My grandmother is now strictly on liquid lorazepam and liquid morphine. Her starting dose was 0.25ml of morphine and 0.50ml of lorazepam. The nurses have told me i could give her 1ml of each if needed, but haven’t provided entirely specific instructions. I used to help her onto her toilet chair because it was the only time she got out of bed, but recently she hasnt been able to hold her weight very well and it has gotten very hard on me. She shakes the rails of her bed and begs me to help her get out of bed (as well as she can) She will shake the rails and say “locked?” She does her best to scoot and try to get out of bed. I feel horrible for not helping her now, but even the aid advised me not to if she cant put weight on her legs. But they told me that long ago and i still did. I hate to see her so upset that she will never leave that hospital bed again and makes me wonder whether i am trying hard enough or if she should be medicated more as to sleep and not be awake and in stress. I try to give her her medications on a schedule but sometimes she refuses. One nurse has told me when she starts refusing to just open her lip and give it to her, but i feel bad about doing something without her consent, even though she doesnt make much sense these days. Can anyone give me an opinion on this situation or a similar story? She only has a week left and this all happened so fast.
If your grandmother is trying to get out of bed and rattling the bed rails, that means her anxiety is very high (which she probably cannot even recognize at this point).
The purpose of the pain medicine and anti-anxiety medicine is to keep her calm and pain free during her last days, however many that be. She should have enough medicine in her that she doesn’t try to climb out of bed at all. That’s not good.
I’m sorry that you are going through this trial, and alone by the sounds of it. Just keep in mind that your Grandmother will be at peace soon, out of pain. Hugs and peace to you.
I do feel that it is important to relate to your grandmother according to her beliefs.
If she isn’t religious, she won’t find prayer or other religious literature comforting.
I am glad that you accept your grandmother exactly as she is. I don’t like when people try to force their religious beliefs onto others.
You’re doing a wonderful job caring for your grandmother.
Have you spoken again with your hospice social worker?
Thinking of you. Everyone knows that you are doing your best with caring for your grandmother.
Many hugs sent your way.
Please know that you aren’t ‘drugging’ your grandmother. Most of us on this forum actually hate that expression.
Medication prescribed by your hospice nurse is necessary. It’s all about comfort during her final days.
https://www.smartpatients.com/communities/hospice
But if gma is comfy on the meds, like you said just being able to rest, enjoy hanging out with you and watching TV, then they are giving her comfort. My mom was running around like a maniac, so that was not comfortable :) So we skip benzos now and just go with the seroquel and I make her an herbal tea blend I made a few years ago for my own nerves and back pain. (We're both hibiscus junkies and its very yummy.) The seroquel seems to be calming her anxiety/depression so that's great -- it is just taking a bit to build up. The dose started teeny and is still small.
You're doing everything you can, the best you can.
i suspect ill be one of the maniacs that when my mom is stuck in bed wanting to get out my answer will be to curl up in the bed with her. I've already had to do that a few times this past year when her nerves were too bad. hubby is tolerating a great deal <3
But lemme add - when my mom does refuse meds, I just ask again in 15m or so. ie, if she doesn't want morphine cause she's out of breath, ill ask again in 15 or so mins. It can get exhausting if you wanna just get things tended to so you can take care of the rest of the house or whatever needs doing, but, you're giving her a choice. "would you like your dose of", "Can you do me a favor? Can you take (tmedication)?", "Can i give you (medication)?". I also always ID all medication and say why I am giving it to her. It helps my mommy keep a sense of control over what's going on around her. If she refuses I ask if she'd like it later, that gets a maybe. Then yeh, another 10m I ask again.
The pulling open of the mouth thingie while she's conscious and, well, as lucid as she gets yeh that prob feels horrific. even with permission to ie to my mom it is written on my face in the few times I had to do it and thankfully she doesn't remember those times.
As long as you're not overdosing her, its okay.
It sounds very much to me that you have never been for hours with someone who is dying. Continuing support can be very helpful.
You believe that “God takes people when it's their time”, so God can do that whatever meds they are taking.
Telling a carer that following hospice instructions is “absolute torture and hell on earth” is a truly dreadful thing to say. Pray for forgiveness.
I am so sorry that you are going through this. Thanks for your update and I am so glad that you are scheduled to see the nurse today. I know that my mother was greatly comforted by her nurse.
Don’t hesitate to speak with her social worker if you want to. They provide services to the family before and after a patient dies.
Wishing you and your grandmother peace as you move through this difficult time.
This is basic stuff, and the nurse needs to re-read her organisation's medications policy. Good Lord. Her advice is - whether it's her intention or not - pretty flagrantly aimed at achieving a quiet life for the care team regardless of the patient's wishes. Morphine works quickly, so at any point you can ask your grandmother if she's in pain and if she says yes you can provide relief fast. Just keep strict records about how much you're giving and at what time.
I'm very sorry for what you're going through. With only a few days left to you, this is the time to talk to your grandmother about her life and your shared family. If she wants to get up and it isn't a good idea, explain and reassure, ask if there is anything you can fetch for her, and try to get her to engage in quiet conversation.
I hope you have a profiling bed and a slide/glide sheet? It's good that she's able to help position herself, but with that basic equipment you can help her be seated or lying in virtually any position that is comfortable for her.
PS What your grandmother says doesn't have to make much sense in the ordinary way. Just prompt and listen and make encouraging noises. There could be a load of things she'd like to get off her mind.
The most important thing for you to remember is to remember that hospice care is about being comfortable during her final time on this earth.
You are absolutely doing the best thing for her by administering medication to relieve her pain and anxiety. Do not listen to anyone who tells you otherwise.
Follow the advice of the professional hospice nurses who are trained in this field and have experience with caring for the dying. They are the ones who are closest to your grandmother and see her firsthand.
The nurse will be your best advisor. She will be able to see any signs of distress in your grandmother and recommend the best treatment for her, such as giving her the proper dosage of meds. I’m sure that you want her to die peacefully.
I am incredibly grateful to the hospice nurses who kept my brother and mother comfortable during their final time on this earth.
It’s obvious to me how much you love your grandmother and I know that you wouldn’t want her to be suffering as she transitions into death.
There is absolutely no good reason not to medicate her at this point because you know that she is not going to get better and deserves to die with dignity.
She will accept that she is dying and be at peace if she is medicated properly and is calm due to the medication that has been prescribed for her. Trust the professionals.
Wishing you peace as you continue on with your caregiving journey. We are here for you to offer support. Please feel free to update us on her status and don’t hesitate to ask us questions about any of your concerns.
Many, many hugs for you.
You probably know already, but the easiest way to toilet is to make sure she can roll to one side. Fold the exposed bit of the used diaper close to her back, clean her, and replace the old diaper with a new one, also folded next to her back. Then roll her the other way, clean a bit more, take out the dirty diaper and bring the new one under her as she lies on her back again (or use a second diaper if it's easier). Talk gently all the time it's happening, so she knows what is going on. You can change the bottom bed sheet in much the same way. A flat sheet is easier than one with elastic.
Put a blocker of cushions or something firm at the end of the bed so that she can’t scoot down – also doctor’s instructions. As others have said, don’t worry much about food but keep her lips and mouth moist. Ice chips, lightly frozen juice, a wipe of sweet custard on her lips that she might like to lick. Get an eye dropper, and give the liquid medications with it, slipped into the far edge of her mouth so that she need not open her mouth for a spoon. It will help both of you.
Have courage, and remember that the only important thing is to keep her comfortable. When someone is dying, there is nothing you can do wrong. If she sleeps on and off, make yourself comfortable close by and sleep yourself whenever you can. It can be a long journey, and you need to sleep yourself.
Lots of love, and great respect to you both, Margaret
Everyone should feel as you do when caring for their loved ones. It’s certainly the way that I felt when my mother and brother died in hospice care facilities.
I will be forever grateful that my family members didn’t suffer needlessly. I am so grateful that my brother and mother didn’t object to medication to keep them calm and comfortable.
Ask your hospice to tell you the signs that death is near. There will be differences in breathing, in the color and temperature of the extremities.
I am so sorry you are facing this loss and so grateful that you can be there for her now, this last loving act that does her and you honor.
Speak to your hospice RN about offering food to grandma, b/c that can prolong her end of life transition, which is not your goal here. Small sips of water on a sponge stick or from a straw is one thing, but food is another matter entirely. It's hard for US to manage hospice care, but your RN can direct you about what's best for grandma at this point. Also be sure to ask about the catheter; it was a HUGE blessing for both my mom and my dad when they were under hospice care and did not have to get up from bed to use the toilet.
Best of luck.
Lillian,
Please take note of Lea’s advice about food.
My friend took care of her younger sister with Downs Syndrome. She also had in home hospice care.
When the hospice nurses would go to my friend’s house, they told her that her sister’s appetite was declining and NOT to force food.
My friend was really struggling with losing her sister and she kept feeding her food.
The nurse told her that she was prolonging her sister’s life by continuing to feed her but that the end was near. Hospice nurses are really good at seeing signs of the end coming.
She kept feeding her sister and became very upset because her sister started throwing up. The nurse had to tell her again that her sister wasn’t hungry because she was actively dying. Food will make a person uncomfortable towards the very end.
As I was losing my LO recently, this was one of the hardest struggles I experienced. So many wonderful times to recall, the vacations, the holidays, the jokes, the thoughtfulness, all so very important to me. I’m sure there are also numerous lovely memories you share with your dear grandmother too.
You are so fortunate to have nurses caring for her who have an objective perspective on her circumstances, and who you can ask for their input.
Does she still have a lucid sense of “consent”? It sounds as though perhaps not. Could you be comfortable urging her to take a small sip of her medication if you believe she refuses the whole dose?
It took me a while to make peace with the idea of giving my LO medication, and ultimately I was able to develop a sense of comfort with doing so, although I don’t believe it actually became necessary.
Know this- your grandmother loves you, and will continue to. Be with her with hugs and kisses, and tell her often that you love her.
It was my LO’s love that sustained me as things got harder.
Allow your grandmother’s love to sustain you.
You’re right, afterwards, we do cherish the good memories that we shared with them.
Follow the instructions that the nurse gives you.
I’m so sorry that you are struggling with this situation. It’s hard.
I have only been to Monroe, Louisiana once, a very long time ago.
I’m in New Orleans.
I just read your profile. I also live in Louisiana. You’re in the northern part of our state though. I am in the southern part, New Orleans.
Your post made me tear up. You are so very young and kind to be caring for your grandmother with breast cancer.
I am glad that your grandmother is on hospice. My mom was on hospice too, except as she neared the end of her life she was able to move into an ‘end of life’ hospice care home? Is that an option for you?
I know that this is very difficult for you. It’s heartbreaking to see our loved ones near the end.
My heart breaks for you doing this by yourself, or do you have other family helping you care for your grandmother?
At the end of my mom’s life she was completely bed bound like your grandmother. Hospice kept her comfortable. Mom had Parkinson’s disease and dementia. She was on morphine for pain, Ativan and Seroquel to keep her calm.
Speak to the hospice nurse to see if she wishes for your grandmother to continue with the morphine and lorazepam at her current dose she is taking now or if she recommends a different dose or drug.
Please do not deny her medication for pain or anxiety. You are not ‘drugging’ her as some people believe. Hospice is about ‘comfort’ care.
Do not worry about having your grandmother’s consent. She has shown you that she is upset, possibly afraid too and needs calming meds.
Do as her hospice nurse says to do so she won’t suffer or be afraid.
Hospice provides a social worker for the patient and the family. Please contact them for assistance and comfort. They also provide clergy.
Wishing you peace as you continue on during this difficult time.