I'm pretty new to this "hired caregiver" thing, but I MUST work and keep my job (boss has let me go part-time as it is), and brother -- still miffed that I pulled Mom out of what would've been long-term in the SNF after she was d/c from rehab -- is visiting now all of ONE hour a day (be still my heart), so needs must hire help. I had a total of FIVE lined up before she was released; one by one, these private caregivers (most of whom wanted to be paid in cash under the table roughly the equivalent of my take-home pay, and I'm nearing retirement) flitted away to take other jobs after promising to wait on Mom. So I decide that route is unreliable and use agencies. My mother is 180 lbs. and a huge fall risk: the first woman they sent was maybe 5' and 100 lbs. and had no clue how to assist with ADLs. The second was a smoker who had to run out for smoke breaks every five minutes. The third (or so said my mother, and how do I know whether or not to believe?) entertained her boyfriend on the side porch while leaving Mom alone indoors. The fourth seems nice enough and is hefty enough to handle Mom, but she TALKS TALKS TALKS TALKS and drives us both crazy (and I'm with her only as she's coming and going). They all seem obsessed with finishing some task I've started (emptying the dishwasher of clean dishes or dryer of clean clothes) and putting it all away in the wrong place so I must conduct a search-and-rescue of these items and put them where I keep them, thus doubling my work. None seems to know how to bathe/shower a person properly. Few seem comfortable with toileting her OR humoring her dementia-related symptoms, although all claim to specialize in this. AND they cost a fortune (literally). What do you all do for respite; where do you find good help? Ah, feel better!
The following user gives a hug of support to all4mom: slenderella (06-21-2012)
Is there another agency that you an use? Obviously the one you have now is not sending out qualified individuals. Yes some agencies are better than others. Keep looking because the right person is out there somewhere!! Hang in there and keep looking...
You probably should ask for another home care co. Ask them if they have experienced CNA people for dementia patients. Some home care co. has training for dealing with dementia. Naturally the caregiver wants to do your work because it is easier than taking care of your Mom!
Some home care co. does tell you they know how to give the person showers and etc. You need to find the professional co. for experienced CNAs or even independent experienced CNA (certified nursing aid.) It is a good idea if you hire at least one CNA and the other caregivers can follow the CNA.
Sorry you are going through this and though I hate to say this... but sometimes you cannot really find the help as good as you want it.
I tried both routes for my aunt - off the books and agency-based - and I am sorry to say but I did have success in either arena.
Off the books proved too unreliable for us - I needed to be sure that at least SOMEONE would actually show up, and only the agencies could ensure that for me. They always did ensure that SOMEONE showed up.
The ones from the agencies often spent half the time trying to convert to off the books! Often I was disappointed in their lack of professionalism, other times there would be someone professional and she just wouldn't hit it off with my aunt and then she'd want someone else. The one she loved the most took blatant advantage of her (I think your mom is beyond that point tho) including money-wise.
I ended up putting nanny cams and that is something you could do so you can look in on her during the day.
Sometimes IF the caregivers KNOWS that she is being watched she will stay on her toes. I always told them up front even tho by law where I live in a private home you are not legally obligated to do so, because my goal was not to catch them goofing off but to encourage them to do a good job.
I could check the live video stream (no sound, just picture) from anywhere where I could get to a browser to make sure things seemed OK.
You can also most definitely instruct them to NOT empty the dishwaster and to remain quiet; that is not too much to ask. You can relay your detailed requests through the agency and repeat them in person as needed. Problems like that might just need a 'get acquainted' period to be worked out, although it is always a bit awkward having someone else in the house.
I think if they are not capable of / comfortable with the basic skills you should report them as well; a reputable agency would want to know. If the agency is overselling their skills you should complain about that too.
Obviously keep trying different agencies, you might just "hit on the right one."
But it is quite a task.
And even if you do find a "right one" keep the other agencies as backup in case there are emergencies along the way!
Plus, it is very expensive and at no point does anyone else kick in the costs (of course there are legitimate ways for home caregiver to get paid from the person but I mean where I live at no point does Medicaid pay for it; it is always private pay). My aunt had money to pay it but otherwise, as you mention if not it basically takes your whole income to pay for it.
Whether it is fair or not, you cannot expect the help of others; especially if he did not buy into her coming home, I think it is not reasonable to expect your brother to carry much of it.
I don't know your financial arrangements (if your mom pays, family pays, or you pay) but if your mom is not paying, you could always ask your brother to contribute but since it was not his preferred solution he might push back on that.
To be honest I found the paid help pretty useless and not affordable, and when you need it daily or more than a few hours a day, the cost - wow!
All of these are some of the reasons I am glad my aunt is in the NH. She gets better care than I ever could ensured for her at home, and at least I have the assurance that if she runs out of money she can stay where she is.
I know you really want to keep you Mom home and that her needs are unique, but all I can suggest is keep looking and investigate every resource to find the help you need.
Quote:
Originally Posted by all4mom
I'm pretty new to this "hired caregiver" thing, but I MUST work and keep my job (boss has let me go part-time as it is), and brother -- still miffed that I pulled Mom out of what would've been long-term in the SNF after she was d/c from rehab -- is visiting now all of ONE hour a day (be still my heart), so needs must hire help. I had a total of FIVE lined up before she was released; one by one, these private caregivers (most of whom wanted to be paid in cash under the table roughly the equivalent of my take-home pay, and I'm nearing retirement) flitted away to take other jobs after promising to wait on Mom. So I decide that route is unreliable and use agencies. My mother is 180 lbs. and a huge fall risk: the first woman they sent was maybe 5' and 100 lbs. and had no clue how to assist with ADLs. The second was a smoker who had to run out for smoke breaks every five minutes. The third (or so said my mother, and how do I know whether or not to believe?) entertained her boyfriend on the side porch while leaving Mom alone indoors. The fourth seems nice enough and is hefty enough to handle Mom, but she TALKS TALKS TALKS TALKS and drives us both crazy (and I'm with her only as she's coming and going). They all seem obsessed with finishing some task I've started (emptying the dishwasher of clean dishes or dryer of clean clothes) and putting it all away in the wrong place so I must conduct a search-and-rescue of these items and put them where I keep them, thus doubling my work. None seems to know how to bathe/shower a person properly. Few seem comfortable with toileting her OR humoring her dementia-related symptoms, although all claim to specialize in this. AND they cost a fortune (literally). What do you all do for respite; where do you find good help? Ah, feel better!
All, In a way I agree with Suzy. In the end, the home care service 12 hours to 24 hours is expensive - much more than the NH. The NH covers lodge, food, caregiving, activities and laundry and etc. A private home needs to pay the caregivers salaries which is almost more than the NH AND also the groceries, electricity, water, gardening, cleaning,...
The management of caregivers is also a headache. The caregivers come and go and they want to have a day off here and there... Some are experienced and some are naughty... We ended up with 4-5 caregivers and it was much more expensive than a NH. A good caregiver usually has CNA and is more expensive.
We were also more long-distanced so it was not economic and convenient.
Economically it is better in a NH. If it is just a short time staying at home like home hospice, it is OK.
I know you don't want to have a NH and now this bad NH kicked her off and so she has bad record. I suggest that you find an attorney to work it out so Mom can have a place to go in case she needs to.
I understand the difficulty - so sorry that the bad NH was not helping.
All, In a way I agree with Suzy. In the end, the home care service 12 hours to 24 hours is expensive - much more than the NH. The NH covers lodge, food, caregiving, activities and laundry and etc. A private home needs to pay the caregivers salaries which is almost more than the NH AND also the groceries, electricity, water, gardening, cleaning,...
The management of caregivers is also a headache. The caregivers come and go and they want to have a day off here and there... Some are experienced and some are naughty... We ended up with 4-5 caregivers and it was much more expensive than a NH. A good caregiver usually has CNA and is more expensive.
We were also more long-distanced so it was not economic and convenient.
Economically it is better in a NH. If it is just a short time staying at home like home hospice, it is OK.
I know you don't want to have a NH and now this bad NH kicked her off and so she has bad record. I suggest that you find an attorney to work it out so Mom can have a place to go in case she needs to.
I understand the difficulty - so sorry that the bad NH was not helping.
Hugs,
Nina
I actually just got an urgent call from home; Mom is yelling and screaming and raising a ruckus with the CG, just as she did in the NH... So much for my theory that it was the NH making her upset! Now brother is proven right, and I'm out of options... She's gotten worse every day (today is the two-week anniversary of coming home) after being GREAT the first week; last night I was awakened four or five times by her yelling despite all the sedating drugs in the house! What can an attorney do? NHs have the right to refuse "disruptive" patients or at least the right to send them away to geri-psych which, at 93 and multiple health problems plus a PEG tube, I don't want her to go through. I won't even be able to keep PAID caregivers now! She knocked the tube feeding right out of my hands AND took a piece out of both of us (scratching and pinching) when we tried to hold her back.
HELP!
We've been in five hospitals, including the university teaching hospital that has a center on aging/memory clinic attached, and all I've gotten is a shrug and "it's just dementia." Well, clearly it's more, since MOST dementia patients can exist either at home or in a facility; my mother is out of control.
The following user gives a hug of support to all4mom: ninamarc (06-22-2012)
Did you try to take off antivan? Deb suggested that it is not a good drug for your Mom.
Deb mentioned some time ago that some geri-psychiatry ward can help finding her the right sedatives. I don't know how it works. I think Deb wrote about it in her old post.
I meant that the attorney/free legal aid may be able to explain to the NH that this past NH had some issues and maybe he will find a way to get help. Or ask the state help for this kind of thing. I am just saying get help from the resources. Social service and etc.
What about the doctor? If she does not sleep, she would get psychotic. Sometimes you may just have to call ER to get her under control.
I also hate to say this but feeding tube for sure is bothering her so she gets more angry.
You may want to consider at some point that if she will get better without the tube for a short while? It is indeed a hard thing to think about. Try to find out why she is out of control - did the CG try to do the tubes? Did the CG argue with her? Did the CG hurt her waist by lifting her up? Usually it helps to find the causes as well.
I also hate to say this but feeding tube for sure is bothering her so she gets more angry.
You may want to consider at some point that if she will get better without the tube for a short while? It is indeed a hard thing to think about. Try to find out why she is out of control - did the CG try to do the tubes? Did the CG argue with her? Did the CG hurt her waist by lifting her up? Usually it helps to find the causes as well.
Take care,
Nina
She's angry because I'm not there! It's nice to be needed and all, but this is ridiculous! If I never hear my name called again, it will be too soon (that's what she does all night, too)... As for the PEG tube, that's another thing: she keeps insisting that the CG (and we, her children) prepare her this and that -- she CAN take a little by mouth "for pleasure" -- like we're short order cooks or a restaurant, insisting that she's starving, then she eats two bites!
I will concede that the woman has not had one moment's happiness since the tube was placed; it's all healed, I handle it like a pro, using it is no problem, but she seems "disoriented' and constantly invoking dead relatives, and I am nearly at the point of wondering if her quality of life now is worth the effort.
I keep looking for a "fix"; tried to change this and that about the interactions or routines in the NH and THOUGHT I had solved the problem by bringing her home, but clearly either this CG bothers her (she bothers me) or she's simply not comfortable being in this world anymore; no drugs help, nor coming home.
Of course, there IS no "treatment" for bv-FTD; so say all the books I've read...
I can only tell you what I would do, which may not be what you would do under the circumstances. For whatever it's worth:
1. Apologize to brother. You made choices out of love and a sense of responsiblity, but the situation is deteriorating. You could use his help and support. It would be nice to preserve your relationship when Mom is gone.
2. Talk to you Mom's primary physician. Request that she be admitted back into the hospital as soon as possible for evaluation. An ambulance will probably be necessary. Whether it's to adjust her feeding tube, address her behaviors, or other medical condition, I suspect they will not be surprised if you call to report that her condition with home care is unstable.
3. Once she's back in the hospital, the hospital social worker will work with you on nursing home placement. It won't be easy with her medical records and it may not be your first choice (you aren't forced to go with whatever home they recommend, within reason). Involve your brother and let go of some control here. He might be a little better equipped to deal with end-of-life issues and with nursing home facilities since the last one was willing to keep her if he was her decision-maker. It may even take her back if he talks to them.
You mentioned once that you didn't think she needed a nursing home's skilled nursing care. When DH was evaluated for nursing home care, I was told that the test for eligibility for nursing home placement is whether the patient can live independently, such as by making their own meals, going to the toilet, and living safely (no wandering, knowing to turn the stove off, being able to take medications on time, etc.). Having a family member who can care for them doesn't change the fact that the patient can qualify for placement.
4. Ask the doctor to certify your Mom for hospice care. At 93 with her medical conditions, there shouldn't be any question at all that she is eligible for this benefit. In 6 months if necessary she can be recertified. This will add another layer of nurses to visit and check her status, support to interpret her medications and medical needs to make her as comfortable as possible, etc. You aren't forced to take their recommendations, and it provides someone else to oversee her medical condition and support the family.
Your job at that point is to be the loving daughter that you clearly are, whether you are visiting her (and then going home to sleep at night in peace), checking with the facility and doctors on her care, or otherwise supporting her care-plan within the nursing home to make her comfortable.
No one expects you to be SuperWoman. I know....I've been there, including working while being a caregiver. We used day-care as long as possible with a home aide. The only way we kept our aide was by over-paying her by a lot (not counting gifts, lots of time off, use of a car, etc.), saying thank-you every day that she showed up, and making her a member of our family. It's a horrible job. Even with a wonderful aide, the nursing home was eventually our family's solution. DH gets better care there than I could ever have provided at home. There are qualified aides and a nurse around the clock, so someone is always there for him when he won't sleep or is having emotional swings. There are more people coming and going, so his life isn't as restricted as it was at home. A doctor or physician's assistant swings through every day or so, not counting the podiatrist, facility dentist, physical therapists and other medical staff. They do medicate the patients more than I would like, but at this point I see it as giving my husband some peace from the terrors of his mind. There are other volunteers, as well as religious representatives who visit, so the patients can be as busy or as quiet as they need to be.
This may not be the right solution for you and your Mom, so take it for whatever it's worth. My heart goes out to both your family and your Mom.
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 no time did we agree to leave her in there FOREVER... However, he decided unilaterally at some point that this was his preference, so now he's reneged on our long-standing previous agreement, albeit unspoken, which was to work as equal partners to keep Mom at home, then splitting whatever $ remained equally. As for the last NH, they dictated that our only shot at getting her back in there was for HIM to be named LEGAL GUARDIAN; sorry, I just can't swallow that. Not only do they have no business issuing such an edict, it's only because they feel they can steamroll him and do *anything* to my mother -- give any drug, put her in any wing, send her to any geri-psych concentration camp. My brother is dodging bankruptcy, not one member of his family of four works, and "guardianship" here is a package deal with "conservatorship" -- that is, control of the money, of which my mother has lots (for now). No way, Jose! I would have to contest (it's a juried trial in my state; mother must be present, too), and I would win just on the basis of my proven financial responsibility, not to mention that I've been sole caregiver for years and years now... As for "just any NH taking her," I would almost opt for removal of the tube and hospice first. Our state is one of the worst for nursing homes, and no "good" one will touch her. My whole point is: we didn't go to ALL this trouble to keep her alive, sacrificing all we did and fighting tooth and nail for her survival and even that PEG tube, just to dump her in an awful nursing home for the rest of her days. If I'd known that would be her fate, I might've opted not to place it, and I think she might have, too. What is the point? She's 93; why extend her life another 1-2 years just to suffer alone like all those poor people in there, abandoned and crying every night (I know; I've been there and heard them) to "go home"? To suffer who knows what kind of treatment at the hands of ignorant aides (I know; I've seen that, too). For all I know, her problem NOW may be the caregiver; perhaps she IS only happy with one of us there. All that said, we don't even qualify for our local hospice with a PEG tube in place, so even that drastic step is not an option...
It's seldom so black and white. You could, for example, agree to be co-conservators, which would not be a contested proceeding. Your family could also try to repair the relationship with the facility that was ok. Since they indicated that they'd take your Mom back if your brother was in charge, it sounds like your Mom's condition wasn't a problem for them.
Trying to save Mom's money when you're at your wits' end doesn't seem to make sense, especially after you do the math. Compare the nursing home cost minus home health care aides and the cost of necessary supplies (such as incontinence products, laundry and food, which could be included in the nursing home fee) to get your net savings for keeping her at home. This net savings would then presumably be divided by two. Even if you multiply your share of this saving by the months that your Mom may have left, the final number may not be worth your own sanity, job performance and health....aside from the question of whether the at-home care that you can get for her is better. I understand that these are hard issues, but do you really believe her life expectancy at age 93, with a feeding tube and dementia, is in years?
I don't think you'll find much sympathy for the view that nursing homes and geriatric facilities are generally awful geri-psych concentration camps, or for the view that dementia patients crying out to go home are suffering. Many patients could be in a five-star resort, and would still be crying to go home as a result of the dementia. I'm certainly not saying that nursing homes are happy places, but there's also a lot of wonderful care supplemented by family involvement. For those of us like Gabriel/Deb, Nina and myself who have family members in nursing homes, I'm sure you don't mean to disparage the care that we have obtained for our loved ones.
Hospice is not a drastic step, by the way. It's a support system to help patients at the end of their lives to be as comfortable as possible. It provides a layer of additional service, but doesn't replace a patient's own physicians. Do you only have one hospice provider? It sounds inconsistent with Medicare's guidelines for hospice care that your hospice provider would not agree to let your Mother keep her feeding tube!
I apologize if my posting sounds argumentative, since it's very clear that you're under tremendous stress. My goal was to try to give you support and to offer ideas at a time when you are feeling overwhelmed. Hopefully you have some friends and other family who can help you too, since there will be more ups and downs to come.
I think hospice is something your can try. But make sure they cover feeding tube. For cancer in hospice, medicare covers food IV and oxygen and etc. My late MIL was in the hospice for cancer and she had food IV because my FIL thought it was cruel without any food iv.
The last time we talked to my FIL's home director, he was saying if we do the tubes and etc., there is no hospice. But I think he is talking about the NH and the condition that if you install the tube actively, it is not hospice yet.
Once your Mom is stable with the feeding tube, you should ask the hospice if they accept the tubes. There is a difference about the beginning and the ongoing process. Of course if you choose to take it off, Mom can go for hospice for sure. Like what Beginning said, some hospice must be able to take feeding tube - you just have to find the place to do it - at home or in the skilled-care home. Where my FIL is doesn't do feeding tube or food iv either.
I see that your brother and you do have different views but he seems to have money problem. Also I can tell that you have a more drastic view about nursing homes. I think any state must have a good nursing home but it is a matter of money and where it is...
It is in your hands, and I hope you can find a CNA to help out or find some good sedatives (call the doctor to find out.)
I am sorry you are in this stressful state and Mom cannot be helped properly. I am sure you have done the best. I think you need to check out all the resources.
For now, find out how to have home hospice with the stable feeding tube and go from there.
I live in Ohio, and we use " Home Instead" caregiver agency. have a wonderful caregiver Mary! It's a franchise, and all over the US. Bonded, 50 states background checks, and so on. Just wanted to throw it out there. I know all too well how we all want the best for our family members and their care.
Mom is in a good facility and there are wonderful facilities as well. Mom was a one woman wrecking crew when she went into her current facility. Add in my Dad's antics and they were definitely a force to be reckoned with. They had both been kicked out of the previous facility. They were not doomed to the worst of the worst but ended up in a five star facility. It's not close by but in the next city. It's a 40 minute drive on a good day. But it was what Mom and Dad needed at the time because of the locked unit coordinator who understood dementia behavior and how to deal with it. Yes, Mom did go through a Geriatric Behavioral Med Unit and she is on a psych cocktail. I would never send her to just any psych unit but I did send her to the right unit. Yes, there are anti psychotics on that list of meds with black box warnings... but so far it has brought us, Mom especially, three years of contentment. Yes, Mom is now on Hospice. I have lost the wonderful Rem Coordinator that got Mom to where she needed to be, but I have a team of Hospice professionals to fall back on.
All, you are right, Hospice will not accept someone with a feeding tube. They are for palliative and comfort care, not aggressive treatments... and feeding tubes are aggressive treatments. Even if Mom qualifies the feeding tube will disqualify her. The dramatic step by going to Hospice is having to give up the PEG tube. That is a decision you have to make.
Apologies are not necessary for something you have intentionally done wrong. Sometimes they are needed just to clear the air, to say I know it could have all gone a little different. They can be the first step to patching up a difficult situation even if you are not at fault. I'm sorry it has all turned out this way and need your help is a good way to start. You are sorry it turned out this way
Basically you have boxed yourself into a situation that is impossible. If you stick to all your guns then there is little chance of change. You have been with Mom through thick and thin. Now in her late stage she depends on you to be there and is going to want you there. Those years and years of caring for her is exactly why she expects you there all the time. At her stage I doubt this is going to change. No in home CG is going to be you. Yet you can not clone yourself and continue working with half of you and be there for Mom with the other half of you. Something has to give for you. Hit and miss trial and error of medication, changing it after short periods of time repeatedly, is not a good way to go about finding the right medications. It takes a week to 10 days to find out what effect something will have. It may take a geriatric psychiatrist to make a different in Mom's level of contentment... if it is possible at this point. Please don't give up on finding Mom contentment. It was not easy for me to leave Mom at the Geriatric Behavioral Med Unit. It was not my first choice. But that was the ONLY way we could find Mom a level of contentment. It turned out to be a wonderful place. The Geriatric psychiatrist was AMAZING! The nurses were wonderful. They took the time to explain what was going on and answer my questions. It was not a dark hole of screaming patients. It was light and airy and filled with compassion. Not at all what I expected but exactly what I needed.
What are the other options you have as far as care facilities? What other options do you have as far as agencies for CGs? Investigate all your options with a different eye. Don't look for the horror that you expect to find. Look for care staff that is compassionate and know how to deal with demented behavior. If it is not in your back door that is ok. Don't expect the CGs to be perfect. Tell them exactly what you expect. Tell them not to do the house work and just sit with Mom quietly and give her what she wants. They don't know unless you tell them. If you find a good one that can put up with your Mom, even if Mom is not happy that it is not you, then stick with that one. Stay with the trazadone and increase the dosage as necessary. SSRI antidepressants have also been proven effective. You may have to give up on your dream of the perfect ending. You may be able to take the edge off her agitation but not make her the calm Mom you want.
You may have to change some of your expectations and preconceived ideas to find a solution.
Love, deb
The Following User Says Thank You to Gabriel For This Useful Post: Beginning (06-23-2012)
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.
Quote:
Originally Posted by all4mom
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 07:41 AM.
The Following User Says Thank You to Suzy0513 For This Useful Post: Beginning (06-23-2012)
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
The Following User Says Thank You to Gabriel For This Useful Post: Beginning (06-23-2012)
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!
Quote:
Originally Posted by Gabriel
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
The Following User Says Thank You to Suzy0513 For This Useful Post: ninamarc (06-25-2012)
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.
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.
