would step in. This worked for the most part for about 2 years- although sometimes for no reason we could detect our PWD would go on a hunger strike for a couple of days and then go back to eating.

At the very end, she did stop taking offered food about 3 weeks before she died. 


HB
MissHer
Posted: Sunday, December 2, 2018 1:57 PM
Joined: 11/13/2014
Posts: 1973


I'm so sorry. My mom did this twice within a year. This last time she refused to eat anything but would drink some ensure. She went to bed one night and was unresponsive the next day and passed on. We are thinking that she maybe had a stroke as she was prone to them. It's extremely difficult to let go but I couldn't keep her here. I never gave up though. Teepa Snow has a very good video on the subject and it helped me .  https://blog.thealzheimerssite.greatergood.com/letting-go/
terei
Posted: Sunday, December 2, 2018 3:11 PM
Joined: 5/16/2017
Posts: 127


My mom was clear with me:  she NEVER wanted to be fed.  If she did not eat herself, then she was ready to go.  I will honor that
NC caregiver
Posted: Sunday, December 2, 2018 3:14 PM
Joined: 2/7/2018
Posts: 660


I'm so sorry your Mom is not doing well.  There is a YouTube video where Teepa Snow shows using the hand over hand method.   Basically you help the first bite or two and then hopefully motor memory kicks in if it is a matter of her forgetting how to feed herself.   Mom has only had eating issues when she has a UTI or is dehydrated.   She will grudgingly eat Ritz crackers or a banana when she won't eat anything else .  I know stopping eating can be a sign of end stage, but there have been times when Mom is sick and stops eating or drinking and then goes back to normal once on antibiotics .
Iamnumberfour
Posted: Monday, December 3, 2018 7:40 AM
Joined: 2/29/2016
Posts: 1167


Hi Mel. So sorry to hear of this development. First things first: eliminate any physical cause for the poor eating, such as mouth sores, tooth pain, poorly fitting dentures, infection such as urinary tract infection, GI problem like impaction, dehydration with electrolyte imbalance, etc. Any time that there is a rapid change in behavior, UTI should always be considered. Have you taken her to her doctor?

Not eating can be a sign of acceleration in the primary illness of dementia. My mom, who despite having many of the signs of stage 7, could feed herself with some assistance until fairly recently, but now she needs to be fed. It is as if she doesn't recognize that the plate in front of her contains food and that food is something you eat. She has also lost the coordination to eat...although when I put a cookie in her hand the other day, she became very motivated.

Once you have ruled out treatable causes for her loss of appetite, focus on foods that are easy to eat and appealing. The sense of taste diminishes; foods that used to be appealing are not. Often sweets are something they still enjoy, as that taste sensation persists. Try ice cream, yogurt, pudding, applesauce with extra sugar, etc. No need to worry about a balanced diet. If she is having difficulty swallowing, you may need to crush her pills and use a thickening agent with liquids--discuss with the doctor. You may need to feed her, or at least get her started. The Teepa Snow video that NC mentioned is very helpful.

It can also be, as MPS wrote, a sign of approaching death. If that is the case, forcing foods and fluid will cause distress. I hadn't got the impression that she was that far along, but the disease is unpredictable. The physician can make a referral to hospice if the disease is accelerating its pace. Hospice services are not just for her, they are for you and the rest of the family as well and can be really helpful.

Keep us posted. And hang in there. You are a good son.


CessnaDM
Posted: Monday, December 3, 2018 6:42 PM
Joined: 5/30/2016
Posts: 554


Hi Mel!!Unfortunately, her dementia has progressed to her inability to eat. Thick liquids are good for her right now because she will get her nourishment. When she  does eat, please make sure she isn't pocketing the food in her cheeks.  Swallowing may be an issue also.  Contact her doctor and let them know she is not eating. Sending you prayers and good thoughts. Stay strong.
harshedbuzz
Posted: Tuesday, December 4, 2018 5:40 AM
Joined: 3/6/2017
Posts: 1032


terei wrote:
My mom was clear with me:  she NEVER wanted to be fed.  If she did not eat herself, then she was ready to go.  I will honor that

My aunt who was caregiver to her sister has had "no hand feeding under any circumstances" to her Advanced Directive. I'm her secondary agent and she calls me routinely to remind me.
TessC
Posted: Tuesday, December 4, 2018 11:26 AM
Joined: 4/1/2014
Posts: 4483


I've been hand feeding my mother for over 2 years now. As long as she will open her mouth for food and swallow-I will put food in her mouth. Some meals she refuses to open her mouth and I don't force it. In the last 2 months she has probably lost a pound a week. I know she is failing. I know she is dying, but I still want to do my best to provide her with warmth, comfort, water, food and mostly compassion and love.

 I give mother liquids (Ensure, juice and water) through a straw. I puree her foods and hand feed her and give her bed baths. The need to do this for a PWD is just another stage of Alz. Your mother may also go through all the stages before she dies. I've had to steel myself to this stage and not let what I see happening kill me. Like I have always said here-caring for my mother has been her gift to me-a way of teaching me to become a stronger person and to be more appreciative of life's many small blessings. I no longer need to go on a vacation to feel rejuvenated-just give me a rainbow over my house Good luck!


ruthmendez
Posted: Tuesday, December 4, 2018 11:41 AM
Joined: 9/8/2017
Posts: 1615


harshedbuzz wrote:
terei wrote:
My mom was clear with me:  she NEVER wanted to be fed.  If she did not eat herself, then she was ready to go.  I will honor that

My aunt who was caregiver to her sister has had "no hand feeding under any circumstances" to her Advanced Directive. I'm her secondary agent and she calls me routinely to remind me.

I didn't know there are Advanced Directives written this way.  My father is only 77, no other serious health concerns, I hand feed him, and he eats very happily. Even says "mmm" sometimes.  So, if he had an Advanced Directive written "no hand feeding" that would be really something to look at.

He even mentioned to me in 2015 that he didn't want me to take care of him.  But look, I'm still doing it....although I don't see it in any way a gift.  I guess I gotta start changing my perspective.  Yes there are moments....but I don't think I'll miss this when he's gone.  Too many years with mom's illnesses, now it's dad.  

Maybe, right after him, it's mine.



Jo C.
Posted: Tuesday, December 4, 2018 11:54 AM
Joined: 12/9/2011
Posts: 9118


Hello Mel, please do re-read "Iamnumberfour's" Post again.  It is absolutely imperative to rule out all physical causes for such a change before attributing it to dementia.

Our LOs have multiple body systems just like anyone else and anything can go awry in any of the systems from tooth/mouth/tongue issues with Thrush or irritation or a cavity, to food tasting horrible which can be caused by some medication.  UTIs, other infections, constipation and so many other issues including electrolyte disturbances can all be part of or complete causation for such a change, so please do get her seen by her doctor AND also do not let him/her automatically decide it is dementia without having assessed other very possible causes.
 

 She may also like soft finger foods at this point in time, or those nutrition based milkshakes; be careful of too cold or too hot.

 Let us know what is happening, we will be thinking of you.

 J. 


citydock2000
Posted: Tuesday, December 4, 2018 11:58 AM
Joined: 9/7/2017
Posts: 620


I agree with the previous post.  My stage 6 FIL had a bunch of behavioral and physical stuff going on and as a result wasn't eating much.  We thought he was declining and just kind of let it go, especially since it was coupled with a general decline in his cognition.  We were horrified when the doctor was like "he's starving, lost weight, you need to get him to eat"

We redoubled the efforts and he ate and gained weight.  Make sure you check w a doctor.


Pioneer woman
Posted: Thursday, December 6, 2018 6:59 PM
Joined: 12/28/2015
Posts: 49


My dad stopped eating and lost 17 lbs due to cardiac issues and depression and worsening of FTD and VD. He refused food. We found that Ensure Plus heated, served cold, served w/marshmallows as cocoa, handed to him during the night when he went to the bathroom, even when sitting on the toilet, upon wakening etc. kept him going until his appetite improved. A dietician made many suggestions like small portions. Offer different colored dishes, shapes, sizes, lots of added calories through butter, fats, etc.. time of day and sweet foods like puddings and finger foods. We are on an upswing now. Gaining weight back. But almost every meal is a struggle if you believe him when he says he is not hungry, or he just ate. We put it on his lap or his side table or hand it to him, and at least 70% of the time he eats. Have thrown a lot away though, too. Frustrating. VA gives us 3 Ensure a day. Those calories help. We add a packet of cocoa to it and sometimes egg nog. Super high calories and protein with added protein powder. His likes and dislikes change daily. No longer likes what he used to love ... nature of the disease.

I keep a log to see patterns - time of day, amount, mood, etc.

Hang in there.


meltruman14
Posted: Thursday, December 6, 2018 8:25 PM
Joined: 3/5/2017
Posts: 470


Hello everyone

Thank you all for your responses. I see a lot of old friends here and some new ones. A usual your responses are awesome and I expected nothing less. Many of your suggestions are already in place although many others are new to me and what I was looking for. I have a protein drink that I get at the local Sam's Club that's got 30 grams of protein and other goodies. The chocolate tastes great at least to everyone other than Mom and I have added extra chocolate syrup to try and make it more appealing. She's doing a little bit of ice cream with chocolate syrup and I have a high potency liquid vitamin that I mix up with juice and try to get her to drink that. It's hi or miss with that one and I can't blame her cause the amount of B vitamins in it makes it smell and taste absolutely horrible. I took a shot of it to see if the label saying tastes great was accurate, no way tastes like B12 dog sh*t. I buy her fruit cups and have a little success with those but not much and yes I throw out enough food to feed an army.

 

She isn't scheduled with her PCP till the second week of the New Year and the Geriatric Psychiatrist a couple days after. That's much too far away so I will have to work on changing that. She had blood work and an Echo a month or so ago and other than her glucose being a little high which is actually normal for her, the numbers were spot on. The Echo turned out great and other than a small issue with a ventricle the doc says she has the heart of a horse. Maybe I should try hay.

 

How about some more bad news...…….Saturday night just past my Granddaughter's father tried to rape her after forcing her to drink alcohol. My Little Bird is only 11 years old and that pig did all kinds of ugly despicable stuff to her and fled the police. He was picked up last night finally and charged with assault initially and will soon be charge with rape. Perhaps my parents are better off. Mom is out with Alzheimer's and Dad is two years gone this Christmas. I'm dying inside and fighting to keep what little mental health I have left intact and also my sobriety. If I can this Christmas will be four years. I'm proud to say that I drove past my old bar on the way home from Children's Hospital the other night after sitting with Little Bird, Averie Lynn is her name. A beautiful little girl and my pride and joy. I recognized lots of vehicles in the parking lot of the bar and would have had a drink waiting as soon as I walked in the door and I sure was thirsty. It would have been no trouble to cop some heroin either but thank God I just kept driving. It's a huge victory for me but seems to not mean anything when I think of the damage that this as*hole has caused my girls. If you're the praying type, please keep my girls in your prayers. My daughter's name is Jordan Merry.

 

Thank you so much and sorry not much humor this time

 

As always...……………...Godspeed

 

Mel


citydock2000
Posted: Thursday, December 6, 2018 9:00 PM
Joined: 9/7/2017
Posts: 620


Oh Mel. I'm so sorry. Proud of you for staying so strong . That is ALOT to carry.  I'm sure Jordan and Averie are both relying on you.  

I know you're at home w your mom alot  - do you ever check in on Reddit Stop drinking subreddit? Amazing support and daily check in https://www.reddit.com/r/stopdrinking/

 


Iamnumberfour
Posted: Friday, December 7, 2018 6:36 AM
Joined: 2/29/2016
Posts: 1167


OMG Mel. I am so sorry that your granddaughter was assaulted. Words fail me; what a despicable person that man is. Your unconditional love will no doubt be a rock that your daughter and granddaughter can lean on to get through this crisis. That you were able to maintain sobriety is amazing; I wish you the strength to continue to do so.

Re Mom's eating: it sounds as though you are on the right track in trying easy-to-eat foods and getting her appointment moved up. Most geriatricians are good about getting patients in for a sick visit quickly. If the vitamin drops are vile, why not ditch them for the time being? You have a war on your hands, you don't have to fight every battle. BTW chocolate Ensure and vanilla ice cream in the blender makes a tasty shake.

Keeping you and your daughter and granddaughter in my heart and wishing all of you strength, healing, and peace.


MPSunshine
Posted: Friday, December 7, 2018 8:06 AM
Joined: 5/21/2016
Posts: 1862


Oh, Mel, my heart is crying for your Little Bird.... and praying to hold your Sweet Children safe.... and praying for you too.... good for you just driving by..... oh so many challenges in this warped world we find ourselves. Thank God for people like you. Praying for Averie Lynn and Jordan Merry, that the rest of their lives be filled with peace, joy, and good decent and truly loving people around them to shelter them and nurture them and protect through the rest of their lives.
NC caregiver
Posted: Friday, December 7, 2018 9:52 AM
Joined: 2/7/2018
Posts: 660


You & your girls are in my prayers . Stay strong & sober.  We are here when you need to vent .
Sayra
Posted: Friday, December 7, 2018 10:46 AM
Joined: 8/10/2016
Posts: 1036


(((Averie Lynn,  Jordan Merry,  Mel)))
harshedbuzz
Posted: Friday, December 7, 2018 2:46 PM
Joined: 3/6/2017
Posts: 1032


I am so very sorry Mel. 

I will be praying for healing  for your dear little bird Averie Lynn and for strength as you and Jordan Merry support her through this. 

Strong work on being able to maintain sobriety. 

HB
MPSunshine
Posted: Saturday, December 8, 2018 1:25 PM
Joined: 5/21/2016
Posts: 1862


Hi, Mel, So, Prayers for your mom first that she may eat. LOVE HER.  Second for the Little Bird that she may feel secure, FOREVER. Third, for Averie Lynn and Jordan Merrie, as you have said are your Delights in need of protection.
meltruman14
Posted: Saturday, December 8, 2018 10:27 PM
Joined: 3/5/2017
Posts: 470


Hello again everybody

Yeah, I'm crushed and way out of my comfort zone that I never really had anyway but I think you all know what I mean. Thank you all for your prayers.

I want to tell you a little story to let you in on how beautiful my Little Bird is...Please bear with me as I will probably ramble and possibly go off subject.

It's starts just a little ways back when the leadership Dinner at the church came up where most of you know I am continuing my Dad's legacy at the food bank, he'll be gone 2 years on the 29th so mix that in with everything else. He served for over 20 years and I started going with him when he got sick, learning the ropes and we he could no longer make it, I took over his position and have since moved up into a leader role. By the way, we supplied 128 families with Thanksgiving Dinner this year...turkey and chicken and all the fixin's. Off track I know. So, my Director invited me to attend the Leadership Dinner and be honored for my service. Big deal  because few people from the food bank ever get honored. With my mental health issues I didn't want to go because I suffer from social withdraw and my daughter demanded that I go because she figured I needed it and deserved it. so I agreed. The morning of the dinner I went into a  complete panic attack from the stress and broke down. I messaged my Director that I couldn't make it and felt liked sh*t because I let her down which I never want to do because I respect her so much. Well she told me later that she didn't make it because of a migraine and she may have just told me that to make me feel better which it did.

After the despicable deed, I messaged her again just to let her know in case I had any issues at the food bank. So fast forward to Tuesday and the day that we distribute food. Every distribution day around 8:30 after everyone is mostly there, we gather in a circle, what my Director calls her "holy huddle" We hold hands and have announcements and pray for this day of service to God and community and for anyone that needs prayer. It started out with her introducing a gentleman that works for the big conglomerate in the Burgh. University of Pittsburgh Medical Center as a social worker and he was also a parole officer for Allegheny County where we are located. She goes on to say that he always has a knack for showing up when he is needed without being told. He spoke about his job with UPMC which is solely working with the homeless in the Burgh. He gets them off the street and into drug/alcohol treatment and counseling, gets them fed and clothed and supplied and even puts them into their own housing which he accepts donations for furnishings. He was needed there that day by ME and he spoke to me at length after the prayer circle and offered me his services. I turned around and gave him some brand new clothes that my Dad never had a chance to wear for his homeless folk. Needless to say he was thrilled...bear with me I'm almost finished. So, after his introduction my Director proceed to tell everyone that there was someone in the circle that needed to be recognized for outstanding service to the food bank and she said a whole lot of very nice things about me and at the end of that there was a round of applause which embarrassed me to no end. Then as an reward she came over and placed upon my head one of those silly things with the springs and Christmas trees on it. I'm sure you have seen them with antlers or big eyeballs or whatever. Silly to  no end but I needed it so I wore them the entire day and it helped me feel a little better. Okay, then she got serious and emotional and told everyone about what happened to Little Bird. She said her heart was so heavy that she had cried the whole night that I had messaged her about it. She had asked me earlier for my permission to speak about it for me and I agreed because I could have never gotten through it telling it myself. Way too emotional for me. Then she prayed for my family and that this man would fall to his knees and repent his sin and turn himself in to the police. I mean she PRAYED and some of you will know what I mean, the kind of prayer that sends shivers down your spine and you know without a doubt that God heard it. As an aside, this despicable person was found in a church and surrendered without incident and I would say that's about as close to the actual prayer as you can get.

Almost done and this is what I'm talking about. I saw Averie a day or so later and just making conversation with her, I told her about this gentleman and his work with the homeless. Now after her Grammy Bayer died of cancer and Averie was probably around 7, Little Bird did a fund raiser for children's cancer because she didn't want kids to have to go through what her Grammy did. She had T-shirts made up and even had a school event called "Wear a Hat to School Day" I thought she would be interested in this man's work and when I was done telling her in spite of what she has gone through would you like to guess what she said to me??

The first thing out of her mouth and I will quote her because I will never forget it and this is just how wonderful my Little Bird is. She said "Pappy, can I help, I'll make them duct tape shoes" Yeah, I started weeping too

As always...……………….Godspeed

And thanks for listening

Mel


Tink4495
Posted: Sunday, December 9, 2018 11:27 PM
Joined: 5/2/2014
Posts: 734


Mel, I am so sorry about what happened to your beautiful granddaughter. I hope the bastard rots in hell. I am so proud of you for staying strong and not stopping for that drink. Always remember "I can do all things through Christ who strengthens me". Sending prayers to you all.
D in law
Posted: Monday, December 10, 2018 9:58 AM
Joined: 4/24/2017
Posts: 347


Praying for your continued strength mel.

I'm about 5 hours from you so if you ever need anything -like me coming out there to kick some butt-- just let me know!


 
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