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Becky45 Asked June 2022

Does a person experiencing early onset Alzheimer's typically stop eating before they stop walking?

Eight days ago I put my husband in hospital for medicine re-evaulation as he had started to become aggressive. Following discharge he was then to go to a nursing home. He was still able to walk (but slower) and talk. He loved to eat ice cream and honey buns but now is having difficulty eating. He began to eat slowly and everything needed to be soft and sweet. I was also begining to need to help him with a spoon. I could not visit him because of COVID and I have not been able to talk to a Dr yet.


Nurses now say He has stopped eating. He has not eaten any thing but Boost shakes to take pills but the facility ran out of Boost beverages three days ago. Now they tell me he can't swallow. They put ice cream in his month and it just runs out. He is not swallowing so they are not giving him any thing to drink. I don't understand how he changed so fast. I figured he would go to NH for at least 6 months to a year. I do know he was in stage 6. Anyone else ever have LO stop eating while still mobile? I will be able to talk to Dr or someone tomorrow hopefullly.

Becky45 Jun 2022
Thank you for everyone's help. My husband died June 18th. Hospice arranged for 5 days of Respec at NH they got him on 17th at 11:30am from home took him to NH. I told him good by, go to sleep. He had Morphin for pain finely. NH called 11:50 am. 18th. He passed. I am happy he is no longer in pain but also sad he is not with me. I am glad he was able to spend the week with me before he died. Prayers to all who are going through this disease
He is in Jehovah gods memory and Jesus will bring him back in the near future

Becky45 Jun 2022
Thanks for the input.
On 8th hospital called and said his insurance would cover hospice but he no longer was qualified for hospital stay. They brought him home next day (10th)in ambulance, hospice set up bed ect. Said they would have aid come Monday -friday. My husband could no longer walk,or get up. Now he acts like he is in pain all day. (his legs) want put them down strait. he has been awake all night. Hospice was suppose to come yesterday also they were to order something for pain. No one yet. A social worker from Hospice is suppose to come today at 11am. Any input on leg situation?
We do have a NH working on referral from Hospice. Pray we get him moved.

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JSunny Jun 2022
My husband passed away December 16, 2021 from early onset alzheimer's , he was only in Memory care for 3 months, he also became aggressive with staff, I found out with hospice that they were not able to give him his meds because he stopped eating and drinking anything. He lasted 16 days once he stopped eating and drinking but was able to still walk till about that last couple of days , he lost over 100 pounds , I also was unable to see him because of COVID , I know I am running on and on but once I was let back into nursing home he only lived about 10 days and I was shocked at how skinny he was, I think he just had , had enough and just wanted to let go. I miss him so much he was only 62 at passing, I took care of him for 8 years. hang in there it's a awful disease and to watch someone you love so much go through this.

Lifesabitch Jun 2022
Sense of taste goes first. Everything tastes bland like cardboard to them. I wouldn't want to eat either. The taste of sweetness is last to go. Sugar up/sweeten things to encourage eating. Unless your loved ones a diabetic. Then use safe sweet things approved for diabetes.

gladimhere Jun 2022
Don't ever try to force feed someone with dementia! They stop eating often because their organs have started to shut down. Feeding them could easily cause unnecessary pain.since the organs are not functioning.

Shanindo Jun 2022
Oops I forgot to mention-I have called the Alzheimer’s association 800 number quite a few times. They had some good suggestions for me, and most importantly-they really listen and have made me feel like they understood and made me feel like I wasn’t alone. I called a lot of times at 3 or 4 am when I couldn’t sleep because I was so worried about my mom and I felt so badly that I couldn’t care for her on my own. They had great suggestions for help with my frustrations with the facility. They are just a great resource overall.

Shanindo Jun 2022
When my mom first went in to memory care she could walk without any trouble and she actually ate quite a lot. She is really picky with food and I lived with her for a year and a half and catered to her tastes in food. But soon after transitioning to memory care, she stopped eating very much and lost a lot of weight. This caused her to have a few falls, she was pretty weak I think from not eating enough, and she had a cold for a while. I was really worried that she was actually hungry but if they brought her food, she was confused and didn’t seem to know what she was supposed to do with it. She still has the ability to swallow, so it wasn’t that. I know how you must feel, I thought about it night and day. When I was comfortable in my own home enjoying my own breakfast or dinner, I kept thinking about my mom being hungry and homesick. Tremendous guilt and pain. But as time went on she adjusted to a lot of things. I visited her today she ate a whole happy meal and an apple pie. What I found was helpful was to buy her groceries, things I know she liked. But I bought the big boxes of ensure. I think they had said the same thing at my moms place, they ran out or something, which was very frustrating. That’s the one thing they shouldn’t run out of in a care facility-ensure is the great equalizer! It’s universally enjoyed by everyone in the facility, no matter what they are there for!! Although I have been very frustrated with communication-well a lot of issues really-I know that when your husband goes in to care you can request a care plan meeting. This will enable you discuss the issues with eating and any solutions they might have such as bringing groceries. I brought tons of pudding and instant mashed potato single serving, oatmeal, that kinda thing. Make sure you write his name on absolutely everything.
Another thing that helped tremendously was my mom being accepted to hospice. I am so relieved to know that my mom is seen by a nurse 2x a week. It was like pulling teeth to get anyone to reply to me from her memory care. But her hospice nurse always keeps in touch with me-even if it’s just a quick text letting me know how she’s doing. And we come up with solutions to problems together. A lot of times she will FaceTime me when she’s with my mom, which really helps. Another thing that was a game-changer for me regarding hospice-they have a different set of rules and regulations (at least in my state). I had never seen my moms room for the first 6 months-but because she’s on hospice I can do a room visit, which is so great because I started being afraid to take her on outings because she fainted a couple times. Also I was able to see her room and what she needed in there. If your husband is currently in the hospital and will transition to a care facility-I believe you will be assigned a social worker. I think they may be able to help you regarding hospice.
I can’t imagine how hard this must be for you. It has absolutely broken my heart to go through this with my mom. But it must be so devastating when it is your husband. There is that feeling of being in limbo. You are not able to start the grieving process because they are still technically here, but at the same time they have been gone for a while now. I hope you get some support and assistance and have people to lean on. Im so sorry you are both going through this.

TChamp Jun 2022
Both early and late onset Alzheimer's are very similar. However, there are a few academic differences. Early onset has more cases of hereditary dementia, also there some small anatomical differences of destroyed cerebral regions. Patients with advanced Alzheimer's, both early and late onset types, frequently forget to swallow. It very common to see in nursing homes the staff trying to make a patient swallow food. They put the food inside their mouths and the patient doesn't know what to do with it. Some will hold the food in the mouth without swallowing it, while other will spit it out. These advance Alzheimer's cases are close to dying from lack of a good nutrition. I must say that the majority of cases that can't eat are already in wheel chairs unable to walk.

Becky45 Jun 2022
Thanks for input. Update They were making plans for hospice care because he wouldn't eat. Thursday I went to hospital tried to see him but NO so they took vide of me. I saw video of him where they showed him a video of me. He reacted on 4th viewing and tried to talk. Dr kept telling me he had stopped eating that he couldn't. But Friday they said he was smiling most all day. They tested him and said he could swallow and put him on liquid diet. Today his nurse said he ate some and was eating pudding right then. Of course they were feeding him. When he gets strong enough he will go to NH. When they find one.

lealonnie1 Jun 2022
My aunt with advanced Alzheimer's never lost her ability to walk......but she stopped eating a couple of weeks before she passed away. One has nothing to do with the other. Your husband is at stage 6 of AD so anything is possible. Definitely look into a hospice evaluation asap so he can be kept comfortable throughout his end of life transition.

Sending prayers and hugs your way. I know how tough all this is. I lost my mother in Feb to advanced dementia and heart failure and believe she was having small strokes in the final months of her life. Her passing was peaceful thanks to hospice.

BarbBrooklyn Jun 2022
Becky, it may be time to ask for a hospice evaluation.

I don't know about "the usual progression" but I wonder if perhaps he's had a stroke that accelerated his decline.

((((Hugs))))
Isthisrealyreal Jun 2022
That was my thought too.

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