Caring For Aging Parents Support Group
Caring for aging parents can be a difficul time as we become the caretakers for our parents. This broad responsibility can encompass such services as assisted living, adult day care, long term care, nursing homes, hospice care, and in-home care. Whether you have just started caring for your parents or just need a place to talk, we're here.
Today, I wrote on a thread offering my take on the subject. Another person read my thoughts and expounded upon the ideas. Their writing reads so honestly that I sent acknowledgement via our DS Hug feature. It said more than I came out with but something I have thought many times about my situation.
I have the OK to copy and paste this.
" Peacful has a great point. I have experienced many who are stuck in their home alone with one single exhausted caregiver without any respite from the struggle. They start to see their loved one as a project to be fixed over and over rather than helping them thru the end stage of life. Even when it is clear that the end is actually near, they have trouble adjusting to the fact that dying was always going to happen and still hang on tightly to "change this medication"; "keep the blood pressure up"; keep those O2 numbers high enough"; keep this working and that working and on and on. The loved one can be lost in this constant battle to simply keep them alive. They stop being heard when they say, "I have had enough now. Please let me go." because the family member care giver has lost sight of their real objective which was always to help parents cross over to the next stage of life.
When we have rest times and others to advise, we can offer them the peace of a dignified passing without pushing thru every possible treatment past their endurance.
We need to alleviate suffering for them. That includes being trapped alone in a bed with nothing but a TV and one caregiver to visit despite being totally exhausted. "
Thank you for being honest you are saying what I can not.
Respectfully,
P
I have the OK to copy and paste this.
" Peacful has a great point. I have experienced many who are stuck in their home alone with one single exhausted caregiver without any respite from the struggle. They start to see their loved one as a project to be fixed over and over rather than helping them thru the end stage of life. Even when it is clear that the end is actually near, they have trouble adjusting to the fact that dying was always going to happen and still hang on tightly to "change this medication"; "keep the blood pressure up"; keep those O2 numbers high enough"; keep this working and that working and on and on. The loved one can be lost in this constant battle to simply keep them alive. They stop being heard when they say, "I have had enough now. Please let me go." because the family member care giver has lost sight of their real objective which was always to help parents cross over to the next stage of life.
When we have rest times and others to advise, we can offer them the peace of a dignified passing without pushing thru every possible treatment past their endurance.
We need to alleviate suffering for them. That includes being trapped alone in a bed with nothing but a TV and one caregiver to visit despite being totally exhausted. "
Thank you for being honest you are saying what I can not.
Respectfully,
P
This is what I experienced last year with my dad. He had vascular dementia, a series of TIAs and strokes and other heart related events that were killing his brain cells. Eventually he had a major crisis which included probably a stroke and infections. He came home but was never recovered. For two months my parents struggled, searching for an answer from doctors. The GP sent him to a cardiologist who said he needed his pacemaker changed so he did that. He grasped at straws. He did PT and OT several times a week but his body couldn't recover.
In his last few weeks every morning he asked my mother if he was going to die that day. He knew what the rest of us couldn't accept. Finally another crisis came and he was back in the hospital. I was calling inpatient rehab because we could get him better. Then I saw him in the hospital. He was gone. What made him him was gone. He didn't want food or water. Couldn't understand even simple questions or instructions and he was in horrible pain.
It took that moment for me to realize that the time had come. No rehab, no recovery, no more. But it's not an easy thing to accept.
When my MIL passed her kids were split. Two realized that mom was dying and two wanted to try everything. Mom was ready but they weren't. Four years later I still don't think they are ready.
In my opinion part of being a caregiver for a loved one is recognizing when the person is done. When they are ready to pass from this life. When it is time to let them be at peace. Helping them pass with peace and dignity and love surrounding them.
We are so focused on fixing things for so long that it is easy to forget that there will come a stage when we have to change over to helping them move on to the next stage of life.
We can either fight that crossing over with everything we have available to us thru demanding procedures and treatments, breathing rubes and feeding tubes, and refusing to allow pain relief because we want them lucid and think pain relief can only shorten this stage etc
OR
Encourage them that this is just like being born into the next stage of life. Just like birth it is scary but necessary, this step is also scary. But we will be with them until the angels (or whatever you believe) come to take them off to live their new life.
I have seen family be so selfish with the cancer cases we have already faced in death that it made me think seriously about how I'd want to be treated when I am that close. I even encouraged the dog to cross the rainbow bridge telling him that his time here on earth was finished and we would be coming very soon to join him.
It is changing our mode when they need us to focus on helping them journey home rather than continue to hang onto a broken dying body that is what I was pointing toward.
That was my point!
I only watched family wait for those with cancer to slip into unconscious and then demand some life prolonging procedure after which a couple even tried to prevent nurses from giving pain meds cause they thought those would only hasten death. One had to be forcibly removed from the hospital because she carried on so.much.
In my moms case, doctors knew she was riddled.with cancer all over. Once she was unconscious, family demanded the doctors get plastic pieces to replace organs no longer working. When mom some in ICU, she's asked me why I did not stop this. Her life was just procedures and running back and forth to hospital, being admitted, going home to suffer when my sibling took her pain meds or "forgot" to fill them.
I live far away. But one night when I witnessed moms e torment thru the night, I actually found the script in sins purse and got.it.filled at 24 hour place. When she went to work, I searched the house and found about a dozen hidden away. She was letting mom suffer out of belief that pain meds would kill her faster. She wanted mom under her "care" for as long as possible. Mom stopped smattering
All that mastered was SIB being able to complain and cry and get sympathy from all.comers. she as totally self.centered.
So I see selfish. Others see what they lived.
We have to learn from our experiences. Sharing here we can only share what we have.lived.
By the way, those unfilled scripts meant a lot to the trial. I imagine a refusal to allow pain relief might have had similar weight. UT thankfully, I had written proof.
Gentle hugs
It is normal to fear her dying. She most likely is not at the stage where you have to adjust to "this is the end". Try to be at peace and know that you are doing the best that you can each day with the information available to you up to that day and only that point. Try not to look back on decisions and judge the past because new information comes to light later on that maybe a past choice might have been wrong.
You can only do what you can do each day.
And don't "should" on yourself.
You know, saying things like
"I should have been there to keep her from falling"
"I should have done it differently"
"I should have __________"
These just drain your emotional energy.
I have to take a moment to thank peaceful for starting this thread. It is really helpful to be allowed to just voice the worries about making this adjustment.