I take care of my 84 year old grandmother. 2 years since it got bad, but she has lived with me for 5+. She has dementia, a type of blood cancer and requires blood transfusions (2+ units) every 2-3 weeks. We have good days, but quality of life is poor. She feels bad alot. She cries when I tell her she has to go to the hospital and says it's time for her to die on a regular basis. More days than not. She cries alot just worried she is a burden. With the dementia she is not the same person I grew up with and is totally dependent. In lucid moments she still tells me she doesn't want that (of her own accord), but won't accept that that's what she is - dependent.
This week I didn't take her to chemo. I just took her to the hospital for more blood (hgb 5!). I think if she was herself, she would want to end this. She has said it many times over the last 6 months, but of course forgets within minutes. When she is super low I give her anxiety meds. But have to lie to her bc she doesnt want to take them.
I am tired. She is tired. If I decide for her, NO MORE treatment, is that murder? Will the guilt destroy me?
It was a lovely moment.
He stopped his chemo treatment soon after. The pall team were a wonderful support.
I agree to contact Hospice for a chat. To discuss Gma's values as you know them.
Yes, you should contact hospice. They will keep her as comfortable as possible to the end.
I think that you need to think long and hard before making any life and death decisions regarding your grandmother. Getting hospice involved at this point though is probably the best choice, as they can best explain what her future might entail. They also offer respite at their facility, so you can get the much needed rest you need to continue caring for her, as you never want to make such a huge decision while being exhausted.
In the meantime though, make sure you are taking care of yourself, and doing things for yourself that you enjoy. God bless.
Is her life NOW what she would want. You have said in lucid moments she said she wants it to end. Then she forgets. I would take the lucid moments as what she wants.
Contact a Hospice in your area. As a matter of fact contact a few and "interview" them just like you would any medical person that you would want caring for you or any member of your family.
With Hospice you will get the help you need as well as comfort, grandma will get help, comfort. You will get the information, supplies and equipment that you need.
Hospice will make sure grandma is comfortable.
If you decide after a while that you made the wrong choice then you can withdraw her from Hospice. But I think you will be pleased with the love and compassion that the Hospice Team has for both you and grandma.
((hugs))
Please do not allow yourself to be filled with guilt. Instead, have peace in your heart that you are doing your utmost on her behalf. That's as much as anyone can do in your situation.
Modern medicine is great but there comes a time when it no longer helps. Why put the lady thru anymore. She is tired. She doesn't want to be poked and prodded anymore. And really for what? She has Dementia. If not now but eventually, she will be in her own little world. She won't be in the here and now. When Mom was hospitalized, watching my Mom cry and scream when staff touched her in any way broke my heart more than letting her go.
I would get her evaluated for Hospice. She will be made comfortable and leave this world peacefully. You did good but it may be time to let go.
Contact Hospice and let them talk to the two of you. Perhaps being educated in what Hospice or Palliative care can do for you will help you to be calm in the decisions.
I don't bame Gma at all for not wanting further TX.
Granny did not have dementia and was lucid until 3 days prior to her death at age 82, actually her 83rd birthday. I was with her every day the last 5 days when she was in in ICU.
Our family fully respected Granny's wishes to not have invasive treatment. 3 days before she died she lost consciousness. She was given oxygen and IV fluids to keep her comfortable. Sadly she bruised incredibly easily and her face was terribly bruised by the O2 mask. I was worried that would be my last memory of her, but it was not, I can barely recollect how she looked, my memories are of happier times.
Have you talked to Hospice? They can help you negotiate the process of dying.
And no, it is not murder to stop treatment. Your Grandmother will not be cured, any treatment is prolonging her dying process.
She has told you she is ready to go. There is no need to feel guilt.
I'm so sorry to read that your 91 year old dad passed away earlier this week as well as you wondering if you could have done anything differently.
Although my mom is almost 96, I too have wondered if I should have pushed her harder to do PT. They are trying it again for the third time.
It's always difficult to see our loved ones not only decline, but realizing their quality of life has gone down to "zero." Countless times, I just keep hearing people say they are "tired" and they are.
May God give you peace in your grief.
As the others have suggested, talk with hospice in your area, at least to know what they can do to help. It's unclear to me - would her doc need to order this, so Medicare covers it, or does hospice take care of that? The nurse at mom's facility called hospice, but they blew us off because mom's records were over 1.5 years old (missed appt due to virus shutdowns.) Second visit after TeleHealth with the nurse, they blew us off again - she hasn't lost weight in 6 months! No, she hasn't but she didn't have the stroke 6 months ago, it was DAYS ago! The nurse was persistent and they finally got a weight and she did lose weight. But, once on board they were very nice, they can help with bathing (not daily), supplies like wipes and briefs, other help (I'm not sure how much because mom was in a facility.) I believe you can choose the hospice company yourself, just let doc know which place and they can update her records.
Much as we don't want to lose LOs or give up too soon, it sounds like these treatments are really distressing her and that she's "ready" to go. It might be best to work with docs and hospice to find the best ways to keep her comfortable and then enjoy the remaining time you have with her, rather than putting her through these treatments she doesn't seem to want.
Someone mentioned having them put her in their facility to give you respite. This WILL incur costs, as Medicare covers hospice CARE, but not the facility. It will likely be distressing to her to have to move as well, and be without you. From the sounds of her condition, without these treatments, it might not be long.
Go for the hospice. Make her comfy and give her all your time and love!
Me *personally*, I would feel guilty FOR continuing treatment for a 84 year old with dementia. I'm 50 and already have orders written against medical help/intervention to prolong life when I am no longer of sound mind.
I agree with the others -- get hospice in for a consultation, and go from there. Call her doctor for help getting in touch with someone, if necessary.
Chemo at any age is very aggressive through out the body. At 80+ is a no win situation.
So...paradoxically the guilty feelings you believe, you would get are only because you are assuming those treatments prescribed by well meaning allopathic medicine practitioners are saving her life as the general consensus would make you think so as well.
Stop for a moment.
Breathe deeply.
Gather up your strength. Change course of action since you see this one is not helping at all.
You do not think chemo works. Stop chemo.
Continue blood supplementation.
Invest monthly in a bottle of Pro stat.
Find a good nutritionist.
Seek naturopathic advice.
Have fun with your grandma while pursuing life.
Give her body a chance to feel out what wants next once you try out new daily therapy.
Give yourself a chance to think outside of the box which well meaning people may inadvertently have created for you.
It is draining being a caregiver but not more draining than the densest sadness provoked by those hours watching a loved one in bed slipping away while listening to emotionally detached experts saying it will be a fine comfortable death.
So do not rush into end of life care prematurely. Without signing into hospice, you can still go to get blood work done etc....in hospice that is frowned upon since it may detect improvement or another illness which may be healable.
Which goes against the pursuit of organ system shut down. Pursuit which is the raison d'etre of hospice.
So no rush unless you have given up 100% for both of you.
I hope your love for your grandma gives you back strength and joy in order to help her and also yourself.
At a certain point, caregiving becomes about QUALITY of life, not longevity. That's what I focus on with my 90 yo Mom who lives with us now.
The first step was losing her total independence in 2019. She became suicidal. Depression and anxiety are robbers. Pysch consult and follow up care have been tremendous. Mom still wants to see Jesus every day, but since I changed MY focus to quality over longevity (and communicated it to her), I've witnessed a transformation in her. The elderly we care for have a lot of thoughts and preconceived notions about what we, as caregivers of them, expect; my mom thought we were trying to make her live longer and that we expected her to totally heal. We did not. She's tired and ready to die. So, we focus on quality of daily life. Sometimes this means NOT running to the doctor for every little thing. WHY? She doesn't want to be poked and prodded and try out new meds that might actually make her sick in other ways. My mom is actually lucky in that she has 3 major issues to deal with: pulmonary fibrosis, stroke potential, and CHF.
The cardiologist and I had a frank discussion with her last year: How do you want to die? Answer: I want to go in my sleep. So, CHF seems to be the solution. We manage the other issues and let nature take it's course while intervening to manage the comfort level regarding the CHF side effects.
Since changing OUR focus and not pushing an unwanted family agenda, Mom is improving at least to the point where she can feel happy gaining a linited level of self-sufficiency.
The point of my story is that when we honor our LO wishes in life, there is no guilt. Even if those wishes are against our personal wishes. We are all going to die abd pass on, in my belief, to be with Jesus - whole and blessed. Find what gives your grandma joy and confort on a daily basis, mitigate the other circumstances and people who stand in the way of that. If you're still unsure of what to do, what does your heart tell you? Do that.
Why make someone suffer by prolonging the inevitable?
Does she have a living trust? That may have a DNR written in there somewhere.
Is the anxiety meds;; Given as needed? Or, are they supposed to be given on a daily basis to keep that medication in her system to keep her calm?
blood transfusion would knock the energy right out of me, especially at her age. I would cry too if I had to keep going to the hospital to get poked with needles and sitting there for transfusion.. (I know nothing about transfusions, and a lot of other things too)
What is the average time your grandma has to sit still for this transfusion? I know older skin gets frail so that must hurt too. I don't care if it's the special tape that doesn't tear the skin.. Just the whole ordeal, anticipating, getting in the car to the hospital, sitting in the waiting room, the whole thing just sounds DRAINING. For Both Of You.. :(
Set up a video appointment with doctor so he can see her, and you don't have to take her out.. especially with COVID...
And I still feel guilty...
but she is "home" dancing with our family.
Mom lived 9 months being safe in MC she finally contracted Covid, 2 days later she was in the hospital. I spoke to her doctor and asked him bluntly what her survival prospects were. He told me he doubted she could survive.
So I discussed it with my siblings and I made the decision to stop treatment except for palliative care. The doctor agreed. I told him I would rather they use the ICU bed for a Covid patient who had a better chance of surviving. Mom lived another week before loosing the battle.
Yes, they could have put her on a respirator and kept her alive but at what physical cost? And if she did survive what would her mental state have been? That much sedation if very bad for the elderly and she would probably have been confined to a bed in SNC. That's not much of a life.
Yes, I still have moments of doubt about the decisions. But then I think about what I would want if it was me in that situation. I hope and pray that my family will do the same for me.
God's peace to you.
What type of physician is currently leading her medical care? - an oncologist or haematologist? In any case, if I were you I would sit down with them (virtually if need be, in these straitened times) and ask them to go with you through the quality of life vs length of life discussion.
There will come a point where treatment is nothing more than pointless torment for your grandmother, and withdrawing it is not murder but ethical, humane common sense. We can't possibly guess whether she is there yet - of course we can't - but her lead physician ought to be able and willing to guide you. If not, if you can't get any help or any sensible answers from that quarter, then try to get hold of a geriatrician or elder care physician and ask for a review of your grandmother's medical history and treatment plan.
This decision will eventually have to be yours to take, if your grandmother is no longer able to make it for herself; but that doesn't mean you have to reach it alone.
When you have all the information you need, so that you can answer your grandmother's questions, that will then be a good time to have the conversation with her. It will begin something like "if we were to stop all treatment except for making you comfortable, how do you think you would feel about that idea?" There is a big difference between a person expressing how dreadfully ill she feels and how guilty about your workload, and helping that person to think through her later life and end of life wishes.
I picked up a recent Readers Disgest. An article in there was about dentists and how one dentist took advantage of a whole list of patients, retired, and sold his business to a new and upcoming dentist right out of college. Oh,, what a story...
and I had an experience with my mom's dentist. He retired, and sold his practice to a newbie. The newbie had her in the office every week, working on one side of her mouth, and then the next... racking up $$$$ ..paying for his college and his new fancy sports car. I didn't know what was going on until my mom broke down in TEARS...HER MOUTH WAS FALLING APART..!!!! ????
What a traumatic and cruel thing to do to someone... Seriously.... I immediately took her to my other dentist,,, and he examined her.. First Question: Why would he put veneers on the molars in the back of her mouth? Exactly Why???? MONEY,,,,MONEY,,, MONEY.... Nobody is going to see them.. they are in the back of the mouth...
I truly wanted to scream at all the older folks in the waiting room to get the heck out.... I saw the newbie doctor, and questioned why he was working on one side when the other wasn't done.....
Make sure all your documents have the clause at the end that states copies and digital versions are acceptable. Even include a clause permitting different methods of transmission.
KEEP a posted OTH-DNR on the back of the front door for EMT and any other med personnel who come to treat and help her.
You may know this already, but just in case. Carry all your paperwork with you. Never give out your original, even if they say they'll scan it and give it back to you. Have copies ready to hand out instead.
My mom doesn't want ANY doctor to have control. READ the language on canned and state forms carefully. I had to rewrite some for my mom because a tiny clause still said "at physician's discretion...blah blah blah."
I was a paralegal in my previous life. My mom was a legal secretary/paralegal for 40+ years. Most of those state and hospital forms are written to CYA doctors, staff and facility and shield them from liability. You can customize them to suit your grandma's wishes, make sure you include a clause that releases the above CYAers from liability.
If you need docs notarized, check with your bank. Explain the limited mobility issue. Mine came out to the car so my mom didn't have to get out.
The Hospice Chaplain can help you...If you do not want him the Hospice Psychologist can.
actually been there, and wasn't told about the Ativan until my expert hospice came on board in the early AM hours....
My hospice team did not offer DRIP.... why? I was told because the patient could overdose... { (?) really? at this point did it really matter? }
I have a copy literally taped on the wall above my LO's bed.. It is light pink so it doesn't stand out as much,,, but it is there for everyone to see...NO Questions....
I have my contact information posted on the walls, pictures on the dresser....
everything anyone needs to see is right there ....
and originals where they should be... and I am sure that the practioners and insurance have a copy somewhere too.....
Made that mistake once... didn't have a copy anywhere so anyone could see, and since I wasn't there.... it was okay... I think the ER made the right choices....
My fam knows what to do if I get that way.... "run away" !!! no, not really..
I hope they know I will be pestering them when I" jump that creek"
It is okay... nothing is guaranteed in life... so let lif happen as does the rest of the things that go with it.... just make sure your "end of life" is "natural" or "preserved" as you wish it to be... Me? Ya, no, if my brain ain't functioning as it should be, as this day, is the first mark of the day for the rest of my life... then please, spare all those around me... don't let my brains rot the rest of my friends and family...let me go.. .thank you and GN