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There was a post about watching a loved one die slowly. It really had a lot of responses, many of which resonated with me. But I cannot find it anymore.
I guess my point was that I have moved on a bit in that I did wonder if my decisions hastened death or suffering, but am realizing now that even if that were true, and I believe you all with my head at least, that I did not cause it , was that was that a bad thing? He was not living anyway, and we were not enjoying watching him. A couple posts on the original thread, one by TNTechie and one by Lurvey could have been written by me, they go through the conflict of wondering if was really a blessing to see their loved one go.
I guess I just miss my dad. But I can more clearly see now that the way he was, it was not good for anyone.
Lots of help on this site, but that original Watching My Dad Die Slowly was so moving and helpful .
Karsten, please know that you're not the only person experiencing these second guess feelings. I know from private conversations that others do, and I've gone through that - this is now the third and worst, most challenging time that I've experienced these recriminations, admonishments to myself, and questions on why I wasn't able to recognize or act on something that happened over 15 years ago.
This is NOT healthy behavior and I have to remind myself that it could cost me my health if I allow myself to dwell on it.
It IS hard to get past this; you have to make an effort to balance your perspective, refocus your thoughts, do something for yourself whenever you're feeling neglectful, and know that it takes sometimes months if not years to work through this.
My sister died of cancer in 2003; I still have nightmares that I didn't do enough to care for her and wish I could relive those years. But I can't, and dwelling on negative thoughts is not helping me and obviously not her.
Why don't you at least try starting the day with something positive that you've done, or get involved in charity work and reach out to others? You're the only one who can changes this preoccupation.
Karsten; I made have told you this story before, so again, just skip it if you've heard it.
My mom was in a NH , post stroke, with dementia, CHF and pleural effusions for more than 4 years after she had a fall that broke her hip. She did pretty well in the NH, with the occasional bout of pneumonia, effusion needed tapping, etc. When she had delusions or increased anxiety, they adjusted her psych meds. She couldn't really talk; she'd had a stroke which made her aphasic.
Last summer, she fell while in the bathroom with an aide. Her wrist was broken; CAT of her head at the ER showed no brain bleed. But back at the NH, she wouldn't get out of bed, developed pneumonia, which of course was treated. She had been on palliative care for 2 years.
A few days after the fall, she started in with horrible grimacing, like she was in terrible pain. She wasn't responding to anything we said to her. Wasn't telling or showing us WHAT was wrong, only that something was making her look like the devil himself was after her (mom had had delusions for years that she was a "bad person", that the IRS was after her, that something was amiss in her life; no matter how many absolutions, priest visits, etc.). I asked for more pain meds. They doubled what she was on. To no effect.
What to do? I was frantic. I only ever promised my mom one thing, that she wouldn't die in pain.
Mom had been "hospice eligible" for the two years she'd been on Palliative, but my brother wouldn't sign for hospice at that time. As mom writhed and I pleaded with the doc and nursing supervisor, the RN said, I think maybe it's time for Hospice, Barbara". As one of mom's HC Proxies, I was allowed to ask for a hospice evaluation, but my brother, as POA, would have to sign the consent. I texted him that I was asking for the hospice eval and was hoping that he would consent if they accepted her, because I couldn't stand to watch this anymore.
Let me make that clear. I didn't have the stomach to watch my mom writhe in pain. Some folks might say it was her pain to bear, and not my place to make it easier for her (I've got GENERATIONS of Catholic forebears in my head saying that I did the wrong thing, Karsten).
My brother signed for hospice. Mom's breathing, which had been ragged,eased. Her face began to relax. And three days later she died. Coincidentally, the day she died, the hospice nurse fed her some thickened soup. She vomitted it up; don't know if she aspirated or not, it makes no difference. That's NOT what caused her death. Aspiration doesn't kill you immediately, not unless you get something big stuck on top of your windpipe, and someone would have noticed that in your dad.
So, Karsten, I think most of us who call in hospice at the end feel a bit like we were trying relieve not only our loved ones, but ourselves of extended suffering. Is that what you're going through?
I would have been much happier had mom been on Hospice for the two years prior to her death. I think I'd feel less conflicted.
Karsten; I may have said this before, so forgive me if I'm repeating myself.
Do you think the NH would have fed your dad, even if you and your mom were insisting upon it, if they thought that it was medically contraindicated? He was still "allowed" to eat, right? No one had put in an NPO order or said "don't feed this man ANYTHING because he might aspirate"?, right?
The docs told you and mom several weeks before your dad died that he would continue to get aspiration pneumonia due to his swallowing difficulties, right? But that rather than putting in a feeding tube (which NO one thought was a good idea), there was a medical decision made to allow your dad the continued comfort of food. Which he continued to accept, right?
Yea. that's it. Many comments resonated with me but especially the ones about conflicted feelings. There were comments by many people saying they were conflicted with guilt, as decisions they made for their loved ones maybe hastened their loved ones passings. At the same time, that could have been looked at as a blessing, as their LOs were suffering. So which is it? I felt guilt that decisions I made in terms of demanding the NH feed my dad, which turned into aspiration, killed him. Yet at the same time, he had not been living anyway, so maybe that aspiration in a sense saved him. Reading the comments that said that perhaps it was a blessing was in fact a blessing to me. I had been feeling guilty about hastening my dads death, yet maybe it was all a great comfort to him.
It was a discussion started by Upstream on May 27 titled "Losing my dad slowly..." The 70th and last comment was posted 2 days ago by RosMus. It was a good discussion that could be made into a book.
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
I agree that:
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I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information").
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APFM may provide information to me electronically. My electronic signature on agreements and documents has the same effect as if I signed them in ink.
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If I want a paper copy, I can print a copy of the Disclosures or download the Disclosures for my records.
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This E-Sign Acknowledgement and Authorization applies to these Disclosures and all future Disclosures related to APFM's services, unless I revoke my authorization. You may revoke this authorization in writing at any time (except where we have already disclosed information before receiving your revocation.) This authorization will expire after one year.
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You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
I guess I just miss my dad. But I can more clearly see now that the way he was, it was not good for anyone.
Lots of help on this site, but that original Watching My Dad Die Slowly was so moving and helpful .
This is NOT healthy behavior and I have to remind myself that it could cost me my health if I allow myself to dwell on it.
It IS hard to get past this; you have to make an effort to balance your perspective, refocus your thoughts, do something for yourself whenever you're feeling neglectful, and know that it takes sometimes months if not years to work through this.
My sister died of cancer in 2003; I still have nightmares that I didn't do enough to care for her and wish I could relive those years. But I can't, and dwelling on negative thoughts is not helping me and obviously not her.
Why don't you at least try starting the day with something positive that you've done, or get involved in charity work and reach out to others? You're the only one who can changes this preoccupation.
My mom was in a NH , post stroke, with dementia, CHF and pleural effusions for more than 4 years after she had a fall that broke her hip. She did pretty well in the NH, with the occasional bout of pneumonia, effusion needed tapping, etc. When she had delusions or increased anxiety, they adjusted her psych meds. She couldn't really talk; she'd had a stroke which made her aphasic.
Last summer, she fell while in the bathroom with an aide. Her wrist was broken; CAT of her head at the ER showed no brain bleed. But back at the NH, she wouldn't get out of bed, developed pneumonia, which of course was treated. She had been on palliative care for 2 years.
A few days after the fall, she started in with horrible grimacing, like she was in terrible pain. She wasn't responding to anything we said to her. Wasn't telling or showing us WHAT was wrong, only that something was making her look like the devil himself was after her (mom had had delusions for years that she was a "bad person", that the IRS was after her, that something was amiss in her life; no matter how many absolutions, priest visits, etc.). I asked for more pain meds. They doubled what she was on. To no effect.
What to do? I was frantic. I only ever promised my mom one thing, that she wouldn't die in pain.
Mom had been "hospice eligible" for the two years she'd been on Palliative, but my brother wouldn't sign for hospice at that time. As mom writhed and I pleaded with the doc and nursing supervisor, the RN said, I think maybe it's time for Hospice, Barbara". As one of mom's HC Proxies, I was allowed to ask for a hospice evaluation, but my brother, as POA, would have to sign the consent. I texted him that I was asking for the hospice eval and was hoping that he would consent if they accepted her, because I couldn't stand to watch this anymore.
Let me make that clear. I didn't have the stomach to watch my mom writhe in pain. Some folks might say it was her pain to bear, and not my place to make it easier for her (I've got GENERATIONS of Catholic forebears in my head saying that I did the wrong thing, Karsten).
My brother signed for hospice. Mom's breathing, which had been ragged,eased. Her face began to relax. And three days later she died. Coincidentally, the day she died, the hospice nurse fed her some thickened soup. She vomitted it up; don't know if she aspirated or not, it makes no difference. That's NOT what caused her death. Aspiration doesn't kill you immediately, not unless you get something big stuck on top of your windpipe, and someone would have noticed that in your dad.
So, Karsten, I think most of us who call in hospice at the end feel a bit like we were trying relieve not only our loved ones, but ourselves of extended suffering. Is that what you're going through?
I would have been much happier had mom been on Hospice for the two years prior to her death. I think I'd feel less conflicted.
Do you think the NH would have fed your dad, even if you and your mom were insisting upon it, if they thought that it was medically contraindicated? He was still "allowed" to eat, right? No one had put in an NPO order or said "don't feed this man ANYTHING because he might aspirate"?, right?
The docs told you and mom several weeks before your dad died that he would continue to get aspiration pneumonia due to his swallowing difficulties, right? But that rather than putting in a feeding tube (which NO one thought was a good idea), there was a medical decision made to allow your dad the continued comfort of food. Which he continued to accept, right?
https://www.agingcare.com/discussions/losing-my-dad-slowly-439379.htm
I plan to read this post in the morning. May God Bless all who have or are caring for loved ones.