Mom fell on Wed nite and broke 2 ribs. She has been in hospice for 1 1/2 years for her dimentia. Before the fall she was walking talking eating and doing everything I would do just without recall. I kept her home till Friday keeping her comfortable with small amounts of morphine every 6 or more hours, when all I could get her to eat was a banana that I had fed her in little pieces. In the evening I couldn't even get her to drink (I even tried a straw putting fluid in her mouth) so I called hospice and had her taken to the hospital for fluids. Now she just lays there and does nothing but stare. You can get her to smile and every now and then get a small chuckle from her. It was her desire when she could make decisions, never to be kept alive with a feeding tube or machine if she were to need them. I will not put her though that since she said not to.
I haven't made final arrangements and know I need to do this now. How long can she live with just being hydrated? Should I sit by her side or is there time for me to step out for a day or two to take care of things?
i love the fact that u are saying this- ( and feeding tubes can be painful and temp.)
i believe that somehow the dementia/alz , as horrible as it is, allows other partsofthe brain to be used-parts of our brain that were discouraged and prevented from developing-for me - it was gut feelings or intuition- i was always being told- thats not true-you dont really feel that way-
with my mom, there have been many times ,before taken away to Mass.,when she surprised me with statements so truthful about situations in the past,that she denied all my life- apologized for past behavior.she has spoken about her parents, and my dad-all have passed-and if she had a visit with them and spoken to them-usually she asks-where are they? they aren here..right
and i say no - not here but close by-
i call them her dementia moments of truth-
as strange as it sounds, i have been lucky enough to still get visits from her mom and dad- who took care of me much of my childhood-and my sister who passed many years ago - i am sure many dont believe in that kind of a thing-but it happens to me-every now and then-
and i think it happens for our loved ones when they are open enough and can receive that kind of energy-
true or not, it makes sense and works for me-
just wanted to share- because whatever u do- will be the right decision-
love and hugs,
k
I'm sorry your sister and neighbor feel otherwise, but often people have different opinions, especially when a change is sudden due to injury. The thing is, injury is often the catalyst for a shut down in the elderly. They are walking a fragile line and a physical event can often turn the tide.
You have been caring for your mom for the past 9 years and I trust you know her wishes. Keeping her alive by medical intervention so that she can continue to live in the reality of ever increasing dementia, until the next event happens, seems in great contrast to the wishes your mom has expressed to you.
At this time, it sounds like her wishes would be that she be kept comfortable and have you by her side.
Sending you love and support, Cattails
I read all answers by all and it sure does help to have you stand behind me. My sister (who hasn't seen mom in the past 6 months) and our neighbor (her other paid care giver for 6 years now) both say try the feeding tube for a few weeks or so to see if it helps bring her back. I am being told I am not interpreting her desires correctly. I may not be in one way but I know that she had no quality of life other than the personal home care given at home. We rarely went many places and when we did she had no recall of any of them and ofter wished she could be with dad and her mom. She would have dreams and wake confused because the dreams would involve doing things with those who have already passed and she couldn't figure where they went. She would say I wasn't telling the truth about their passing since she just saw them. I'm rambling now sorry. God Bless you all!!
We also had to scurry and find what to do with Mom's last husband.
At that time, we were able to find a very low-cost cremation service [it was about $600, but they went out of business].
Mom didn't want that--she wanted her body to make a difference.
For her, we located:
a service in Portland, OR, that collects remains and provides human tissues for medical research and schools.
The remains are cremated [no cost to family],
and can be returned to the family, or they take care of it.
There is also
www.LifeLegacy.org
located in Tucson, AZ.
Documents need signed / notarized in advance of need.
They may limit body weight to up to 240 or 250 lbs.
Lifequest said they could collect remains from at least as far away as UT.
I didn't ask if they collected remains from farther away.
IF one goes thru regular mortuaries, the cost of cremation is much higher.
Cost of a funeral is enormous, and hits families at times when they can least afford it, and are very vulnerable to being convinced of spending loads of money they too often do not have to spend--- especially after they likely have had huge medical bills.
Mom got much solace from having her hubby's ashes in a box under the bed.
People can perform their own ceremonies that are more meaningful for the family, using ashes, than can be done with formal burials.
[[G'ma wanted to be wrapped in a clean linen sheet and buried under a lone oak tree on a hill, but that was forbidden--she ended up being scattered--her second choice!]]
Having discovered these options for our elders, we have chosen to do same for ourselves, so have been collecting papers to have on hand, ahead of time. We both figure that we can do good with what's left of us, while preventing some unscrupulous industries from profiteering off our remains!
I would also like to say that It might be good to get references to a good mortuary so you know ahead of time who you want to be called in. It took me several days to finalize things and pay for my dad when he passed unexpectedly in April. I did know who I would go through because we had decided ahead for my mom because we thought she would be the first to go. She's still here and I've had her in my home since late October.
It is a brave thing to honor someone's wishes, and hard to see them dwindle.
It sounds like you have taken very good care of your parents.
It is important to listen to your heart & listen to the wishes your Mom may have previously or would have voiced if she could,
to make decisions for her now.
A person can last quite a while even just being given fluids
...you said she is on an IV to keep hydrated
--perhaps that is listed under "comfort measures", because getting dehydrated is very uncomfortable. But it is not always required. It is up to you now.
When a person has any of the dementias,
observation has shown that despite mental confusion, they do, at some level, know a few things still.
Often, something as basic as eating, is something they can still control, and they do.
When they refuse to eat, even when lovingly fed tiny tidbits of something they used to love, it usually means they have chosen to take that way out, to stop the discomfort from being dragged out any longer.
If a person is overweight, and/or well hydrated, and depending on what other health issues are happening, they can last weeks to months on an IV, depending what is in the IV.
In a hospice unit, I cared for one elderly lady who, with her family's support, and medical support, chose to die.
She had organ failures, diabetes, rheumatoid arthritis, & some other ills, and simply didn't want to live like that any longer; there was no shred of relief or quality of life, left to her.
By consciously choosing, stating the details to her Doc, & to her family, putting it in writing ahead of time, her wishes were honored.
This took place back in the 1980's, so things were different then:
SOME staff had problems with her choice to die
--both some Docs & some nursing staff
--it was up to those of us who understood, to do everything we could to prevent any of those from doing harm in the process.
She chose:
Only injectable or suppository pain meds to keep comfortable as possible.
Only to have her mouth rinsed or swabbed to keep it comfortable.
Regularly turned & kept clean.
To be talked with, reassured, assisted to talk with her family who called by phone from long distances.
She was rather large--over 200 lbs.
Without eating, or IV or anything by mouth, & even with all her medical problems, it took about 2 weeks before she died.
But she died loved & supported in her wishes.
She and her family seemed very close, very spiritual, honoring life & the Hereafter.
They all focused on the good things she had experienced, and the wonderful person she had been to them.
Some patients chose to have every help and assist they could opt for, both to keep going and to keep comfortable, though the ones who did treatments usually didn't get to stay in the Hospice program, since the Hospice program, at that time, was only for those approaching death.
Some patients chose to die, but their families refused to honor those wishes, and chose to get extensive treatments despite the patient's wishes.
NOW, there are more gray areas for the use of Hospice. More staff are better trained. There is more use of formal paperwork so the patients have their wishes formalized and legally binding.
But there are also still many who have nothing formalized.
It is then up to the family to stand up for their loved one's wishes as the best they can, to be the best Advocate for them they can be.
Caregivers work so hard; this is one last step in advocating for loved ones.
Unfortunately, it also comes when caregivers are usually worn out and so tired they can scarcely deal with this.
Touch your heart, breath!
If you need to ask advice from her Doc, or from the nursing staff, do it.
They cannot tell you what to choose, but perhaps, their words from their hearts, can help you, too.
{{{hugs!}}}
Chi
This may seem very sudden to you. Mom was active just a few days ago. To me, that is ideal: to be active and alert right up to the end, and then have only a brief period of departing. We don't get to specify how we want to leave this world, or how we want our loved ones to, but when my end comes I hope it is not a drawn-out prolonged parting.
I think that final arrangements can wait. If I were you, I'd stick close to Mom, so that you can get back very quickly if called.
I'm glad to hear you are not going for a feeding tube or any life sustaining measures. Those were not your mom's wishes and it's good that you are respecting he wishes. Have you spoken with the hospice people and asked them this question?
My mom had a series of problems, then a broken hip. She had surgery for it and came through that, but then decided she did not want anymore efforts to keep her going. She just wanted to pass. I'm giving you the Reader's Digest version her. My mom did not have dementia, but she had many years of dealing with physical handicaps and no longer wanted to continue the struggle. She had all of her medications stopped and only comfort measures continued. She was given a morphine drip at that time and we were by her side. She lived another 4 days. She did not eat or drink water during that time. It had been a challenge to get her to eat prior to her decision.
I think each situation is unique. What condition the person is in at the time they stop eating, when they stopped eating. My mom had eaten little for quite a while before she decided to have things stopped. So your mom may last longer than my mom did. Is she still on all her medications? My mom had Congestive Heart Failure, Pulmonary Lung Disease (never a smoker) and so many other issues. For years, she had taken 8 Vicodin per day, maximum dosage. She was always a trooper, but also looked forward to an afterlife where pain would no longer exist.
Keep on top of her vitals and get direction from the hospital staff. Do what you have to do and check in regularly with the staff so you are up to date on how she is doing. I think you already know this, just offering my best reasoning.
Good luck to you. You have been a kind and loving care giver to your mom. Sending you prayers and please stay in touch. Hugs, Cattails