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Upstream Asked February 2015

Has anyone ever wished a parent would die from natural causes prior to being placed (permanently) in a nursing facility?

My father has been admitted to a nursing facility. It may be temporary, or it may become a permanent state of living. He may be in some stage of dementia and is becoming very nasty. He has always expressed the fear of ending up living in a nursing home, and has made it clear he would rather die, from anything, than end up living that way. So, as his mental abilities deteriorate and I wonder what his future is, I find myself thinking it would be best for him (and us) if he died naturally at this stage of the game, before he falls apart and drags us all down with him. Anybody else ever feel this way? I'm feeling guilty about this.

xmorgan28 Feb 2015
My 82 year old mom is now in a rest home. It has been about 3 weeks. Mom never wanted to go into a home. She can't walk or take care of herself. After getting over the guilt at first I see it as a blessing now. I feel I maybe getting my life back at least the daily pressure is better. We want our parents to be happy, if hoping they die peacefully at home could be a choice, I see nothing wrong with that. Having to deal with elderly parents is HARD, give yourself a break.

Takingcareofnan Feb 2015
My husband and I take care of his 94 year old grandmother. We just had her placed in a nursing home because she cannot live on her own and staying at home with 24 hr care would be too much. Although I know that the nursing home is the safest place for her, I question our decision all the time. Than there are days where something goes wrong, either she is sick, in pain or weak, and I realize that if she was home with care, I'd still be responsible for checking on her, getting her to or arranging for her care. Even though it feels selfish to put your loved one in a home it is not. You are doing the best that you can for them. I battle with negative thoughts everyday too. I constantly wish that we weren't left with the burden of taking care of her. I constantly wish that other family members would step up and help. I wonder all the time when she will pass because I know that our life will go back to "normal" and I can start focusing on my life again. I am constantly thinking about her, calling her daily and visiting her multiple times a week. Her life has controlled our lives for the past 2 yrs. it's a viscous cycle of feeling bad for her so I do all and everything that I can do to help and feeling frustrated, angry, depressed that I wish she would maybe die. It's so horrible

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BarbBrooklyn Feb 2015
Upstream, that is SUCH lovely news! My theory of life is this; sometimes, if you're lucky, you get into a situation in which you get a foreshadowing of what "might" be. When your dad gets stronger, perhaps have a serious conversation about all this, so that you know exactly what his wishes are.

There's a wonderful book called "On Being Mortal" by Atul Gawunde, who is a doctor. He talks about a father and daughter who had this hard talk at one poiont when her dad was well. Her dad's idea of qualtiy of life was being able to watch football and eat ice cream. (!). Several years later, he needed some very serious surgury; the the middle of which, things took a turn for the worse. the surgeon needed to ask the daughter which was to proceed. She remembered what her dad said and asked "if things go badly, if you try this risky thing and it fails, will he be able to eat ice cream and watch football?" the surgeon thought about it and said, yes, he certainly would. the daughter was then able to say, with a clear conscience, "go for it!". She remarked later that she would not have gone in that direction had she not known her dad's specific wishes.

Hope that dad continues on the upswing and that you and he enjoy each other for many more years.

Upstream Feb 2015
Update: my dad has somehow bounced back and it now looks feasible that he can come home at some point! My earlier problem/post may not be our family's reality at this time. Thanks to everyone for the comments and support. This is a wonderful forum.

terryjack1 Feb 2015
You shouldn't feel guilty for thinking about your father's wishes. Death is a part of the circle of life and many people would prefer death to living in a nursing facility. Nursing homes have changed since the 1970's and he may find it's not as bad as he thought. My mom died almost 11 years ago, while I would love to have her back, I wouldn't want her back if she were going to be ill. My father is 81 and still reasonable active although he has medical issues and has slowed down. I would wish for him to pass before he became bed bound because I know he would want that for himself. Maybe you can check into assisted living programs. contact your local area agency on aging, he may be eligible for programs that could help pay for assisted living. You can also contact your local long term care ombudsman, she/he is an advocate for those in nursing homes and has a wealth of information.

BarbBrooklyn Feb 2015
I'm glad the psych consult is scheduled!
With regard to NHs, we tried the 5 star one, and after not having a stellar experience, we went with a lower rated one suggested by the discharge planner after mom's next hospitalization. It's not perfect, but it's smaller, not much staff turnover and has a wound care doctor and geriatric psychiatrist on staff.

One thing to know about nursing homes; you can ask the staff till you're blue in the face, but it's the doctor who writes the orders. Make sure there is an order for a complete assessment of her skin once a week. If it's written, it gets done. If it's not, it seems to be catch as catch can, and sometimes aides and nurses seem reluctant to report skin ulcers on their own because it affects the facility's rating.

Upstream Feb 2015
A psychiatrist is expected this week, to evaluate his overall state.

Katie22 Feb 2015
Please do not feel guilty for the way you feel. My Dad would have hated nursing homes and he was lucky for his sake to pass before it came to that. Then I had terrible experiences with nursing homes that were rated 5 stars by medicare when my Mom went in for rehab for just a broken arm. She developed multiple health problems in there as well as a stage IV bedsore because they let her lie in bed when they couldn't figure out she had a UTI. After she was rushed to the hospital with delirium the nurse at the hospital intake showed me the bedsore....I was stunned.Needless to say I never sent her back there. After 2 more hospitalizations she is now bedridden in my home. It has been very difficult though I have a nurse for her. She wishes she would have passed back then. It has been awful to watch her lose her independence and suffer so. You are feeling compassion and wanting to spare your father more suffering when you want him to pass before he has to go through the NH chapter, and this is what he has indicated to you. It puts us in a difficult place because while we want our parent to live, we don't want them to suffer. Please don't feel guilty.

BarbBrooklyn Feb 2015
Has he been seen by a geriatric psychiatrist? Look, nothing helps the confusion, but the resulting anxiety, agitation and depression CAN be treated. My mother was never nasty, but it felt to her like the world was ending with every snowstorm or bout of loose bowels. Antidepressants and anti-anxiety meds changed her life (and ours).

Upstream Feb 2015
Thanks to everyone for the responses. Babalou, being the "enemy" is what I fear, too. In my dad's current mental state, that is what we already are. He is very disdainful, but too combative and confused to come home. The only family to care for him is my mother and I. It's Sunday 7 am and I'm already at my desk, trying to get ahead at work so I can take time off for his logistics during the upcoming week. There is no way my mom can care for him by herself, and no way I can be there enough. Kudos to those that do full time care and make the sacrifice.

ohmeowzer Feb 2015
Yes I do that is a good question ijust worry about mom being treated bad there

BarbBrooklyn Feb 2015
My mom has vascular dementia, chf and is in a nh, wheelchair bound after several bouts of pneumonia, broken hip repair. She knows us all. A couple of months ago, she fell ended up in ER, was diagnosed with heart block. Needed a pacemaker. She has a DNR and DNI I argued against pacemaker but was told it is not an extraordinary measure. I think my brother and I were both willing to let this be the "peaceful" end, but my sister in law, who is the one who actually visits mom the most, argued strongly for it. We ended up asking mom what she wanted ( she still has capacity). She wanted the pacemaker.

Since then, she has had a horrific episode of lung failure, sepsis, but came back with the aid of a bpap in the hospital.

Do I wish we had let her go when she needed the pacemaker? Not sure, because I can't know what the endgame will be. I want to spare her pain and indignity. I don't want to get to where she doesn't know us, or where she thinks we're the enemy. I think that your feelings are completely understandable.

Jetcitygirl Feb 2015
Omg. Daily

ilovemom2 Feb 2015
Upstream, a few more tips... I switched over to the ALF doctor, so they made house calls and I never needed to go to those appointments again. They had an adorable beauty shop and my mom enjoyed going, they also took care of her hands and feet. They did all the medication, so it was all out of my hands. They had housecleaning come in everyday and laundry once a week. They had room service. It changed my life. The best part was when my mom was 90 and very sick, they were by my side, the nurses were there any time I needed them. The other people that lived there became friends too and we were never alone. My mom went from laying on the sofa all day to getting up, dressed and caring how she looked. There were many men and couples, I would have loved it for both my parents. My mother-in-law's new ALF is equally as charming. It makes all the difference in the world to know they are safe and you CAN live your own life!

Windyridge Feb 2015
Dear up stream. I am also an only child or more precisely, the only living child. Please don't let your elder care situation takeover and wreck your life. Do you want your children to give up their lives when you need elder care? I think its great that some caregivers are able to live with and care for their elders until the end of life. But I don't think it's feasible for most of us and we shouldn't be made to feel guilty about it. Nor should you feel guilty because you want it to end. Be smart, be strong and take the best course for YOU and your parents. Best wishes to you.

BarbBrooklyn Feb 2015
I think that's totally an ace table way to feel! Who doesn't wish for a painless and quick death for themselves and their loved ones, at the appropriate time? My concern is about the last part of your statement, about bringing everyone else down in the process. I guess we all need to insure that THAT doesn't happen. You take care of yourself, make sure that dad is getting good care but not hovering over him.

Upstream Feb 2015
Babalou, yes we have those things in place. I know my dad would never want to just vegetate in a facility. Unfortunately, I think that may be his future. My fear is that he may linger on for years. He is not ready for Hospice care - is that only at the time that things become terminal? I believe he would rather go "lights out" than just exist in a facility. No, in fact I'm sure of that based on our conversations of the past. It's just difficult to come to grips with the idea that I would rather see him die of something like a heart attack, just boom, gone, than a in a lingering weakened stated where he cannot live independently. I guess that was my original post, just wondering if that is normal, or I'm awful for feeling that way.

Upstream Feb 2015
ilovemom, that is great advice! My mom is independent and strong right now and she and I foresee that she will continue to live independently here in town. We have a lot of ALFs in our area. I'm so glad you shared your story. I see that my mom would progress from their existing residence, to a "regular" apartment, then to a nearby ALF if she prefers. She's under 75 years of age, and her own mother lived to be older than 90, so she has many good years left, if she does not get dragged down by my dad.

Upstream Feb 2015
Patrice, thank you much. It is hard to accept that so much is out of my control, yet impacts my life (and my loved ones) so much. It's difficult to put myself first, but I have to maintain my marriage and my business or I won't have much of a future of my own. I know a lot of people give up their own lives to take care of their parents, and that is commendable, but it's not for me. My New Year's resolution was to start taking more time to enjoy life this year. Not working out so good, so far.

ilovemom2 Feb 2015
You poor thing, there is nothing wrong about wanting a normal life. Put them both into assisted living together. Assisted living is a far cry from a nursing home. My mother had a beautiful apartment with a living room, bedroom, kitchenette and a private bath. She surrounded by her own funiture and personal items. She had a bracelet and strings she could pull 24/7 for any type of help. She ate in a formal dining room and ordered her meals from a menu. They had a coffee bar in the morning that turned into a happy hour bar around 4:00 with wonderful live entertainment and appetizers.. We all loved visiting her there and they took wonderful care of her. We had her at home with around the clock care for about five years before we made the decision and it was the best decision we ever made for her. It was about $1000 dollars saving per week. It was way more affordable and she was making friends and having fun. Check them out, you may be pleasantly surprised! I wish I did it five years earlier, it gave us all peace of mind and our lives went back to normal, well... as normal as they were before...

BarbBrooklyn Feb 2015
Does he have a DNR and DNI in place so that he is not "rescued" from something that will cause his demise? Is hospice care something to look into?

Rosebush Feb 2015
Dear upstream, only you know what is the best decision for your dad and like you said you still have your mom to take care of. Sadly to say, it is what it is. Don't best yourself up over these decisions. You are one person and trying to keep all safe and happy. Praying for some peace and acceptance for you.

deb0452 Feb 2015
My mother is mean and nasty every day and I wish she would die every day.

Upstream Feb 2015
Thank you for your comments. At this point my father is not ambulatory and is not in touch with reality. He is rather nasty and fidgety, only resting for about 6 hours a day. If he comes home, he will likely be the undoing of my 100 lb. mother, and then I will have two parents who cannot live independently. I am an only child, and if caring for him at home requires a large amount of time on my part, I will have to sacrifice the business I have run for 20 years (which will mean financial ruin), and possibly my marriage. I believe if we had to bring him home in this state, the domino effect would be devastating on so many levels. Before this, I was barely holding it all together. I know he would not want to live this way or have this effect on the only family he has left. This is horrible!

Rosebush Feb 2015
We have all felt that way at some time during our caregiving journeys. We want the best for our loved ones. Taking care of someone at home (with caregiver help) is not impossible. Each person and their symptoms are different. My mom had lewis body dementia. During her last few years of life, she was the sweetest, most appreciative patient. We were able to keep mom at home and we hired people to help. My husband and sons were a godsend when she could no longer stand, they did all the lifting. Just keep an open mind, not everyone needs to be placed in a nursing home. Have a plan A and B ready and see what each day sets before you.

JessieBelle Feb 2015
Yes, I feel that way. My mother wants to stay home and a NH would be awful to her, no matter how nice it is. I'm like others in hoping that I don't have to face that decision. I know the day may come that I can no longer care for her at home, but I don't look forward to the time. It will be heartbreaking for her and me.

Windyridge Feb 2015
I think most caregivers have these thoughts. How many of us have ever said "please don't let me end up like that!" At some point we are just warehousing people. Any quality of life and dignity have gone. My parents are approaching this point in their lives and to be quite honest, Im dreading year after year of nursing home/memory care especially when they no longer even recognize me.

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