Medical Forum / Diseases and Disorders / Alzheimer's / July 2008
Hard Transition to N/Home Life
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Diane P. - 29 Jun 2008 09:47 GMT I posted here before about MIL's declining mental health, sundowning, fractured shoulder and our inability to care for her any further.
We applied to several nursing homes and shortly thereafter got a call that there was a bed in a nearby facility with a dementia/Alzheimer's unit. We felt fortunate because there are only two in the area with specialized units.
The day of admission, which was last Fri was just a nightmare. Paperwork was completed and MIL was being shown the facility and was being escorted by two of the staff as she was walking. They did ask if she was fully ambulatory and we said she was. At home here, she was able to walk on her own, slowly but on her own.
As we headed toward the door, the 90-yr old "sprinter" (with the broken rt shoulder) tore away from the CNA's and started to bolt toward us, promptly fell and broke the left shoulder. What a ruckus...We ended up in the hospital e-room where she was treated and released. We declined to transport her ourselves because I don't think she would ever get out of the car.
We called the following day about her condition and learned that my prim and proper MIL had turned into a punching, kicking, biting shrew! The staff has told us such behavior is not unusual and it sometimes takes several weeks for folks to adjust. It got so bad that the staff actually took away her shoes, hairbrush and other items that were being used as "weapons". The dentures were removed as well as eyeglasses. MIL refuses her meds "because her husband told her not to take pills from strangers". They are ground up in drinks now. She refuses to eat. We've been there at mealtime and the food is good and plentiful.
My husband feels guilty because of the goings-on. The last two days, the staff has medicated her to steady the levels of agitation, but I would never have thought a person with such an old-fashioned prim and proper personna could turn into such a management problem.
Her behavior does not seem to have shocked the staff. They have extended every kindness to her. I'd guess it was only a matter of time before such behavior was exhibited at home here, so we are fortunate to have been able to find the facility. Has anyone else experienced such difficulties? Thanks.
D.
weeks - 29 Jun 2008 14:48 GMT Hi, D, My mother who was placed in an assisted living facility in April has also been exhibiting these behaviors. My mother never cussed in her life at least not in my presence. Now she says some minor profanity with the staff when she gets anxious. She has been combative with the staff when it's bath time and when they need to collect her laundry. My mother was an extremely modest person. When I see her I have no problems with her. I've visited at times when she lays in bed and I can see the depression in her. BUT, I work in a nursing home myself. I've seen this behavior and heard people say my mother/father would never... But yes, they do. From what I have read agitation, cussing, combativeness, etc are usually exhibited by our loved ones with AD. I try to make my visits with my mother light-hearted, fun times. I haven't taken her out yet because I don't know how she'll react when we drive back up to the facility. That's the next thing on my agenda. Make your time with your MIL special. Give her a sense of dignity... You are not alone. smiles, Elise
>I posted here before about MIL's declining mental health, sundowning, >fractured shoulder and our inability to care for her any further. [quoted text clipped - 39 lines] > > D. Diane P. - 29 Jun 2008 17:32 GMT Hi, Elise:
Thanks for your input.
I gather from what the staff has told me, that such behaviors are not unusual. The behaviors are unusual for the family members who have seen them in their relatives before.
Watching her just depresses my husband who has expressed some self-doubt/guilt about placing MIL in the home. I have tried to tell him that while we have helped her recover twice from lifesaving physical ills, there's no fixing dementia/Alzheimer's issue which will continue to grow worse and worse. He relayed the things I told him to a nurse at the facility who told him to "listen to your wife." This seemed to calm the waters a bit, but living thru this is very, very hard. Guilt doesn't go away with a pill.
I just hope MIL comes around and adjusts to her new surroundings as most of the patients in the dementia unit seemed to have done.
I appreciate you sharing your thought and experiences.
Diane
Evelyn - 29 Jun 2008 21:10 GMT > Hi, Elise: > [quoted text clipped - 18 lines] > > Diane Hi Diane,
We always say we don't allow any guilt around here. But of course it is hard not to feel guilty when our loved one is obviously so miserable. I can sympathize with your husband. He must be a loving and caring son. But alzheimers creates a whole new set of circumstances and demands on relationships. There is a perfectly good reason that nursing homes exist. It is too hard to care for someone at home with this illness, on top of her other issues. He should visit her when he can, but to understand that there isn't any sense in taking her anywhere else.
Having had one broken shoulder myself, I can only imagine what two must be like. My orthopedic doctor told me that the shoulder is the most painful joint on the body to break. Your husband might also want to consider that having painful broken bones would depress one no matter where they were staying. As long as the care is good and the place is clean and decent, it is the best anyone can do.
Like you said, there is no "fixing" alzheimers. It gets worse, never better. She is in need of constant care 24/7 I am sure. Nobody can do that at home without breaking themselves in the process both financially and emotionally. I am sure when his mother was in her right mind, she wouldn't want to do that to him or anyone.
The only thing I can offer in the way of encouragement or comfort to your husband is this; they ultimately do adjust and somewhat get used to living in a nursing home. If my mother in law adjusted, anyone could. She was foreign, didn't speak the best english, was fiercely independent all her life, and never imagined in a million years that she would be that incapacitated as to require a nursing home. But she did get used to it, and we would sometimes come to visit when she didn't know we were watching, and she was doing fine.
We also told my mother in law that if she got better she could come home. We told her she should do whatever the doctors and nurses told her to do so she could get well. We didn't consider it lying, because it was the truth. If some miracle allowed her to get well, we would have been overjoyed to take her home. We told her she was in a hospital. I don't know if she ever realized it was a nursing home. It looked like a hospital excepting she was in the alzheimers unit. In fact that particular nursing home was also a rehabilitation hospital and people came there to get well from all sorts of surgeries and illnesses and accidents. That is of course, excepting for the alzheimers unit.
It was a little white lie, but maybe your husband could utilize it to put his mothers mind in a better place for at least as long as she could remember what he said?
Best Regards, Evelyn
carolinasongbird@gmail.com - 30 Jun 2008 00:17 GMT We used the same loving deception on my mom -- that she was here for a short time so the staff could help her get stronger so that she could enjoy their upcoming 50th wedding anniversary in September and so my dad could get some rest, that he was so worried about her that it was harming his health. Of course, Dad kinda blew that story by moving in with her two weeks later and selling the house ... but she didn't remember the story by then anyway.
As a wise friend of mine put it, your job is to *care for* your mother -- not necessarily *take care of* her. You *care for* her by making sure she has the best people *taking care of* her. In all but a handful of cases, once a certain point is reached in this illness, that means professionals who get to go home after 8 hours, sleep, eat, exercise, be refreshed by hugs from their children and come back the next day. The family member caring for someone at home doesn't get that kind of down time, or relief when they have the flu, or coverage when they need a few days away for a family reunion or wedding or just an afternoon at the beach.
When this decision was hard for my Dad because he was afraid Mom didn't like it, I asked him to remember when my brother decided he did not want to go to first grade and pitched temper tantrums every morning. I reminded him that was not fun for anyone, but staying home was not an option. School was the best place for him because there were professionals who could attend to what he needed at the time -- same is true for Mom now. And whether we like it or not -- her reasoning is on par with a 6-year-old. So it is up to the people who love her to make choices for her, just as we made choices for my brother all those years ago.
BUT believe me, I know it is not easy!!! My dad has put me through hell over the decision we made. (I am realizing he is now in early stages of dementia himself and his projection and bad temper are getting only worse as a result.) Just remember second-guessing is a sign you care and want the best thing for her. See if the NH has a family support group -- that might be very helpful to you. And feel free to blow off steam here!
Peace, Songbird
Diane P. - 30 Jun 2008 08:50 GMT Songbird---Thanks you for sharing.
Husband has been going to NH everyday since her admission, except for yesterday...he had a golf tournament. I am hoping that this is the first step in "lightening up".
I very much appreciate the concept of "caring for" vs. "taking care of".
Yesterday for the first time in years, I actually took the time to sit in my living room and watch a movie from strat to finish without concern that something on the screen caused MIL some angst!
I am very grateful for the sense of relief I feel and newly found sense of self.
D.
> We used the same loving deception on my mom -- that she was here for a > short time so the staff could help her get stronger so that she could [quoted text clipped - 36 lines] > Peace, > Songbird Dennis P. Harris - 01 Jul 2008 05:57 GMT > Husband has been going to NH everyday since her admission, the best thing he could do for his mother *and* himself is to take a vacation, go away for a couple of weeks. seeing him every day reminds her that she doesn't want to be there, and she can probably detect that he's upset, too.
seriously, a long break is probably the best thing for both of them.
Diane P. - 30 Jun 2008 09:09 GMT Evelyn:
Thanks for your response to my post.
I don't feel guilty, but Bob sure does. He says that his mother was somewhat together before she got there, but now she isn't. I don't see it that way, but I don't want to push the discussion "up a notch". He is just as you describe, a loving, caring son, sometime to distraction, but she's his only mother.
His mother was a stubborn woman at times, set in her ways that have now been derailed by the change in her environment and by the disease. The reaction is to protect herself by the use of disruptive behavior.
The right shoulder healed pretty well, much to our surprise and that of the orthopedic, but she has developed a tremor in the right hand. The left is exactly the same type of fracture, so we're hoping recovery will be to the same degree. The NH told us, they can't tell if she is in pain because they get both answers to the question when they ask.
MIL has been attempting to get out of bed in the middle of the night and was "yoo-hoo-ing" for me at 2:00am setting off the bed alarm, so the sundowning is in full swing. All I can say is, better them then me.
The care is good, the place is immaculate and food is plentiful..if only she would eat.
Interestingly enough, she has asked us why she was there. We told her that she is ill and needs the care of doctors and nurses, but she hasn't asked to come home which I find surprising.
I am finding comfort in my newly found freedom, after 5 years. Once MIL is settled in, we're going to take a week or 10 days or so away, and settle in to a nice quiet cove on the lake for some much needed/deserved R&R.
Thanks for your encouragement.
Diane
weeks - 30 Jun 2008 14:11 GMT Hi, Diane, I also tell my mother the doctor wants her to stay there for a while. I noticed this line, "He says that his mother was somewhat together before she got there, but now she isn't." I have felt this way several times and about ready to give her another try out of the facility. Fortunately, I thought it over a lot and realized I did place her for a reason. They are out of their element, they don't know what they are allowed and not allowed to do, it's all confusing to them. Put the added anxiety into the factor and they are different people. I also liked the "caring for" vs. the "taking care of". We do what is best for ALL involved. smiles, Elise
> Evelyn: > [quoted text clipped - 34 lines] > > Diane Diane P. - 30 Jun 2008 15:34 GMT > Hi, Diane, > I also tell my mother the doctor wants her to stay there for a while. I [quoted text clipped - 9 lines] > smiles, > Elise Dear Elise:
The description of "somewhat together" is probably giving her more of a benefit of the doubt than she mentally deserves. She cannot hold a conversation although she could speak of 50 years ago. In case it was needed, we tried to get her to remember her name and address. We got to the name part, but nothing beyond. We tried to refresh the memory for "911" but when we mentioned to go to the phone, there was no recognition of what the phone even was.
We both agree that if it were possible we would've kept on with the caregiving, but between the falls, the sundowning, the 30 trips to the bathroom a day, re-training toileting procedures(paper before the underwear goes up, not after), the discontinuance of personal hygiene, inappropriate dress and our inability to run the house because of all the other tasks, our lives became domestic nightmares. It got to the point where one of us always had to be in the same room or a catastrophe would be in the works. It's no way for any of us to live.
My husband mentioned to the nurse at the NH, that I had told him that this situation never gets better, it always gets worse and harder on everyone. The nurse said "Listen to your wife.."
So, you are absolutely right. Do what's best for all involved, and the best thing for this family is my MIL in the dementia unit of the NH. She doesn't know it but we do.
Diane
Dennis P. Harris - 01 Jul 2008 05:59 GMT > Once MIL is > settled in, we're going to take a week or 10 days or so away, and settle in > to a nice quiet cove on the lake for some much needed/deserved R&R don't wait! DO IT NOW. she will settle in much better if she is left alone for a couple of weeks.
Diane P. - 01 Jul 2008 09:19 GMT >> Once MIL is >> settled in, we're going to take a week or 10 days or so away, and settle [quoted text clipped - 3 lines] > don't wait! DO IT NOW. she will settle in much better if she is > left alone for a couple of weeks. Thank you, Dennis.
I shared the other postings from here with my husband before we placed his mother and they helped him with the decision.
I am hoping he will listen to me now.
Diane
Evelyn - 01 Jul 2008 12:36 GMT > >> Once MIL is > >> settled in, we're going to take a week or 10 days or so away, and settle [quoted text clipped - 12 lines] > > Diane Dennis is right. Some nursing homes actually tell you not to show up for a couple of weeks to allow the patient to settle in. Some do not, of course, because families often want to keep looking in on them to see if they are OK. But ideally it is probably better to let them adjust alone, without anyone to bounce back off of, because it actually works against their adjustment.
I personally advocate both. Go to visit for a couple of times in the beginning to set your mind at ease, then take a little vacation or break to allow them to settle in. That was what we did and it was OK. She did settle in fine.
Evelyn
carolinasongbird@gmail.com - 01 Jul 2008 13:36 GMT Go to visit for a couple of times in the
> beginning to set your mind at ease, then take a little vacation or > break to allow them to settle in. That was what we did and it was > OK. She did settle in fine. Amen. When Mom moved in, she would be fine during the morning and lunch, participating in activities, talking to other residents. Then Dad would show up, take her out for a treat (which was not allowed on her diet!), and bring her back after much later, after she had missed her insulin shots, etc. She would be a mess the rest of the day, whining she didn't know anybody, needed to get home to him, etc.
Then he was concerned she wasn't adjusting and wasn't getting better. We pointed out that he was getting in the way. He did not take that well, but he has his own mental issues. Your husband can understand the concept.
Tell hubby it's harder on him than on her. You have found a place you like and a staff you trust -- now let them do their job of helping her settle in. They will call if there is an emergency. You can also discuss this with them and see how long they feel you should give her before coming back or if they will call and let you know when is the right time for another visit.
She may not even notice you are not coming. Mom would say (before she went in) that she never got to see me, even if I had been to visit three or four times in the previous week. She simply does not remember. So I visit often enough to make sure she is OK and as it suits my schedule. I know when they serve lunch, so I pop in for a few minutes as she is finishing up with the ready-made exit line that I am meeting a friend for lunch. (even if the friend is me!)
Songbird
Beth Cole - 01 Jul 2008 14:14 GMT > Dennis is right. Some nursing homes actually tell you not to show up > for a couple of weeks to allow the patient to settle in. Some do > not, of course, because families often want to keep looking in on them > to see if they are OK. But ideally it is probably better to let them > adjust alone, without anyone to bounce back off of, because it > actually works against their adjustment. When we placed my MIL, we were told that we could look in on her but not visit her for the first two weeks. She needed to get integrated into the social structure of the facility (and there is a definite social structure!) without family interference. After that, we were welcome to come pretty much any time.
That period was very difficult for my FIL. He hadn't been sure about placing her to begin with, and not being able to sit with her and talk was painful. Several times during that period, he wavered and suggested that maybe he could take care of her at home. My husband believes that had I not been completely resolute and responded each time with "No, you can't. She needs round-the-clock care that you can't give her and still be healthy yourself.", there was a good chance that the two of them would have taken her out of the home.
That time isn't just for the loved one. It is for their family to adjust, as well.
Beth
 Signature Don't go around saying the world owes you a living. The world owes you nothing. It was here first. ~Mark Twain
news.chi.sbcglobal.net - 30 Jun 2008 00:27 GMT You may have read or become familiar with my postings, but I cannot help say what I know for a certainty. Try to have empathy for your MIL, as nursing homes are death fields for many, and they cannot express the anguish and suffering they feel. I have a dear one (friend) lived with me for 8 years because her mother could not handle the situation. There was a friend of her brothers that loved the girl (who is schizophrenic) who was on marijuana. Now you may not believe this. Stimulants and all anti-depressants have an uncanny ability to transfer harm from the stimulant user to an innocent person with whom they have a mind connection in the form of crohns. And as an aside this harm continues whether they two or more persons are in the same room or miles apart. Only the stimulant and mind are at work. No one is aware of the process. He was affecting me with harm besides the girl, so thinking I wuld do her a favor (and me) I placed her in a very nice nursing home. Now the home is lovely, care is good, food is good, people friendly. So everything should be fine? Well, it would be, if not for the anti-depressants they prescribe for some residents. That environment affects the others, and they sufffer not knowing why. I am writing this because the situation has me so despondent (and I would not take an anti-depressant because I know the harm it does). I finally got the administrator to place her in a room with no anti-depressants and even got a doctor to prescribe Ativan to reduce her stress. But her condition is deteriorating so quickly, I am beside myself. They took away the Ativan, so she is left defenseless. She was not physically ill when she left my house, but what she is enduring now is more than I can bear. I have pleaded with the administrator to ban the anti-depressants, to no avail. She must abide by the psychiatrist, she says. I hate the woman with a passion and I could honestly kill her if it were possible. She is so hardened to death, she sees it all the time, that she says "everyone has to die sometime." We all know that, but not by her hands. That is up to G-d to say when. I cannot believe this is going on, I suffer right along with her. This is an orthodox Jewish woman owner and I am Jewish, and it is beginning to color my feelings for the bribery taking Bastards of my own religion. The people cry and do not know what is making them feel so strange. (One must know the crohns feeling to understand). It can affect the body from head to toes, eyes,ears, anything that can be thought or not thought can happen. And the workers that are observed constantly have a bad record of succumbing also to crohns. But they leave when they feel ill. The residents do not have that choice. I would take her back, but I am too elderly now and ill much of the time and she likes being with people. Which is an advantage for anyone if they were not sentenced to death by the anti-depressants. I do not know how to get this across as anti-depressants are the boom of our time, and earn more money for the pharms than other medications. Is there an answer. Every moment I say to myself "What can I do for Ellen" Taking away the medication that helped a little is the last straw. I do not trust the administrator anymore. The anti-depressants should be banned from the nursing homes, so everyone can be natural and comfortable. They have enough to deal with the situation they were admitted for. If enough people made a fuss like they did for "mercury" and ADHD somebody might listen. I live in Chicago, and would appreciate any help I can get. Strange post, strange illness, strange situation. Hitler has come alive again with the death camps. Gail Michael
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