An internal struggle...

[Alleahnna]

I have been struggling with this alone for awhile and after reading some of the other posts today, thought I would reach out for some advice myself.

My grandmother is 84 years old, in a nursing home, has dementia and is rarely lucid. She has a very clear living will and in the past has made it clear of her wishes, but as we have power of attorney for her, we are constantly asked to change the conditions and allow them to do more for her. She has pretty much completely stopped eating and is probably not much longer for this life.

She has been barely lucid for months now and my mom and I have been trying to deal with the nurses and doctors harassing us to put tubes in, IV's etc and we have been trying to honor her wishes despite the constant feeling of judgement from the health care professionals.

I went to visit her a couple weeks ago, mainly to check on her condition, how she was being treated and in my heart, I knew it was to say goodbye. When I walked into the room, she opened her eyes and told me she was tired and ready to leave. She no longer wanted to live, she hurt and this was no life for her. She just wanted for it to be quiet. I asked her if she was scared and she said no, she only wished she had learned more in this life. I sat there holding her hand, prayed with her and reassured her she had done all she needed in this life and if she was ready, it was ok to go. This was the first and last time she has spoken so clearly in a long time and I know her spirit was reassuring me we are doing the right thing in letting her go. Yet the struggle to deal with the almost daily phone calls from staff etc. constantly has me questioning. My mom refuses to really even think about it, so I feel alone in this.

No one else was there to hear her and I know in my heart she is ready to go and I pray for her wishes to be granted. Yet I can't quite shake the guilt over wishing her to die, for her pain to be ended....and anger at having to deal with judgement on an almost daily basis.

Has anyone else dealt with this? I keep going within and trusting that God will handle this, in the proper time and it is not my choice. But reconciling that with making life and death choices for health care feels like a major burden some days and I am not always sure I am up to it.

Thanks for listening and somehow simply putting this down in words brings some peace to my heart.

[Mairi the Herbwench]

My husband and I dealt with it with his granmother - she was put into a nursing home against her wishes, but she could no longer take care of herself at home and living with a relative wasn't an option - we were living with her. She remained completely lucid, but hated being in the home, and essentially, willed herself to die.

Is it an option for you to have your grandmother put into hospice care? They provide pallative therapy only, and are very respectful of the family and patient wishes. My sister0in-law is home with hospice care now.

It's never easy to let a loved one go, but usually, it's best for everyone. My thoughts to you - and best of luck.

[AnnaFaerie]

I worked in a nursing home as a bookkeeper for a year. This type of HARASSMENT was not allowed. See the administrator and tell her/him that anymore calls from the staff..pushing for more treatment than your grandmother's living will calls for..will not be tolerated. If they want to hear from your lawyer keep up this kind of behavior. If after that meeting you get one more call from staff.........call a lawyer.

It seems to me that they want to prolong your grandmother's life so they can keep getting her monthly payment.

Respect your grandmother's wishes. You are doing the right thing! Do not let them make you doubt that you are doing the best thing for your grannie. Stay strong.

[Lady Laurel]

O I so feel for you. My grandmother was in similar dire straits and finally left the world for a better one many years ago. I carried so much guilt that I had wanted her to die but the simple truth is who wants to be here when things are so awful for them. It is hard for your mother to let go she may never.
I am so sorry this is happening to your family. You will be in my prayers.

[Angel_of_Fire]

My grandma was a amazing woman! she loved with all her heart. only had 2 kids and 1 grandkid(me!) but her life changed many people. she knew john trovolta and worked as the casting director for many movies.

she died last year on sept 11/12. she DIDNOT under any circumstances want to be on lifesupport! no matter how many times we told people this they would still get the machine ready right in front of her. we had to fight them the entire time! so i will tell you this BE STRONG!!!!! you know what she wanted they dont! so but im not to fond of dotors( i feel that they killed my mother instead of trying to help her but thats a different story). i would agree that you should look into hospice. i hate them but they are very helpful. i know these must be a very hard time for you right now but know that we are here for you!!!

[Buxom Wench]

The first thing is...... major hugs coming your way.

My grandmother passed away 6 years ago and she also had a living will. There was to be NO "heroic" life saving measures. No artificial feeding, no tubes, NO NOTHING.

That is what she wanted and that is how it was. Many people tried to pressure us but things were done the way GRAMBE wanted NOT what others wanted.

I know how difficult it can be to make those life altering decisions (for you, for her, for everyone) but, be strong, respect HER wishes and let her die with the dignity she requested. That is the greatest gift you can give her now.

When the time comes, as sad as it will be, try to remember not to mourn her passing but, to celebrate her life. She gave you many memories, lessons and love. Don't ever forget that.

Once again, many hugs, blesswings and prayers to you, your grandmother and all of your family.

P.S. tell the medical staff that they should also respect her wishes and just keep her comfortable and peaceful.

[Wolves Lady]

:grouphug:

Since your Grandmother has made her wishes clear, and has set the legal means to see them through, you have no need to feel guilty about honoring her wishes and in honoring her- even though it is so very hard to let her go (and she sounds like she is a wonderful woman). Stand firm against the people who wish to dishonor her last request, and make it clear that you know your grandmother is not afraid of death, and wishes to leave this world for one free of pain, and that she has made that clear to you on many occaisions. She lived a long and beautiful life, and deserves to leave it with grace and dignity.

I agree with the others - hospice was designed for situations just like this, and most hospitals/nursing faciilites have a hospice care coordinator that can help you. Make sure you speak to them before signing her over to them, however - the dirty secret of hospice is that many insurance companies do not cover the full cost of care, if any at all - and you may have to work out finances (horrible/mundane as that sounds) before transferring her (since hospice oftens costs as much as hospital care when in a facility). If you cannot do hospice, then the Doctors are still required to honor your grandmothers wishes, and allow her to die peacefully.

My thoughts and prayers are with you. Be strong and stand up for your Grandmother, and take care of yourself right now as well.

[Myfanawy]

I agree with all that's been said. Your grandma decided, when she was still quite able to express her decision in a lucid state, what she wanted at the end of her life. In writing and spoken word, which she reiterated to you in that moment you had together. The hospital staff should respect that wish to the highest degree. Why is it that at the end of life (at least when people are elderly), they are often treated as children again? The elderly have lived a life full of experiences, and are (usually) THE most qualified to decide what is best for them at the end. Enjoy your last days with her--celebrate her life and your love for each other together.

My thoughts are with you. I lost my grandma several years back, and I miss her terribly. (I'm convinced she's still sending me pie cravings from beyond--boy, could that woman bake a pie!)

:grouphug:
--Myf

[BuxomBrigid]

(((Hugs)))) I've been there and done that with a grandparent with dementia. It's a VERY hard situation, especially for those that remember the person before.

I agree you should write the home (formally) and ask them to stop harassing your family as you plan to follow your grandmother's wishes that she laid out in her living will and would appreciate their assistance in doing just that.

I'll be praying for stregnth for you and your family~

[Alleahnna]

Thank you all for the suggestions and support today. I did reach out and someone sent some really good energy out there for me, b/c I got a different social worker today and she spoke to the nursing home for us....and was very loving and supportive. I was terribly surprised but very gratified to reach someone that could and would and did actually help AND understand what we needed.

I am looking into the hospice option as well, although I have had a very bad experience with that and was hoping to avoid it in this case. But I will stay open and do whatever is in Nana's best interest.

Again thank you all so much. My prayers and thanks go out to all of you as well.

[daBaroness]

Hugs to you.

By all means, honor your amazing grandmother by following her wishes. Perhaps the staff of the nursing home is well-intentioned, but they don't really know your grandmother - they know only the body they provide care for. They don't know how she lived her life, what she valued, her strength, her passion ... they know none of that.

I know it's terriby difficult - but she's so clearly expressed her wishes to you. I absolutely believe we know when we're done. Both of my grandmothers made very clear decisions about when they were ready to go - each in their own way. One even decided to hang around a few extra years (and even said so) so she could meet her last grandchild (he was a surprise baby). She had diabetes and knew her body was shutting down. The doctors told my grandfather they were going to have to amputate her limbs within about a week. Grandma wasn't told - but she knew. So she gathered her children to her one last time to say good-bye - and then she left peacefully in her sleep just hours after they returned home.

My other grandmother was healthy and lucid as a horse - until my grandfather (her husband of 55 years) passed away. She went quickly downhill - slipping into dementia and had to be placed in a nursing home with just a few months. She carried on conversations with loved ones who'd long ago passed away - telling me and my father about her visits with them. She developed painful shingles and other physical ailments. Finally one day my dad told her it was OK to go. He thanked her for being such a good mom, wife and grandmother and told her to say hello to everyone on the other side for us. She passed quietly and happily within a week.

A former boss had the same thing with her mom - her dad was in bad health as well, and she had to just sit down with her mom and promise she'd take care of her dad until he was ready to go - that her mom had earned her rest. Relieved of her fears and concerns for her life-long partner, her mother passed within a few days - and her father within a few months of his wife.

I'd give the staff a heartfelt thank you for their concern, but let them know it's of utmost importance to honor your grandmothers wishes and preserve her dignity. Thank your grandmother - love her and tell her it's OK to rest.

Blessings to you all!

[milcliar]

Hon, I have been a nurse in LTC for 30 yrs.................this is not allowed......the harrasment......you and your family know your grandma, not the staff...............sounds like she wants to die w/dignity...............and, know that is your wish, too. Have you and your mom concidered Hospice? All my prayers and energies...........
L&L, Milcliar

[Alleahnna]

I have been talking with them about it. They have backed off on the phone calls and seem to finally be respecting our wishes, after I made a couple calls as some of you suggested. It helped a lot and I mostly trust our wishes will be abided by now.

As for hospice, I am looking into it. I had a very very bad experience with them once before, but am considering it. I know it isn't the whole program, rather just one improper person, but it does tend to taint it.

I need to rant for just a second though.....how the hell did this world get into such a mess that something like death, which should be a natural act, become so entangled in politics and judegment and such. Why is it so damn hard to just let someone go with dignity? Why must they prolong it? GRR!!!!!!!!!!!!

[Galleywench]

:grouphug:

I'm of little use for advice on this topic...but my heart goes out to you for support.

[Mairi the Herbwench]

I need to rant for just a second though.....how the hell did this world get into such a mess that something like death, which should be a natural act, become so entangled in politics and judegment and such. Why is it so damn hard to just let someone go with dignity? Why must they prolong it? GRR!!!!!!!!!!!!

It happened along with loss of respect for our elders. It happened when the family found it easier to put mom or dad in a nursing home rather than take care of them personally. It happened when youth became worshipped. It happened when we quit dying in our 50s and now live much longer.

There are so many reasons why it happened, but it's part and parcel of the breakdown of the extended family.

Please don't get me wrong - it's not always possible to care for someone at home - especially if the person has demetia or a host of medical problems that require more care. I've already let my husband know that if his mom dies before his dad, his dad is not moving in with us. I took care of my mom before she died when I was 15, and that cured me of ever wanting to take care of anyone else. #1 reason why I chose to be child free.

I do highly recommend another go at hospice care - it's allowing my sister-in-law to be at home with her family, and provides as much dignity as possible for someone who is in pain, has most of her body systems shutting down, and is dying.

Best wishes to you and your family - this is a very tough time. I was an orphan at 15, (with no grandparents living ) and in many ways I'm glad it's all over. Now I can support my husband when his parents reach their time.