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Old 06-23-2012, 07:32 AM   #16
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Re: Rant: Useless paid help

Hi All4Mom,

First off I am sorry this is not working out well and I know it must be very stressful for you.

Sometimes it is hard to accept there is no “fix” even just in terms of keeping them content and comfortable. Sometimes no matter what you do there will be no comfort, no contentment, no peace, no tranquility. There is no treatment, no improvement to be had.

You may wish it were otherwise, but this seems to be the path that your Mom is on.

Unless she moves into more of vegetative state, Or you allow them to try the drug route, I don’t see how it will abate for any considerable length of time. Sometimes our loved one just ends up in a regrettable position and there is nothing we can do about it.

But I think you also have to face that trying to find a fix and keeping her content, which may not even be possible, is placing an unreasonable amount of stress on you, and with very little benefit. If you Mom were still healthy and of sound mind, I don’t think she would want you to risk your own wellbeing.

I also think that you must keep in mind, no matter the type of dementia, they will almost always become completely self-interested. They don’t care if they turn your whole life upside down for a nonsensical whim; at first you feel guilty if you don’t indulge them but it can suck up your whole life and energy and even energy you don’t have left to give, and then it still doesn’t make them happy or content.

Today it is the aide that is the issue, tomorrow it is the noise, the next day the weather, then the dinner, then the aide again, then the temperature of the room, and so on. You could easily spend her money, your money, your health and your sanity trying to make her happy and never succeeding in anything except killing yourself.

I think you have to realize that part of this is the disease speaking and you may have to learn to accept that she may ask for your for every moment she remains on this earth but that does not necessarily mean that you should do so. Unfortunately these situations are not always a short crisis – it could be she lives another 2 or 3 or even 5 years wanting you by her side every minute, in this same or worse state.

If you are willing to commit your every waking hour to visiting her that is your choice, but at least you need some peace and quiet for yourself. With a facility placement you could get that. Again, I don’t think your Mom would really have wanted that but if that is what you want to do, you can try it.

Sometimes it is easier to let things take their own path after we have tried the solutions we thought would work – you tried to bring her home but it hasn’t solved the problem and seems to be taking a big toll. You thought the tube was a good idea, now maybe the results are not what you had hoped. No need to kick yourself or feel guilty, you left no stone unturned. Now is not the time to act on any resentments between siblings; put it aside for now is my suggestion

Personally I think your only feasible and your best choice right now is to work with her physician and social worker to find the best institutional placement you can for her.

If it were my parent I would remove the tube if that meant she could go the Hospice route. You must be aware however that once she is on Hospice that generally they make the treatment decisions, they are not just helpers. Personally I would neither regret having tried it nor feel guilty about removing it but that is not for me to advise.

If all this means retreading back to other places and considering other drugs for her, I think you should do it. The same way you wanted to try your solutions, these institutions will want to try theirs. Letting them try the drugs might not be the worst thing in the world. At least maybe they can stumble on something that will settle her down a little so her last days are less stressful, however many or few of them there are.

You may have to work with them to get her back in but if they see the family is more accommodating, they might consider it.

Also, if your mom has money, you can always try to supplement the nursing home with a companion or something to sit with her, to feed her, or whatever other element you feel is awful about the

Maybe now that you have seen her not content at home it might be easier to accept that she is not going to be content anywhere.

At least in the proper facility, she will have access to everything right there, not have to leave, etc., no crises about brining in aides, nurses, doctors, and you can have some peace of mind knowing that at least she is attended, without wondering if someone will even show up.

I think you need to remember that your mom is no longer in her right mind due to disease and that you may have to start compromising in order to keep your own health and sanity.

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Originally Posted by all4mom View Post
Thanks, Beginning; some good advice in there. However... I don't feel I owe him an "apology" since our AGREEMENT was to leave her in throughout rehab... Hard as it was for me, I held up my end of that bargain; at noSNIP we don't even qualify for our local hospice with a PEG tube in place, so even that drastic step is not an option...

Last edited by Suzy0513; 06-23-2012 at 08:41 AM.

 
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Old 06-23-2012, 09:16 AM   #17
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Re: Rant: Useless paid help

I will add that not all decision on Mom's care are made by Hospice. I have been amazed at how many decisions they do leave up to me. The doctor and nurse will give me their impressions, suggestions, and guidance but many times the final decision is left to me to make. There are some things that are not approved or allowed under hospice because of their philosophy. But if I want an X-ray that they do not deem necessary... I can pay for it. The decision to take her to the hospital for a CT scan when she had a huge knot on her head and was unresponsive was my decision. So there are options... but you have to know it is comfort care and not aggressive care. They are there for not only the patient but for you as well. They want you to feel comfortable with the process. Yes, I am a huge fan of Hospice!

The other part of the puzzle is knowing when to let go. Yes, I want to do everything and anything to make the remainder of Mom's life comfortable. I also know that she is not where she wants to be. Quality of life was very important to Mom. Living just to be alive was not what she wanted. There does come a point when we have to allow them the dignity of bringing the struggle to keep them alive to an end. I do remember Mom doing her Medical POA papers. She looked at all of us and ask.... "Will you love me enough to let me go?" It may have been one of the most important questions she ever ask me and stays in my mind constantly as I go through the path I have chosen.

No, there is no warranted guilt in this process. You do the best you know in the moment and then go on to the next moment and make a choice that fits the moment. There is no look back. What you decide today is what you decide today and no reflection on what has been done in the past. You have been an amazing daughter and do everything you knew how for Mom. You will continue to do that. Just don't get stuck on the past decisions in moving forward into the future

Love, deb

 
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Old 06-23-2012, 01:54 PM   #18
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Re: Rant: Useless paid help

Yes, you summed it correctly. I just meant you cannot be on Hospice today and then want aggressive care tomorrow, then on Hospice the next day; at least in my area they discourage that.

All different Hospices can have different personalities, so to speak. There are sometimes sublte differences between them; some also have different specialities such as mostly end of life (short term) or purely palliative for long term conditions

and yes they are wonderful at being there for the patient too!


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Originally Posted by Gabriel View Post
I will add that not all decision on Mom's care are made by Hospice. I have been amazed at how many decisions they do leave up to me. The doctor and nurse will give me their impressions, suggestions, and guidance but many times the final decision is left to me to make. There are some things that are not approved or allowed under hospice because of their philosophy. But if I want an X-ray that they do not deem necessary... I can pay for it. The decision to take her to the hospital for a CT scan when she had a huge knot on her head and was unresponsive was my decision. So there are options... but you have to know it is comfort care and not aggressive care. They are there for not only the patient but for you as well. They want you to feel comfortable with the process. Yes, I am a huge fan of Hospice!

The other part of the puzzle is knowing when to let go. Yes, I want to do everything and anything to make the remainder of Mom's life comfortable. I also know that she is not where she wants to be. Quality of life was very important to Mom. Living just to be alive was not what she wanted. There does come a point when we have to allow them the dignity of bringing the struggle to keep them alive to an end. I do remember Mom doing her Medical POA papers. She looked at all of us and ask.... "Will you love me enough to let me go?" It may have been one of the most important questions she ever ask me and stays in my mind constantly as I go through the path I have chosen.

No, there is no warranted guilt in this process. You do the best you know in the moment and then go on to the next moment and make a choice that fits the moment. There is no look back. What you decide today is what you decide today and no reflection on what has been done in the past. You have been an amazing daughter and do everything you knew how for Mom. You will continue to do that. Just don't get stuck on the past decisions in moving forward into the future

Love, deb

 
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Old 06-24-2012, 07:06 AM   #19
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Re: Rant: Useless paid help

Dear All4Mom,

I thought of a few additional comments and didn't now where to post them so I am posting them here, some about NH and some about home.

You briefly mentioned money arrangements with your brother and a poster (I think it was Beginning) made a comparison of the costs of home versus NH.

I think that was a very good point and want to add that there are many places where you can stay on a monthly arrangement rather than make a lump sum investment. I pay my aunt's NJ "rent" monthly and did not have to pay over an investment or buy in. If she lives long enough to run out, she can convert to Medicare. I don't know what the places are like near you but it is worth asking.

Also, I am wondering what it is about the places in your area that you have found awful (other than she felt that they did not customize her care enough). Do you just feel the idea of a nursing home in general is awful, because it is an institution, or are these places, for some reason, particularly bad. What are their star ratings? If they are 4 or 5 then they must live up to certain standards.

If the appearance is gloomy, even if your Mom cannot really perceive it, you could usually "spruce up" the room about with light, color, plants and mementos from home even it just makes you feel better. If it is the food, you can always bring things from home to vary it, for the little that she can eat. If it is the noise, which I think I remember you said was very difficult for your mom, could you try to make arrangements with them, unique to her, for helping to keep her setting quiet?

Gabriel mentioned that any drug course requires a certain amount of time to gauge the effects. I just wanted to second that. I know with her type the effect may be limited, but it might still be worth it to try, in a geri-psych unit or hospital. I understand that is not your first choice but it might have to be a last resort.

Lastly about home care. Working in isolation can be difficult and Home caregiving is sometimes more stressful than working in a facility, especially is the patient is agitated, because there is no one else there, no others to talk to, no one to ask for help or an idea if they're not sure what to do, plus plain old tedium sets in. If there is a crisis (patient starts screaming for you for example), that is very hard for an isolated caregiver to deal with. A full day might just be too much for any one person, in the isolation of a home and with a difficult patient. Have you considered splitting the day among two and letting the hours overlap for the times when bathing, feeding, etc. might be too much for any one person.

I know you are having trouble finding even one, but it might be easier to find more than one if it is for a shorter period of time per day.

Just some thoughts

 
Old 06-25-2012, 02:57 PM   #20
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Re: Rant: Useless paid help

Ya'll are wonderful; thanks for all the valuable advice and creative ideas.

Honestly, I know Mom can make for a long day, but it had never occured to me to break it up between two caregivers. That could solve another problem, which is burning my bridges behind me; I tend to caregiver-hop, wanting (naturally) perfection, but then the so-so one may not still be there when and if I need her. Our current is not a CNA and, taking your advice, I have LOCATED an agency that employs CNAs, but the current is OK and is able to "take" Mom as well as apparently assist with all ADLs (she hasn't dropped her); now I wonder if I shouldn't just settle for this one rather than take a chance on a CNA!

As for hospice, it's true that each chapter operates independently; they seem to have a lot of freedom in that respect and are not governed by one umbrella organization, at least as I've been told. We have only ONE hospice serving our area (it's a small town) and, no, they do NOT allow "artificial feeding." As I've posted, they rejected my father when he applied because he was receiving TPN due to a gastrointestinal cancer; he lived about a year on that quite happily, whereas hospice would've immediately withdrawn it.

I realize that many love hospice and many others claim to enjoy their services for months or years, but my experience with our LOCAL hospice is that most are gone in a week or two (I'm presuming due to overdoses of morphine, etc.); it's not for us...

As for Mom's potential for happiness, it was a tough pill to swallow, but I'm realizing how limited that is now; although she's "home," she still begs to go "home." She constantly asks about her mother, brothers, sisters, and uncles (all deceased); if I say they're dead or in heaven, she's distressed; if I play along, she asks to visit them!

My own interpretation is that it's her time to go, or WAS her time to go... Hence the preoccupation (she was actually having visions of them when she was going without food and water, so in my view, they were hovering around in order to welcome her home).

Still and all, I know for a fact that she's more comfortable and peaceful here than she was there; "asking for a quiet room" was not in the cards; it was a noisy, crowded, and rather raucous place... I think that's why my brother so enjoyed it! Even he has to admit that she's better behaved (fewer meltdowns/catastrophic reactions) and sleeping peacefully through the night MOST nights. She's as "happy" as she can be at this point.

The nursing home was a three-star; the other one in town is a one-star (that is, SHOULD be shut down; people die with horrible bedsores, from dehydration, etc., regularly there).

We have some five-stars in the area (miles away). Mom was in one for her FIRST rehab, and was nearly kicked out (they made it clear she was "disrupting" the others, so I pulled her; they then refused to take her back). All other five-stars, and even four-stars, have rejected her based on her unruly record alone.

I will NOT put her in less than a four-star again, and I do believe that home is best for us, although it was scary at first (I alone am responsible for her JPEG tube feeding/maintenance).

As for medical care, I've received several glowing reports about an in-home medical care service, so hospice is NOT the only alternative to either SNF or traveling to appointments.

Brother? Well, he "visits" when he's good and ready (once a day, but at no predictable time; keep in mind that he has NO SET SCHEDULE, unemployed, as is his entire family). He is on strike, or pouting, or retired, or whatever you want to call it, but he is NOT going to offer me respite! On the other hand, he hasn't objected to my spending Mom's money on caregivers, so I'll simply have to take extra hours for my own R&R. Even so, it galls me that he might inherit half the money (whatever's left, if anything) while doing only 1% of the work (his wife does 0%). I may let it go or may see a lawyer when/if I get the time!

Thanks, all, for your support; what an active board, and what a great group! Appreciate you.

Last edited by all4mom; 06-25-2012 at 03:06 PM.

 
Old 06-25-2012, 09:46 PM   #21
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Re: Rant: Useless paid help

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.

Love, deb

 
Old 06-26-2012, 09:20 AM   #22
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Re: Rant: Useless paid help

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.

Hugs,
Nina

Last edited by ninamarc; 06-26-2012 at 09:21 AM.

 
Old 06-26-2012, 10:17 AM   #23
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Re: Rant: Useless paid help

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?

Thanks, everyone, as always.

 
Old 06-26-2012, 11:29 AM   #24
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Re: Rant: Useless paid help

"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?

 
Old 06-26-2012, 02:08 PM   #25
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Re: Rant: Useless paid help

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.

Love, deb

 
Old 06-26-2012, 04:27 PM   #26
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Re: Rant: Useless paid help

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.

 
Old 06-26-2012, 10:09 PM   #27
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Re: Rant: Useless paid help

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.

Good luck,
Nina

 
Old 06-26-2012, 10:18 PM   #28
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Re: Rant: Useless paid help

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

Love, deb

 
Old 06-27-2012, 09:50 AM   #29
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Re: Rant: Useless paid help

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.

Regards,
Nina

 
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