Medical Forum / Diseases and Disorders / Alzheimer's / August 2004
Pointers, suggestions, tips...?
|
|
Thread rating:  |
Jef. - 08 Aug 2004 05:31 GMT A little history, a little weird local news, and a naked request for information:
My father is 82, recently diagnosed w/ AD and has been in a nursing home for the last few weeks after being released from the hospital. (His landlady found him in bed, fully clothed, very dehydrated and rambling...) The hospital discharged him after a 4 day stay, saying basically "Well, we're done. Here's your dad. He's not safe alone, so you'll need to make some arrangements..."
He barely remembers the hospital visit, and has it sort of mixed up with his present stay in the nursing home. The time has run together for him. He talks about going back to his apartment, and we've explained how that's not an option, as he's not safe there. He lived independently and was doing fairly well, about an hour's drive away from us. Things have really snowballed in the last several weeks.
It's no longer safe for him to be alone, as he wasn't remembering to eat, pay his bills, change his clothes, etc., etc.. We have been scouring our area for care facilities where he may be safe, looked after, fed and medicated properly, and have been terribly disappointed in what's available.
The nicest-looking and closest assisted living/dementia unit operation in the area (a Sunrise operation) had moved to the top of our short list because it seemed so clean and well-kept. We had the grand tour there last week and were impressed. Yesterday's Washington Post ran an article about police responding to a 2:00 AM hang-up 911 call hat came from the place, only to discover no one was answering the night doorbell, the front door, the telephone or even responding to their patrol car's siren. They eventually found an unlocked door and let themselves in.
Once inside they swept the place and found a hospice patient on the floor, calling for help-- she'd fallen from her bed. Another patient had a clogged catheter and had called 911 in frustration after not getting any answer from her in-room call button. The cops found all 3 staff members on duty FAST ASLEEP!
Needless to say we aren't sending Pop there...
We've found a nice group home that has great staff-to-resident ratio (1 to 4), and a good reputation, and are trying to make arrangements to get him in there. I wonder how some of you have handled the transition of moving a loved one from the home or apartment they've known for so long, into somewhere new. He is resistant to the idea, and thinks he can just "...get a place of my own."
Got any hints, tricks, tips, ruses, strategies that have worked fairly well for you? I've tried to be straightforward with Pop all through this, and haven't wanted to trick him, baby-talk him, bullshit him or candy-coat anything. He's cognitively aware enough to know he's not quite right, but is cranky and testy when we try and explain things to him or ask him questions. He's just not capable of processing the information in a manner that really allows him to deal rationally with the situation, and we're sure he'll feel angry or conspired against when we try to move him to the group home.
I'm anticipating traumatic response and major hassle. I'm dreading it, and am looking for any feedback that you folks with more experience may be able to give me.
Thanks for your attention, and God give us all strength.
Jef.
Tumbleweed - 08 Aug 2004 08:04 GMT <snip>
> We've found a nice group home that has great staff-to-resident ratio (1 to > 4), and a good reputation, and are trying to make arrangements to get him in [quoted text clipped - 11 lines] > allows him to deal rationally with the situation, and we're sure he'll feel > angry or conspired against when we try to move him to the group home. You need to lie, or as its called here use 'loving deception'. Sorry to be abrupt, but fact is, your father is approaching the reasoning skills of a 2 year old, and you wouldnt discuss with a 2 year old what they should do for medical treatment, you would work out what was best for them and do it. As you point out; "He's just not capable of processing the information in a manner that really allows him to deal rationally with the situation"; so therefore you cant rationally talk with him about it, you need a subterfuge to get him in. I believe the experience here of almost everyone is that however much of an issue there was getting their LO in a home, once they are in they settle down pretty well. Even people who were initially very hostile to going into a home.
> I'm anticipating traumatic response and major hassle. I'm dreading it, and > am looking for any feedback that you folks with more experience may be able > to give me. All that is quite likely. Getting your father in under some pretence is probably best from what you say, the pretence depends just how bad he is. It might be a home for the night whilst his house is redecorated, a bed for the night whilst the doctors check him out, or some other explanation that he will accept. You are going to have to "trick him, baby-talk him, bullshit him or candy-coat" the situation.
My father was bad enough that whatever explanation you came up with, if he didnt accept it you could wait a minute (I mean that literally) and try another one, maybe that would work for you? My father still caused a major fuss once in but didnt have the ability to reason how to get out. After a couple of weeks he settled down and when he was switched from special hospital to care home didnt even notice he had been moved.
Sounds and maybe is harsh but there was no other alternative, he is much better cared for now that when he was at home because the family couldnt provide 24x7 care.
 Signature Tumbleweed
email replies not necessary but to contact use; tumbleweednews at hotmail dot com
Dennis P. Harris - 08 Aug 2004 09:48 GMT > Got any hints, tricks, tips, ruses, strategies that have worked fairly well > for you? I've tried to be straightforward with Pop all through this, and [quoted text clipped - 4 lines] > allows him to deal rationally with the situation, and we're sure he'll feel > angry or conspired against when we try to move him to the group home. the most common and least traumatic method seems to be moving the loved one's favorite pictures, chair, books, and other things that make the place "home" to the new place while you take the patient for a drive that ends, of course, at the new place. you take him to his room and tell him he'll be staying there for a while "until he gets better".
yeah, he'll be upset, resist, and want to go "home". once you've moved him, get him distracted and then leave and give him several days *without a visit* to get acclimated. it may sound cruel, but it's crueler to keep visiting and reminding him of his former life, until he gets used to his new environment.
he can't reason. his reasoner is broken. his brain is damaged. it does no good to talk about it in advance or attempt to have his help in deciding things, and it will only upset him. this is where you learn to use what we call "loving deception", because it reduces the trauma involved.
many folks quickly get used to the new place, like not having to deal with things like preparing meals or housekeeping, or all the steps required before bathing. after several weeks they become accustomed to the new routines and forget that they were living somewhere else.
Evelyn Ruut - 08 Aug 2004 13:34 GMT > A little history, a little weird local news, and a naked request for > information: [quoted text clipped - 58 lines] > > Jef. Hello Jef,
Welcome to the club nobody wants to join. Most of us here are caring for a relative with some form of dementia, either at home or in a facility of some kind. It sounds like you are doing a good job and trying your best to help your dad.
Above you say... "I've tried to be straightforward with Pop all through this, and haven't wanted to trick him, baby-talk him, bullshit him or candy-coat anything." We tried that too, and found that it doesn't work very well, just as you apparently have.
In the first place, their reasoning is affected with this disease, because it is an actual organic brain disease that results in real measurable physical changes in the brain itself. So if you try to treat your dad like he is perfectly normal and able to understand, remember, reason, and think like a normal person, all you will do is frustrate him and yourself too.
Normal rules don't apply anymore. YOU have to do the thinking for him, and get used to the idea that he isn't going to be able to absorb things like a normal person anymore.
You may be able to work with him better and make his life better by the very deceptions you are trying to avoid. Now before you get upset and stop reading, let me say I took care of my mother in law for over three years here at home, and finally we placed her in a nursing home due to falling issues. She has NEVER been able to understand her condition, why she is where she is, for the entire time. We have explained it to her patiently and kindly, over and over and over hundreds of times. She just can't retain the memory.
She thinks (from that day to this) that she could just "go home" and is unaware that she would get exactly into the same condition she was nearly 4 years ago when we literally rescued her,.... half starved, filthy, confused, having paid bills twice, been victimized by home improvement scammers, and having forgotten how to prepare food for herself anymore, how to bathe herself, how to care for herself....even to dress herself at this point. Only now it is a lot worse than it was at that time, because now she is incontinent and can't walk 10 feet without falling on the floor.
All of us here wanted to be honest and not bullshit our loved ones. But you will soon discover that there really is no other way. We call it "loving deception" and it is truly something that comes from love. It is just as respectful to that person in their present state of mind, as total and complete honesty was, when they had an intact mind. You need to understand that you are playing a different ball game now. The rules have changed. You need to make the decisions, take care of your dad and GET him to a place where they will take good care of him as professionals. The means of doing this doesn't matter, because he isn't going to suddenly "get it" and go along. That time is past.
Whatever you tell him, please feel no guilt. The goal is to keep him happy and content, even if it is only just for a minute. Because the only thing your dad has right now is this very minute. Whether you tell him the cold hard truth, or some fluffy lie, he won't remember either one. What will persist is if you upset him, or put his mind to rest somehow.
You absolutely CANNOT bring your dad into your reality, you can only work within his own reality. That sometimes means feeling like a total jerk for telling him some story that will set his mind at ease. It is a transition in OUR way of thinking that is done for their own good and peace of mind. You can handle doing that, more easily with an intact brain, than he can handle the upsetting truth with an impaired brain.
Oh, and about the facility that was caught with the employees asleep.... we had that happen in one place around here too, and guess what? There was a shakeup, some firings, new direction, new people, and now it is the very best facility in our area. I know, because that is where my mother in law is. Believe me, I have come there all hours, and she is well cared for.
I had my misgivings and doubts in the beginning from the gossip I had heard beforehand, but the new staff is wonderful and caring, and the new management is top notch. It is primarily a rehabilitation hospital with an alzheimers wing, so the emphasis is a lot on therapy to help my mother in law retain as much of her coordination as possible.
Best of luck in this new situation. There are books you can read... for instance "The 36 hour day" and there are others. There is a website associated with this newsgroup. Here is the link. http://www.muggsmulcher.com/kstuff/a.s.a/intro.htm You may find it helpful.
You will notice that others who have gone down this road before you have discovered that "loving deception" is ultimately far kinder to your loved one, and will go a lot further with them than attempts at brutal honesty, when they just don't understand reality anymore.
You sound like a caring son, and I wish you the best of luck in your endeavors. Don't hesitate to come here and ask at any time.
 Signature Regards, Evelyn
(to reply to me personally, remove 'sox")
Tumbleweed - 08 Aug 2004 17:25 GMT > > A little history, a little weird local news, and a naked request for > > information: [quoted text clipped - 159 lines] > one, and will go a lot further with them than attempts at brutal honesty, > when they just don't understand reality anymore. I agree, honesty got us nowhere but generated a huge amount of hurt for all concerned,and the memory of that hurt lingered a lot longer than any actual statement that was made. Seems there is a phyical reason for this, but whatever, the point, as evelyn said, is to "tell him a story he will accept that will put his mind at rest". That way, he will be at rest/happy, and you will be as well.
and just to reiterate, because its so strange to a normal way of doing things, if the first story doesnt work, use Az to your advantage, wait a few minutes and then try another one, dont refer back to what previously you said, act as if its the first time.
 Signature Tumbleweed
email replies not necessary but to contact use; tumbleweednews at hotmail dot com
Beth - 08 Aug 2004 18:02 GMT Jef, I endorse what the others have said about the breaking reasoner, fitting your explanation to something that makes sense to them, etc. Having been through it, I can tell you AD breaks all your instincts about how to do it right. Fostering independence and autonomy works in the outside world with an intact brain. No one has prepared us for the disintegrating brain. 2 points- 1 You're switching roles here and have to be the parent of the parent. It's very hard and very emotional. I think you're recognizing that nicely. But number 2 is deep down you're seeking his approval or at least acknowledgement that you are doing the right thing. If you can realize that it is not going to happen...you can save yourself a lot of grief. Hopefully you have some family support for this decision and transition. But if you don't, we're here. You're doing it right....even if you're not sure.
Wishing you the best. You'll get through it and learn for others as well. Keep us posted. Beth
Beth - 08 Aug 2004 18:14 GMT Jef, I endorse what the others have said about the breaking reasoner, fitting your explanation to something that makes sense to them, etc. Having been through it, I can tell you AD breaks all your instincts about how to do it right. Fostering independence and autonomy works in the outside world with an intact brain. No one has prepared us for the disintegrating brain. 2 points- 1 You're switching roles here and have to be the parent of the parent. It's very hard and very emotional. I think you're recognizing that nicely. But number 2 is deep down you're seeking his approval or at least acknowledgement that you are doing the right thing. If you can realize that it is not going to happen...you can save yourself a lot of grief. Hopefully you have some family support for this decision and transition. But if you don't, we're here. You're doing it right....even if you're not sure.
Wishing you the best. You'll get through it and learn for others as well. Keep us posted. Beth
Jef. - 08 Aug 2004 22:33 GMT Thank you, Beth, Tumbleweed, Evelyn and Dennis.
Your responses have helped tremendously. My father and I have always been able to talk to each other about anything and everything. I realize (but have a helluva time accepting) that this is changing, and that I have to pull a few punches, as it were-- and I'm just not used to it.
Pop always told me when I was a boy that he'd always get over being angry if I messed up or misbehaved-- because he'd love me no matter what I did-- but he'd be terribly disappointed if I lied to him. Old lessons; old conditioning... Hard to shake off.
I know the dynamic has shifted and the old roles and rules don't fit. You're also correct, Beth, about wanting to be perceived (by him, anyway) as doing the right thing and being responsible and coming through for him and making him proud of me, etc., etc... It certainly is a major factor as I plod along and try to sort this all out.
I'm so stressed out that no amount of sleep brings refreshment or renewal, and I'm dragging my a.s from one day to the next. If only we can get him situated, maybe I can take a deep breath for a change.
Again, my sincerest gratitude for your straigh-shooter replies. Nothing like getting the unvarnished news from those who've lived it.
All the best; I'll be back around. Your new friend, Jef.
Tumbleweed - 08 Aug 2004 22:50 GMT > Thank you, Beth, Tumbleweed, Evelyn and Dennis. > [quoted text clipped - 14 lines] > him proud of me, etc., etc... It certainly is a major factor as I plod along > and try to sort this all out. Once you accept that the latter will not happen, things will get slightly easier. I'm sure your 'old' dad would have wanted you to have made the right decision, not the one that pleased him *now*. Just the same as you'd do for a two-year old.
 Signature Tumbleweed
email replies not necessary but to contact use; tumbleweednews at hotmail dot com
> > I'm so stressed out that no amount of sleep brings refreshment or renewal, [quoted text clipped - 7 lines] > Your new friend, > Jef. Rose - 09 Aug 2004 09:17 GMT thisaccount wrote:
> I'm sure your 'old' dad would have wanted you to have made the right >decision, not the one that pleased him *now*. Just the same as you'd do for >a two-year old. What tears me up is these people aren't two year olds. They're adults -- sometimes they act like children and sometimes they are quite lucid and mature -- and unless we get a court to grant us conservatorship, we can't force them to do anything.
I know that my mother at age 65, if she could have looked into the future, would have said "for the love of God, put me in a senior facility and live your own life." But she's not my mother of age 65, she's who she is now, and while impaired, she's still my friend and still someone who can reason to a degree. So going against what she wants now is so very, very hard. That's why I'm transitioning slowly, I'll be starting with daycare and home care before she goes to a facility...that will make it easier for both me and her, I think.
___ "Don't worry Alba. I'd never let anyone else kill you." -- Naked Tango
Evelyn Ruut - 09 Aug 2004 12:22 GMT > thisaccount wrote: > [quoted text clipped - 14 lines] > transitioning slowly, I'll be starting with daycare and home care before she > goes to a facility...that will make it easier for both me and her, I think. Rose, I had my mother in law in daycare for almost the entire time she was with us. It was a godsend. I have no idea how I would have managed without it. It also made the transition to a nursing home a lot easier, since she was (again) used to being in group situations and being cared for by professionals.
 Signature Regards, Evelyn
(to reply to me personally, remove 'sox")
Tumbleweed - 09 Aug 2004 18:40 GMT > thisaccount wrote: > [quoted text clipped - 14 lines] > transitioning slowly, I'll be starting with daycare and home care before she > goes to a facility...that will make it easier for both me and her, I think. That depends. If she cuts up a huge fuss every single time she goes to day care (like some do, inc my father), or refuses to have help in the home (like some do) it makes things worse due to stress (especially on the carer) because the event is repeated every day or every week.
Hope it works out for you though, all you can do is try whatever you think is best.
 Signature Tumbleweed
email replies not necessary but to contact use; tumbleweednews at hotmail dot com
Evelyn Ruut - 09 Aug 2004 20:42 GMT > > thisaccount wrote: > > [quoted text clipped - 30 lines] > Hope it works out for you though, all you can do is try whatever you think > is best. Ida didn't want anyone to come and help her in the home. Ida didn't want to go to daycare. Ida wanted to go home and be independent again.
Unfortunately when your brain starts to get sick, someone has to make the decisons as to what is for your better good. You only WISH you could let them go back to a place and time where they were autonomous and able again.
We made the decisions, and she managed to adjust. Fortunately for us all, she adjusted well.
But she still wants to go home.
 Signature Regards, Evelyn
(to reply to me personally, remove 'sox")
Rose - 11 Aug 2004 09:46 GMT >That depends. If she cuts up a huge fuss every single time she goes to day >care (like some do, inc my father), or refuses to have help in the home >(like some do) it makes things worse due to stress (especially on the carer) >because the event is repeated every day or every week. Well, my mom is similarlty stubborn, that's the challenge. I don't know if I can legally force her to go into assisted living if she doesn't want to without getting a conservatorship and since she's never swallowed anything she shouldn't, wandered, had hallucinations or started a fire, I might not be able to get a conservatorship yet. I don't want to wait for a disaster to happen before she gets help. My hope is to gradually get her used to this stuff, and I'm consulting with doctors and social workers on how to do this. It's the single biggest conundrum of my life right now.
>Hope it works out for you though, all you can do is try whatever you think >is best. I figure assisted living is best, but since that's a) horrifically expensive and b) something my mom doesn't want and I don't see how I can make her do it as of yet, I'm trying like damn to get intermediate steps to work.
___ "Don't worry Alba. I'd never let anyone else kill you." -- Naked Tango
Dennis White - 14 Aug 2004 08:08 GMT > >That depends. If she cuts up a huge fuss every single time she goes to day > >care (like some do, inc my father), or refuses to have help in the home [quoted text clipped - 19 lines] > ___ > "Don't worry Alba. I'd never let anyone else kill you." -- Naked Tango I'm facing a slightly different situation. I would really like to see Evan go into assisted living, but I have also promised him I would advocate that he remain in his home as long as he can. In fact I have agreed to that in his living will, though there is no one that would ever challenge it. In an "intermediate"situation he *could* afford to have nursing care at home for awhile, but it would certainly eat up his savings far quicker than going into assisted living. Does anyone have the experience of a parent or loved one who has spent their life savings on home care and had to then rely on Medicaid to cover what they couldn't afford? Is there a difference in the availability or quality of care? I wouldn't mind it if Evan were to spend every last penny on himself and his comfort now if he could be assured being taken care of later.
Dennis
Evelyn Ruut - 14 Aug 2004 14:18 GMT > > >That depends. If she cuts up a huge fuss every single time she goes to > day [quoted text clipped - 46 lines] > > Dennis It depends. There are facilities where they don't accept Medicaid, but I have a thought about that. I wouldn't want my loved one in a facility where they would live only till their money is gone, then they would have to move again. Things like moving get harder for them as they go along, because the condition of their brain tends to worsen. New things get harder.
I placed my mother in law in a facility where people CAN pay for their care til their money is gone, then they still keep them there on Medicaid. So, there are facilities where they will take the person as long as they have some money for private pay in the beginning, then when their money is gone they remain on Medicaid. I was fortunate in that there was a very good one near me.
Some places are graduated - they start with an assisted living wing or even a separate building, then as the patients needs change they go into the next level with more care.
 Signature Regards, Evelyn
(to reply to me personally, remove 'sox")
Mare - 17 Aug 2004 01:08 GMT Hi Dennis,
snip
> Does anyone have the experience of a parent or loved one who has spent > their life savings on home care and had to then rely on Medicaid to cover [quoted text clipped - 4 lines] > > Dennis Along with what Evelyn said. Most NH's that accept Medicaid want a year or two of private pay. Well the ones you might consider for Evan. The others I wouldn't go near at all! Medicaid won't pay for assisted living at all and I think neither will Medicare. Talk to an eldercare attorney in your area so you can see what happens in your state.
Evan is very lucky to have you.
 Signature Mare mfcoleman@THEOLEmindspring.com http://www.muggsmulcher.com/kstuff/a.s.a/intro.htm alt.support.alzheimers' FAQs and Stuff Pages
Evelyn Ruut - 09 Aug 2004 04:34 GMT > Thank you, Beth, Tumbleweed, Evelyn and Dennis. > [quoted text clipped - 25 lines] > Your new friend, > Jef. Dear Jef,
Please be sure and take care of yourself. This disease will march on at its own speed whether you get yourself sick with worry over it, or whether you take it in stride. So better take it in stride, since it is a lot less stressful for you.
Remember, if YOU get sick you can't be much good to him or anyone else, either. People told me that too, and I still ended up depressed and frazzled out of my mind after a couple of years of caregiving.
Please be as kind to yourself as possible. Worry won't help, and it can hurt you a lot.
 Signature Regards, Evelyn
(to reply to me personally, remove 'sox")
Rose - 09 Aug 2004 09:21 GMT >Subject: Re: Pointers, suggestions, tips...? >From: "Evelyn Ruut" mama-lionsox@hvc.rr.com [quoted text clipped - 5 lines] >either. People told me that too, and I still ended up depressed and >frazzled out of my mind after a couple of years of caregiving. I don't think we can control our emotions without some help. We can try not to worry and to take things in stride but that I think that requires support from a counselor or support group, and requires learning new ways to cope with new situations that keep coming up.
Taking care of ourselves is vital...it includes getting support, taking breaks, having interests in life apart from the family member, and finding time for one's own doctor appointments, which ain't easy as elders need so many doctor appointments for so many things.
___ "Don't worry Alba. I'd never let anyone else kill you." -- Naked Tango
turkey in the straw - 09 Aug 2004 13:52 GMT Rose, Taking care of ourselves is vital...it includes getting support, taking breaks, having interests in life apart from the family member, and finding time for one's own doctor appointments, which ain't easy as elders need so many doctor appointments for so many things.
Oh how your words ring so close to home.I have neglected myself into the worst depression i have ever felt.I was physically sick for 2 weeks.My moms health has almost become a obsession with me.It keeps you so busy you can't take care of yourself.BUT,i am determined to do the things i need to do to stay healthy or who will take care of my mom ?Barb
Rose - 11 Aug 2004 09:52 GMT >Subject: Re: Pointers, suggestions, tips...? >From: barbfrombethel@webtv.net (turkey in the straw) [quoted text clipped - 12 lines] >you can't take care of yourself.BUT,i am determined to do the things i >need to do to stay healthy or who will take care of my mom ?Barb My counselor says that airplane instructions tell you that in an emergency when the oxygen masks fall, you put your OWN ON FIRST and then put your child's mask on. Why? Because if you pass out you can't help your child and you both end up in a bad way.
Taking care of yourself is like putting on that oxygen mask. First, let me emphasize that your life is worth something apart from your mom, you don't have to take care of yourself just for her, you count too and are entitled to some fun. But second, it doesn't do your mom any good if you drive yourself so hard you get sick. Taking care of yourself is one of the most important ways you can take care of your mother.
Please get some support so you can take time for your own doctor's appointments and to go to the beach or see a movie or shop for un-sensible shoes. You're a great person and you deserve it, and it's the right thing to do for your mom as well.
___ "Don't worry Alba. I'd never let anyone else kill you." -- Naked Tango
Robert E. Lewis - 09 Aug 2004 16:59 GMT ...
> > I'm so stressed out that no amount of sleep brings refreshment or renewal, > > and I'm dragging my a.s from one day to the next. If only we can get him > > situated, maybe I can take a deep breath for a change. ...
> Dear Jef, > [quoted text clipped - 9 lines] > Please be as kind to yourself as possible. Worry won't help, and it can > hurt you a lot. I didn't realize how really stressed-out I was until I finally had a break recently. I suffer from TMJ (temporomandibular joint disorder) that comes and goes, but is definitely worsened by stress... and I had been taking migraine-strength OTC pain relievers for it almost daily for a couple of months.
Then my sister came and looked after Dad for a week while I just took off with a visiting friend, drove down to some remote beaches, spent a day at a wildlife refuge looking at deer and alligators, etc. It was the first time in I don't know how many years I've taken a real, go-somewhere-entirely-for-pleasure vacation, and certainly the first time in about five years that I haven't felt I was on-call, needing to check on my father if I was out, sticking close enough to get home within a couple of hours if something came up. I was able to spend a lot of time with the friend in the following three weeks, too - nearer, but away from Dad and thinking about other things.
And my TMJ faded almost immediately -- I've had one very mild flare-up (on the last day of the holiday), and nothing since, even with a return to the usual routine.
 Signature Robert
turkey in the straw - 09 Aug 2004 13:43 GMT Jeff, Believe me i get most of my emotional needs met in this group.Because all of them understand this mess and are always straight forward. Try to keep your stress level down as your dad will be aware of it too.I know from experience.Good luck to you,Barb
|
|
|