I feel compelled to comment on a couple of things you said. There is a National Organization for Hospice. Each office does not just do what they want. I am sure some of the details are slightly different but the basic philosophy is the same. They are dedicated to promoting and maintaining quality care for terminally ill persons and their families. They are not an organization for Euthanasia. They do not overdose with morphine. My best guess it that patients die within week of being accepted by Hospice because a large portion of the public believe it is for the last days only and other untruths. No, they do not accept patients who want to pursue aggressive medical treatment. They are for terminally ill patients who decide not to pursue aggressive medical treatments. Both my parents and both my in laws were under the care of Hospice. Dad (advanced vascular dementia and heart disease) lived three months in comfort with little morphine until the last few days... and none the last 18 hours. My FIL (broken neck, dementia, and strokes) was in a Hospice house his last weeks after a sever stroke that left him paralyzed and unable to swallow. My MIL (dementia) was under Hospice at home for months as well. And my Mom (advanced Alzheimer's) is still on Hospice... and has been for over a year. Their doctors, nurses, and social workers are caring and compassionate. I will also add that they have recently treated my Mom with oral antibiotics for a UTI. That falls under comfort care. They are also doing a swallowing evaluation to tailor her diet to her needs. I say this for somebody reading this stealth or in the future. I is an important service for those with terminal illnesses.
Not all care facilities are bad and not all care facilities turn away disruptive dementia patients. I does need to be a cooperative effort between the family and facility to find solutions to the behavior.... whether it be dementia intervention or medication as needed to calm but not sedate. The focus of a good facility is peace of mind for the family and resident.. not keeping a quiet facility. If a loved one does have some form of dementia you do need to find a facility that is qualified to deal with dementia behavior. Not everybody understand demented behavior and you can't expect the loved one not to act out. So it is important to find the right facility that gets it. Not all facilities are created equal but there are some excellent facilities out there which do know how to deal with disruptive dementia behavior.
All4Mom, I can see that you are quite pro-life and don't really like nursing homes. You are not the only one. Well you may be rare in this group, but I know some people feel that way. I know a caregiver who told me he will care for his own Dad at home. His adopted kid has feeding tube due to disability. The home care nurse for my FIL was not for nursing home although her late MIL died in a nursing home. However, she is for hospice.
There is no right and wrong about your choice. But you may want to ask yourself some question seriously. Let me start with your definition of suffering according to your post:
I mentioned DNR without pain and you think life is more important than suffering more pain at CPR. You feel your Mom is NOT suffering from the tube. My definition of suffering is not just huge pain like a dying cancer patient. It can be extreme confusion and expression of don't want this kind of life thing. Your Mom did say why she is here doing all these things... It can be mental suffering if not physical.
We cannot just live with suffering. I am not God and Jesus so I am human and prefer not to "suffer" this way, physical or mental.
I am not saying you should let her go, but you may want to think about what you are saying for suffering and etc. What you feel about it can influence your decision.
What is more cruel? To suffer physically and mentally or to cut short of the suffering life?
It is hard to say but we have to walk carefully here because it is not obvious black and white as to what is suffering or that Mom is or is not suffering.
You seem to be influenced by your own thinking that some services are extremely unfriendly and are not for what you want. Maybe it is what you want that is questionable here. I understand you like to keep her alive. Ask yourself a question, do you want to live this way? It is the same thing when you ask about caregivers or nursing home. We all have to compromise. No service is perfect but we are not royal to keep our loved ones at home with lots of expenses.
Hope you see a light at the end of the tunnel. Praying for you.
I realize I step on some toes when I voice my experience with (and please remember that YOUR hospice may differ from OUR hospice; each chapter sets - to at least some degree - its own policies) and/or opinion of either end-of-life decisions or nursing homes, but I do have a right to my opinion and ask no one to agree with me. I hope we're ALL secure enough in our own beliefs to allow others theirs and full expression thereof...
I am "pro-life" (both ends; if anything, more so on the senior end than the baby end) and DO personally feel that even the best nursing home can never be "home"; people simply doing their jobs for a paycheck can never take the place of loving family members. On the other hand, I realize how few of the ill elderly have that choice, having neither the money nor relatives willing and able to tend to them. My mother is one of the few fortunates who does, so I'm more than comfortable in my role there.
That said: I'm not stupid. I, more acutely than anyone, can see that my mother is preparing to depart; the time is drawing near, and her quality of life is nearing zero. Consequently, I AM rethinking "end of life decisions," as is only appropriate - neither prematurely (as so many do today, IMHO) nor too late. Of course I don't want her to go (although my strong conviction is that it's to a far better place), but I realize it's inevitable and, at a certain point, preferable; I trust myself to know when that time comes. Above all, I trust my Creator, author of life, to exercise his right to take life...
Since these are all such "touchy" subjects (not just on this board, but everywhere today), I'll try in future to give and take advice without debating them; hope you'll do the same?
"The focus of a good facility is peace of mind for the family and resident.. not keeping a quiet facility. If a loved one does have some form of dementia you do need to find a facility that is qualified to deal with dementia behavior. Not everybody understand demented behavior and you can't expect the loved one not to act out. So it is important to find the right facility that gets it. Not all facilities are created equal but there are some excellent facilities out there which do know how to deal with disruptive dementia behavior." I certainly can't argue with any of that, but keep in mind that not everyone lives in The Big City with dozens of facilities to choose from; if one has all the facilities in the world to choose from, of course one could find the "best." However, in my small town, there are TWO, one of which should be shut down as a health hazard and the other of which has already banned my mother on the basis of her unruly behavior; that leaves NONE unless we choose a facility very inconveniently far away, which will necessarily limit our visits (mine, because I must continue to work and also have other responsibilities here: pets and rental property, not to mention my own life, and brother's because he WILL NOT go). Quality of life -- the term we bandy about so readily -- for my mother means seeing her two children, her "whole world," as she calls us, on a daily basis for lengthy visits. For that reason and many others, I chose home care for Mom. I'm there morning, evening, and night, and brother faithfully continues his "supervised visitation" (he insists I stay on the premises in case needed for something). Today I ran Mom's pump for the first time (scary, but lots of things are lately); if successful, it will free my schedule up AND be easier on Mom than bolus feeds. Life may not be "good," but it's okay, and we're grateful for it. Let's talk less about death and more about life?
In the small town I live in there is ONE facility! It happens to be excellent but it has a waiting list a mile long. It is the one I helped start and worked in for years and I couldn't even get my parents in the locked unit in a timely manner. The facility Mom is in is 40 miles from me in the next city. Yes, there are trade offs but for her care and myself it is what worked for us. There is not always a perfect solution and compromises do have to be made. I have no problem with caring for a loved one in your home. It is just as viable an option as a care facility. But that does not mean all care facilities are bad and only in home care is good.... on the flip side not all in home care is bad and only care facilities are good. Each situation is very different and you have to decide what is best for you. I just don't want others reading this thread to think that all care facilities are horrible and in home is the only way.
Yes, quality of life gets bantered around a lot. Each has their own definition of quality of life. There is not a universal definition that fits every situation. As I have said, I had my parents directive to follow. I agree with their directive. Therefore my decision have not been easy but I am sure they are the right ones. You have a very different view on what needs to be done and that's ok. Your decision is right for you and mine is right for me. From that others need to take away the fact that they need to make up their own minds as to what direction they take, with consideration of what their loved ones have expressed, and go forward with assurance.
Even though I have chosen Hospice my focus is in the living and not the dying. My intent is to help Mom live well until she dies. That is why I chose the Geriatric Behavioral Med Unit for her. Her cocktail of anti psychotic medication has given her 3 years of contentment. She is not sedated and as fully functional as possible minus the hysteria. I have her in a facility not just for convenience but because of the stimulation she receives that is appropriate for her level and condition. It is also a security issue because of her wandering. She was able to wander for years, safely, within the confined area which included an amazing courtyard. She needs to be outside to feel alive and that is the only place she could have that freedom. I do agree that we need to focus on how to help them live the best life possible... until they die! But I think the focus has to be on living the best life and not the longest life.
Hi everyone, it seems like this was the most popular blog, so I thought you might be able to help me out. We are trying to avoid send my Dad to a long-term care facility, but we're having a tough time coordinating tasks within our family. This has caused a lot of stress within our family, so I was curious if anyone had any suggestions on how to get our whole family helping with care, rather than just a few of us taking on the full load - which we can't. Any suggestions are more than appreciated.
Daryl, I don't have the details about your family so I can just say something that I can think of here:
It is very nice that you got a big family to help out. First of all, legally, there have to be POAs for finances and health proxy for Dad. One person or two in the family as the power of attorney for Dad is enough. It is teamwork in the family. Usually you can divide the work among the family. It depends on their jobs. If some are nurses, they can help more. If some are teenagers, they can housesit Dad... They need to take turns. Also Dad has to stay in one place so he cannot move around for you guys.
I know a caregiver whose family has many nurses and kids. The Dad is invalid, so the grandkids take turns to housesit Dad/Grandpa. The wife is a nurse so she can take care of her husband (the dad).
Usually there is a primary family caregiver and this person will have to organize the caregiving and assign the work for family members provided that the member is willing to do that.
For sure everyone needs to be nearby. If all members are in the local area, they can take turns to help Dad.
Also it does not hurt to hire a part-time caregiver or certified nursing aid to help Dad to bathe him and etc. If he has Medicare, home health care can do come to bathe him once a week or so.
I wish I knew Darylh! If I had the answer to that one I would write a book which would make me rich and famous! It seems in every family there are some that do and some that sit on the side line. Yes, it would be easier if everybody would share the load equally but that is not what happens. One does the most, another helps a little, and several do nothing. Then you have the ones that do nothing and complain about what the others do.
As I have said many times before... the only person you control is yourself and how you deal with what you are given. Others make their choices and there is not much you can do about it. You can let it make you nuts or just go on without them doing what has to be done. If that means Dad ends up in a care facility so be it. Just know you can't make somebody do something they are not willing to do.
It might help to have a family meeting to discuss what needs to be done. Somebody can come up with a schedule of times or jobs that needs to be done. I have found it beneficial to use an online group for communication. That way everybody has access to all the information at any time... no excuses. If one of the family members doesn't pick up their share of the load there is not much you can do about it except pick up the slack.
Sometimes a big family doesn't mean lots of help with Dad
Deb got a point. You didn't say if the family has any anger or emotional issues. But you cannot force the family together by saying you want to take care of Dad at home. Some members may want to consider a nursing home.
A big family has so many members and some have different thinkings. The adult kids of Dad are the ones that have more power over what they want to do for Dad. The grandkids may have different thoughts but they can still help out because the parents ask them to do so.
You can only collect so many family members who are for this option and set up the teamwork, but you cannot force some members who may not choose this option.
Hope you will find some solution. Don't force everyone to be on board. Just get enough people to help out.
