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Up until a couple of months ago, my grandma was still eating quite a lot for her age and is very clear-minded. Unfortunately, she developed ulcers around her lips. I can't begin to describe how terrible they are. The ulcers were completely black and covered her entire lips. We took her to the hospital where she is receiving IV fluids. She is doing better and her ulcers have started to heal. However, the doctor could not figure out the cause after the biopsy. She will need to return home soon. The doctors said we can put her in a hospice for her remaining time but she is very scared to be there (she's been at the hospital for about a week now and my family is taking turns staying with her). They make it seem like she won't have much time left.


After we bring her home, I wanted to see if anyone had advice on how to make her comfortable? I don't think she would be able to eat a lot because her lips are still very painful... Are we meant to just let her wither away as she cannot really eat? It is really sad to see my grandma suffer.

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I agree with CWillie, that grandma could sustain life a long long time on puree food; they could even be pureed to thin in a manner in which they can be taken by straw. How is her appetite? Is she WANTING to eat? You would be amazed at how long life can be sustained with little food, esp in age and low activity levels. I think that the request for an immunology expert is excellent. I haven't in a long career run into what you are describing unless in a patient on heavy chemotherapeutic agents. Sure do wish you good luck.
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My friends son had the same symptoms and it was an autoimmune disease that took them forever to diagnose.

Please make the hospital get an autoimmune specialist in to see grandma BEFORE she is discharged.

Can grandma eat anything? Ice cream? jello? Broth? Give her as much as she can tolerate. My friends son said it hurt to much to eat and they thought he would starve to death. They gave him high calorie food whenever he could eat anything. I am so sorry to hear that another person is being sent home because of incompetent medical personnel.

May you get a doctor that is willing to go the distance for grandma.
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haileybug Nov 2020
Good advice.
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People live a long time on liquid and/or pureed diets, as long as she can still swallow then there is no reason she can't recover from this. You haven't mentioned any other life threatening conditions so my knee jerk reaction is that hospice is being recommended simply because of her age and apparent frailty and no doubt confusion in the hospital - you and your family know her better than doctors who don't really know her at all. Whether or not you choose to enlist hospice services when she returns home she will need 24/7 and you will need to figure out how to provide that.
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So, your grandma was doing better and the ulcers appeared to be healing after she received IV fluid at the hospital?

However, the doctor could not tell you what is going on but just suggests you put her in hospice? He doesn't give you any other recommendation or how to care for grandma at home?

Sounds to me, grandma did not have a good doctor. SMH

I would get a second opinion.

In the meantime, please do make sure grandma is getting some nutrition. At least some ensure.

Prayers for dear grandma.
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Can she at least suck through a straw to drink some Ensure drinks? At least then she would be getting some nutrients and calories.

When my husband came out of the hospital from having aspiration pneumonia in 2018, I was told he would be dead in 2 days, and so he went immediately into a Hospice facility. But once there he began to show signs of improvement, and since they are not allowed to keep people there that they don't believe are dying soon, they sent him home. Now there is an exception to that rule, but it involves the patient or patients family paying out of pocket, for their loved one to stay there. And it's very expensive. So my husband came home under hospice care where he remained for 22 months until his passing in Sept. this year.

In home Hospice initially had a nurse coming once a week to check vitals, and an aide coming twice a week to bathe my husband, as he was bedridden. That was it. The rest of the care fell on me, so just be prepared if grandma does come home under Hospice care, that 99.9% of the care will still fall on you and your family.

So at this point I would just try to do whatever is in the best interest of your grandma, as at 95 her days are limited anyway. Enjoy whatever time you have left with her, and just make sure she knows that she's loved. God bless you and your family.
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Hospice at home is not 24/7 care. It will bring in services to help with care. However, family will still need to take turns if you want someone with her around the clock.
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TODAY, make contact with the hospital social service department and tell them that you will NOT be able to give Grandma the care she needs at home.

Whether Grandma says she is scared, or acts as though she’s scared, she cannot be considered appropriately responsible for her own care if she is unable to consume nutrition in some way. If the biopsy gives you helpful information, you will have at least that, but I would also request that she be evaluated by a speech therapist to determine whether or not she’s still able to swallow effectively.

If you do not get enough information/help to care for her at home, you will need to consider hospice care, for HER SAFETY AND COMFORT.

Both her age and her physical condition indicate that her present condition is not manageable without SPECIALIZED CARE.

You have come to the point at which there are NO choices that can be made that will be easy, comfortable ones. It will be difficult for those of you who love her to consider this, but if she can be made comfortable in a hospice, and you can visit frequently, this is a possibility that you MUST attempt to remain objective about.

I am hoping that you will be able to learn something helpful from the biopsy or possible swallowing study. She is blessed to have a conscientious and loving family. Remember, safety and comfort above all.
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I’m so sorry that your grandmother is suffering with ulcers.

I don’t have experience with this but others might so stick around for answers.

Best wishes to you and your grandmother.
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