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Mary Ann DiBerardino, Daughter of Chester (91) and Rosemary (90) Haak

photo of the haaksphoto of diberardino

Theirs is a universal family story that shows the inability to control the end years of life, no matter how much one plans. In 2003 the Haaks came into a nursing home in rural New York so that Chester could recover from a hospitalization. But due to his wife Rosemary's worsening dementia and his own struggles with Parkinson's disease, they were never able to leave. Daughter Mary Ann DiBerardino, a nurse, and her husband Bill, who is retired, together with other family members, have struggled to help her parents make the heartbreaking decisions and changes necessitated by their progressive frailty and dependence. Below is the edited transcript of an interview with Mary Ann and Bill conducted Feb. 10, 2006.

When did your mom start to have memory issues? And what was your dad's response?

It was about ten years ago. She began leaving the groceries in the car, having difficulty setting up my father's medications. She would write everything down. They would miss some doctors' appointments. My father would always cover, and say, "Well, we had the appointment but the doctor just wasn't there." This happened on more than one occasion. He may have recognized, but he was in denial.

Was she still always caring for him, even with her problems?

My mother cared for my father 24 hours a day. After his heart surgery about seven years ago, we children moved their beds downstairs to accommodate him post-op, but it also remained a permanent situation that enabled Dad to be on one floor.

What was the tipping point?

When things started to change more dramatically, my father would call me, and that was a little unusual, and he would say he was hungry, and "Are you coming today?" So my husband and I began to go every weekend. And we were aware that the housekeeping wasn't being taken care of. Dad would share that mother baked with plastic, or she would put food from the fast food restaurants in the microwave and they'd be wrapped in Reynolds Wrap. So we realized that we were getting into some real problems.

… So after one of his hospitalizations, the discharge planner said they had to have a little help. So they had a home health aide for two hours a day. And so in their minds, everything was A-OK because they now had help that the family had been insisting on. Allthough it was only two hours a day, that did keep them afloat for another year or two.

And then I was needing to go more often. And it was an hour and 20 minutes from our home. And my father called one day and said mother was having chest pain again. And I got in the car and went particularly fast that day, as anyone would when it's their parent calling. And I did get my first speeding ticket. And I realized at that time, we just had to do something because it was anxiety, not just them, but for my husband, for myself and for my brother and his wife, who lived locally. But dad was not getting his medications. We would always find him in the bed or in the chair, and he was always hungry.

Did you have a big family meeting?

Five years ago all of my siblings were in the area, and they live quite a distance away, so to all be together is unusual. And they had a meeting with my parents -- Bill and I were not there -- and they addressed the driving. My parents became very much on the defensive, and we decided we couldn't address anything again for a period of time.

Defensive? What was their reaction?

It was difficult to have a good relationship with them because I believe they were losing trust. I believe they thought we were planning -- which we were, we were constantly talking -- what are we going to do? We don't want someone else injured. We don't want them to injure each other. We don't want them to burn up in the house by making poor choices. So we would discuss it and discuss it and email and phone call. And it was probably most difficult on my brother because he would drive by the house and see mother shoveling snow at 85, and he'd come in and was unable to talk her out of doing this. I mean, she was just so tremendously determined to take care of everything.

She resisted every effort to take away her license? Bill?

Bill: It was a very difficult decision because the doctors were hesitant to say in writing that they couldn't drive anymore, because they didn't want to lose their relationship with the patient. Eventually, letters had to be sent to the Department of Transportation and they reacted over time and the licenses were not renewed. So it took a very long time to really get to where everyone was willing to do that. And she wouldn't give up, but she gave clues that she would rather not be doing the driving.

Driving in particular is a hard, hard one.

Bill: Well, you take away their independence. If you can't drive, you can't go anywhere on your own. You have to rely on someone else. It's got to be very tough.

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What event changed everything, Mary Ann?

About two years ago, during the summer, we were well aware my father was in a decline and that it was most likely due to the fact that he was not getting nourishment or his medications. He was seeing the doctor, but the doctor had no idea what the home situation was. And he was very fond of mother and dad, and very much believed all of their stories that they were doing well without assistance, outside of the home health aide for two hours a day.

But my brother was calling me often and saying, "We got to do something. We've about had it. Dad's going down. I can't stand to see him like this. He's uncomfortable. Mother is preventing him from getting the care he needs. If he had care, he would feel better. And she probably would too."

So we were visiting more and more often. We would go up and started taking them to church, because we felt [it was] better that we drive an hour and a half to take them a few blocks than to have them getting in that car every Sunday, and it got to where my dad wasn't able to go. And we would take just mother.

Did he have a medical event?

Due to not getting his medication, he became seriously ill. … He was very depleted from not eating and not drinking. And my nephew and my brother called back and said, "This is it. He has to go to the hospital, so would you please call?" I called and I said, "Dad, I will meet you at the hospital." And he said, "I'm afraid, if I go, I'll never come home."

So they called an ambulance; he was too sick to put in our car. And I met him there at the hospital. And then Bill and I stayed, and they admitted him. And I went and stayed with my mother for the duration, because we didn't feel that she could be alone. We didn't want her driving back and forth to the hospital, which was about a 30-minute ride.

And her younger sister, who was perhaps 85, came from Chicago, and she stayed with her and she would share with me that, "Oh, your mother really is not your mother. I don't think she should be staying here alone." So she stayed, and I would go home at night and go to the hospital and visit my father. But I realized the activities of daily living were very difficult for her. And I believe with the fear of something happening to my father, it was more and more difficult for her to concentrate and to find things in the house, to collect her thoughts.

How did your dad know he would never return home?

The lawyer asked us to come and talk to him and he said, "You'll have to think as a family what your game plan is here, because you know that for quite some time you have felt that your parents need to be in assisted living or someplace where they're going to be cared for.

“It has been the most difficult time in my life, because I've had guilt. I don't think anyone wants their parent or a loved one to have to be in an institution.”

So with that, and then talking to our siblings, we knew we had to take some measure. And the doctor recommended that my parents be near family, that this was a time in their life where their needs were going to be the greatest.

Bill: We should mention that it wasn't until this had occurred that we found out that in fact my wife had power of attorney for my father, and also the medical documents necessary in case anything happened, the health proxy and so on. And my wife looked all over for different places to bring them, and then the doctor said, "You should really bring them close to where you're going to be." And that's when she first considered bringing them here, locally. And obviously, we couldn't say for sure at that time whether this was going to be permanent or not. But then the question arose as to what would happen to her mother.

My wife asked her what she wanted to do. And of course, they're so close, there was no question that she wanted to stay with her husband. So the nursing home made accommodations for a double room and that was the beginning.

[What was the adjustment like for them]?

The initial adjustment was very difficult. I'm not sure if it was more difficult on Bill and me, or if it was more difficult on my parents. Initially for my father, he was so grateful to have meals, and to be cared for, and he responded dramatically. He was able to do things he hadn't done in 2 or 3 years. They got him into rehab. He was able to get out of the chair by himself, and use a walker. And after he'd been in rehab for a period of time, we knew we were going to be faced with this dilemma of telling them that they were not able to go back home.

[For] mother, on the other hand, the adjustment was very difficult because she saw other people become the caregivers. And it was very challenging for the staff to try to bathe dad and assist him, and mom being in the room wanting to do it, and perhaps able to do some things, but then there was the fear of her falling if she tried to lift him or assist him. And it continues to be a day-to-day challenge where particularly the aides and the nurses have had to use not only their physical bodies -- this is very hard work, caring for our adult elderly, dressing them and all -- they've had to use their brains, because you need to use a lot of psychology.

Did you have to get special permission for the beds?

My parents began breaking the rules from day one. My husband often comments that it's like twins: "What one doesn't think of, the other one does, Mary Ann." And you realize, if one was there without the other, there wouldn't be quite these challenges. They wanted their beds together. But there are state laws, and we didn't want them causing a lot of challenges at the nursing home. But one day I walked in early on and they had pushed the beds together. I found the bed rails under the beds wrapped in newspapers. And the staff locked the wheels on the beds, and they were willing to let this go, for which we're all quite grateful, because actually at home they hadn't been able to sleep that closely. They didn't have that kind of an arrangement. So in a way, this was quite a little blessing for them to be able to sleep holding hands and close by to one another.

How long has it been?

Bill: It'll be three years in August. And it's just been a continual battle of one type or another. We pretty much have been there once or twice or three times a day since they've been here, most days. He fell and broke a hip a few years ago and had to stay. And then she had some problem where she was in the hospital for a week. And then recently he fell and broke another hip.

It just was a continuous thing. And it's been a challenge in that respect, but a blessing at the same time, because eventually we did convince him that the house had to be sold.

He was a banker?

Bill: Yes, for many, many years. That was his whole life. And we still watch the stock market together, and I still talk to him about those things. And I go over his statements with him, and that type of thing. But the biggest change, I think, has taken place with Mary Ann's mother.

How do you see your dad adjusting to that? And then your mom?

Well, the last two years -- every day has challenges. No two days are the same. And it's been a real roller coaster. If anyone has been a parent, it's more challenging than that. Because, with your own child you make all the decisions and you don't even think about it. But when it is your parents, they are still your parents. The respect and the dignity remains throughout all. And it's never normal or natural to make any major decision for a parent. It's uncomfortable. It's depressing.

We have been blessed, because in our area all of the doctors at the hospital, foot doctor, the bank, the church, is about a 10-minute ride. So because we have a van, we've been able to take both of them out a great deal to try to keep them happy.

Dr. Coch was willing to take them on as his patients, which was just the greatest plus there could be. And he realized very soon on that dad was not going to be in a situation to go back home.

And I believe it was within a period of a few weeks upon their admission to the nursing home. And Dr. Coch came in, and he said, "I want to talk to your father today." And so we took him in, and Dr. Coch sat down and was very kind but very frank, and explained to him that they would not be able to go back home. However, the conversation did not die that day. Dr. Coch had to step up to the plate several times and tell them again and again, because Mother just did not remember.

But what we have found in the nursing home is that everyone wants to go home. And most, even after years there, still talk about going home. So early on, Bill and I decided the best thing to do would be to take it a day at a time and never tell them that they were never going home and never to take away hope, but to try to do things to keep them happy.

How has it been for you? Did you feel guilty?

Bill: Well, when you mention siblings, her two sisters are far away, but her brother and his wife took on a lot of the responsibility while they were still at home, trying to visit most days and things like that. And we were the ones traveling long distance. And since they've been here, they've had to travel once a week, a long distance. So it's kind of reversed in that respect.

So the family has shared the burden.

Bill: Yeah. And everyone has felt the same concerns and has had the same problems. But for us, in many respects it's a blessing, because we've been blessed to have a good life and good health. And so we constantly are doing things for others anyway. And it's good to be able to do. There's times when I'd like to get away, and it's tough, because you have to have an advocate in these environments. And so we've never gotten away for more than week at a time in the past three years. But otherwise, I can't say that it's been any real burden, because we'd be doing for somebody anyway. And my wife especially, because she's more inclined in that respect.

And for you, Mary Ann, what was it like? ... How complicated?

It has been the most difficult time in my life, because I have had guilt. I don't think anyone wants their parent or a loved one to have to be in an institution. No matter where it is, no matter how nice, no matter how great the staff is, it's still an institution. And as a child, I always feel like I can make them just a tad bit more comfortable. I know their desires. I know their needs. They don't have to tell me. So I've worried about everything, even the linens, the pillows, the heat in the room, the view, the food. But, most of all that I've let them down by having to make the decisions we've made.

But my sisters -- we email and we talk daily, and my sister-in-law -- and we all know that this is what we have to do. But my husband can tell you that I still, up until just a few months ago, felt like, is there something better we can do? An apartment? Bring them here? We could not bring them here because we're not handicap accessible. But until my father fell Christmas Eve and fractured his second hip, I was still -- nightly -- feeling that we could do better.

And in fact you tried that once?

We did. They busted out once, didn't they? [laugh] We did actually attempt to allow them a different type of living. We thought perhaps they could manage in assisted care. The building is right next to the building they're in, and dad would look out and question, "What is that building? We see people going in and out." And he was very concerned about the cost, that he was paying for himself and mother. And he would kiddingly ask the administrator if he could have a discount. And then he asked about the assisted living, and I told him that it was considerably less money, but less service. And he expressed a desire to have a try at it.

So we took them over, and it just did not meet their needs. And within less than 24 hours, we took the wheelchairs and took them back, and they were happy to be back at the nursing home.

What changes do you see in your dad? How do your mother's changes affect him?

My parents have been married 68 years, and a wonderful twosome, a tremendous example of what marriage can be, should be. But living together in a room for two years has been, I believe, extremely challenging for my father. He has physical demands, but he is, I would guess, one of the most (mentally) clear residents in the building. He's presently treasurer of the Resident Council, and most likely knows everyone by name, and is very interested in all of the social things going on.

But by the same token, with mother, with her problem with her memory, and constantly repeating the same stories, it can be difficult for dad some days, difficult to get away from this, because he likes his television, and with mother, the added noise and confusion aggravates her situation. So my husband spent endless days trying to come up with earphones that dad could put on, and we could turn the volume down on the TV. But the problem was too many buttons had to be pushed. And after ending the life of two VCRs and one set of headphones and tripping on wires, we weren't able to accomplish that.

Yesterday, you and Dr. Coch discussed separating your parents.

My parents continue to be in the same room together. Dad's physical needs have grown; mother needs much more caregiving and needs assistance with all of her dressing and getting her to the dining room. And dad, although he's very quick in his mind, he's not able to assist her. And due to his recent fractured hip, much more equipment had been brought into the room. He had oxygen and the wheelchair and a walker, and he has a trapeze over his bed and occupational therapy visits, physical therapy visits. So many added staff have caused more upsets in the day for my Mother. And this certainly doesn't help her situation.

So with the increased agitation, she's up nights. And dad can't sleep. It's just a cycle that we aren't sure how to figure out how to accommodate his needs without interfering with her necessity to be up nighttime, which often happens with patients with dementia.

So Dr. Coch and the staff have talked about the possibility of separating them, to give better care to dad and perhaps allow mother the ability to roam around in her room a little bit more at night.

I've talked with my siblings about this, and I've given my father opportunity to express how he's feeling, and he feels as though it may be a good idea but he feels that it would be abandoning my mom.

I think we all feel great concerns about what may happen to them if we do this. Would it be worth it? Or would it not be better just to have a little extra-long nap in the daytime to compensate for the nighttime? If the staff can deal with it, and if Dr. Coch doesn't feel that it's harmful to their health, it just does not seem the appropriate to do at this time in their lives.

Bill: It wouldn't work.

What do you mean?

It just wouldn't work, period. First of all, change is so difficult in older age, and especially with any type of dementia, I think it's even much worse. But the two of them have been so close for so long, he could never do it. And she just wouldn't survive. .. You'd have to tell her he was gone. She just couldn't handle that. So it just wouldn't work. No matter how much it might seem to be good medically, there's no doubt in my mind, it's out of the question.

Bill, do you go there often?

At least daily, sometimes twice a day, depending on the needs. And lately we've been able to walk again with a walker, because it's much harder. But I think it's helped to keep her moving. I keep telling her it's for her red blood cells. So it's been a good thing, I think. I'm able to bring him his mail and his documents and things so we can try to keep him up to date on what's happening.

What does it do to your own thoughts about aging?

Bill: Well, [laugh] I've thought a lot about it over the past years. You know, you would like to avoid it for yourself, at all cost. But the more I think about it, having been brought up in a very religious environment, obviously suicide is out of the question. I joke with the kids about making sure there's a little pill to give me at the right time, but I would never place that on them. So there really isn't a hell of a lot we can do about it. We don't know when it's going to happen, what's going to happen, and we're all potentially in the same situation.

But, I think we can take steps to move into accommodations that are all on one floor, smaller accommodations that require less work, things of that nature, so that our children aren't burdened with the types of things my wife was, and with this big 14-, 15-room house. But other than that, we really have no control over what's going to happen to us, mentally or physically.

Mary Ann, did your dad want this for himself and your mom?

Well, in the last two years, I have the blessing -- I've gotten to know both of my parents a little more. I'd always felt close to mother, but dad was a man who was in many activities. He [was] president and managed the bank, and he had a little railroad on the side, so he was not at home much. I somehow must have known he had a sense of humor, but since being here, that has come to the forefront so much.

So I have grown to appreciate the gifts that they have been to me. And I'm sure that's part of why we feel that it's a privilege to be able to do the very best we can during these difficult years for them. There was never a time where they weren't there for me, ever, ever, ever. Never.

And there is your dad's ability to rebound, his extraordinary spirit.

Bill: Let me just tell you, I call him the Eveready Bunny. [laugh] That's kind of my way of describing him. He just keeps going and going. As I've said to many people, he's got the worst dietary habits in the world, he's never exercised a day in his life. And he's had many major surgeries, and he just keeps on going.

And you?

My parents are both very optimistic individuals. They've always been very sociable. They have cared for many people. I think as a child of being in the car with them, taking meals to people and it just went on forever. It was just part of the routine, taking care of the grandmothers, relatives, friends, neighbors.

My father, I believe I could count on one hand the number of times he's ever felt sorry for himself or complained about his inabilities to take care of himself. He's wheelchair-bound now. He really can't even move in bed. But even when he fractured his first hip in June, two years ago, and then he fractured this hip Christmas Eve, and during the process of the pain and the preparation for surgery and the post-op, he never complained. It doesn't happen. He is just quite amazing that way. But he also has my mother, that he wants to get better for, and be there for her. So he's not one to want to stay in a hospital longer than is necessary.

What's ahead for them and for you?

Bill: It's hard to answer, because I don't see any change.

I've always felt that a quick death is one of the greatest blessings you can have in life. And I would really pray for that, for both of them. But other than that, we just have to keep doing what we're doing. Little by little, you know, the house got sold, eventually the car will get sold, and from there on in it's God's choice, I guess.

Mary Ann: Fortunately, we are faith-filled people, and that's a gift from my mother. Since they have come here, I definitely try to live a day at a time, because no two days are the same. There are many days where I've been frightened that we were going to lose mother, frightened that we were going to lose dad, and those are very tedious, emotionally draining times. And I try to say to myself: Now Mary Ann, they're 90 -- why are you so upset each time something happens? But I presume that's a natural phenomena. And I take the responsibility, as my husband does, as we do together, of making these decisions about their health very seriously.

But with the community [and] the nursing home, there's a lot of love in that institution for my parents. Just tremendous. They call us very freely. The doctor has been -- "awesome" is the only word I can use. He's a friend to them, he's a physician, he's there at all hours. I know that we can call upon him for these difficult times. Our church, the priest visits once a week. It takes a village to care for our elderly people in a respectable way.

The genes are pretty good in both families, so 90 seems young many days. And then there are other days where we feel that perhaps God will take them home sooner. I believe we all are greatly concerned about what may happen. It's certainly not predictable that both of them will go at the same time, and so our greatest concern is trying to stay with the day, and not look down the road and add more concerns, if we don't have to.

Bill: I'm much more objective than my wife about it, but I can tell you it's going to be tough. Whatever happens, it's going to be tough. You can't be with someone that long, caring and helping, without thinking it's going to be tough. That would be my last comment.

Bill, how does this affect your wife?

Bill: It's beyond description. And one of the reasons it is, is because it's her parents, not mine. She takes it much more personally. No matter what happens, no matter if there's an extra sniffle in the day, or if he doesn't sleep, or she doesn't sleep, or this or that, it just tears her up. ... And as I said earlier, I'm a little more quantitative about things, I'm a little more logical minded, as men probably are. But she just takes all of it in an emotional sense, and it drains her physically, mentally. Most nights she has trouble sleeping. ..

But there's nothing I can do. And that's the hard part. So it's very difficult to even attempt to describe what it does to her.

For you, as the daughter? ... Did you have any idea?

It seems as though every day I meet a friend, an acquaintance, a relative who's faced with this very same dilemma of caring for their parents and making these difficult decisions that no child wants to make. And every day there is a decision, even if it's a little decision like, well, do they need an antibiotic? My parents do have a living will and a healthcare proxy, but when push comes to shove: Are you not going to fix that fractured hip? Are you not going to fix those fractured ribs? Are you going to allow your father to choke? Or are you going to make sure that he doesn't have popcorn and things of that nature? The ups and downs in the day are many.

My husband has no idea the rock he's been for this family. He seems to roll with everything. I know he feels things far more than he discloses to me. He's always there. I can call him. He says they're not his parents, but he treats them as [if] they are. And there's never been a time where I've asked him to go visit, that he's not done so, regardless of the situation. Fortunately he is retired, so that aspect has been a real positive for us. I'm still working three days a week, and that has its challenges as well, because I like to be able to be with Mother and Dad when they go to the dentist, when they go to the doctor.

I certainly hope that our health continues to be as good as it is, and we just pray daily for strength, for courage, and for the ability to do as God asks us. It's a journey. And it's not a journey without my brother and my sisters and my sister-in-law and my brothers-in-law. They all feel this.

Can you give an overview of your struggle since they've been in the nursing home.

My parents, because they are both so strong willed and very intelligent, and because they've been compensating for one another for so very long, they've been very creative while at the nursing home, in terms of getting out of the nursing home. It has a special combination, and no one is to go out unescorted.

To this day I think my parents are still trying to think of ways to get out of the building. And on a few occasions, they have done so, either with the help of someone else or just figuring out the combination. Dad can tell Mom how to push the buttons, and she can do it. So these have been difficult times, and funny maybe, but also realizing that they're pretty desperate on their mission. They even made up a time where they were going to a wedding and got all dressed up and they were heading out at 6 a.m. So they've been challenges, and I'm not sure everyone is faced with these, or if it's only because there are the two of them to help one another, whether it be escaping, or taking the bed rails off the beds, getting up in the night and eating food in their refrigerator.

They have their own private phone line, and so they've called the police and they've called the priest and they've called the taxicabs, and I now realize that perhaps it wasn't our best decision to have this private line put in for them, because with every decision there's a little dilemma that we are then faced with. That's still on course. Dad even got an ombudsman to help him get his license back and get back home. And when I heard that, I all but collapsed, because it took so many months to get them out of their home and to get the license, and then to think that she went and got papers for him to sign to get his license back, this was a very, very troubling time.

Again, my sisters and the rest of the family, and particularly my husband, we dash over and get them back in the building or whatever's needed. Whatever the staff needs us to do although they're very accomplished in their skills over there. It's pretty amazing.

Mary Ann, what has it been to watch your mom decline?

Seeing my mother decline mentally and physically has probably taken the greatest toll on me. No one is prepared, ever, to see, particularly daily, a decline in a parent. With my mother it's been a slow process, but the last few months seem, for whatever reason, things have escalated. And it's not unusual for her to perhaps wear some of my father's clothes, or perhaps have him wear some of hers. She does a lot of layering. She'll have several blouses on, or more than one nighty on. And I come home and I worry: Is she going to go to bed with several layers of clothes on? Are they going to go in? Are they going to realize? It's difficult some days when I'm not sure if she doesn't eat because perhaps she's forgotten how to use her utensils. Or does she not know how to swallow?

It's not pleasant, because I keep trying to fix things, and even though my head says I can't, your heart wants to fix everything. And the needs only increase, and you find that you might fix one thing and then the next minute it's something else. So I really have to be honest and say, I have not gotten to the point where I've relinquished much of what I need to relinquish and say it's all in God's hands.

Your mom must have been a great lady. Do you cringe?

My mother is ... a lady in all regards, and she certainly taught us through example. She just was a model mother. She made my clothes, and she helped with my homework, and she was there for me through thick and thin. But there was a modesty of that generation that also has, I'm sure, been passed on.

And it's been very difficult for me to know when I can step forward and assist her in her daily needs, particularly now that she's not able to dress herself and undress herself and take care of her most intimate needs. This has been a great struggle, to continue to give her the dignity but also take care of these needs. … Sometimes I would leave the door ajar in the bathroom, just to make sure that she doesn't fall, in order to enable her to have a little privacy.

Because each day, a little more slips away. And each day, she's a little less like my mother -- something that many, many people have experienced. And even with my nursing background and caring for elderly and ill and terminally ill, nothing has prepared me for taking on the role of caring for my mother.

So it has its joys, but it has some deep sorrow as well. It's difficult. But I think it's the way it should be. And she continues to be a lady. She likes her makeup and she likes her hair pretty, and I want her to look pretty. So just about daily, I try to accomplish that for her.

Did you expect that your nursing would have prepared you?

I never had anticipated being in this position, nor having my parents in the situation they're in. And our daily struggle is to continue to try to assist them in having a purpose in life, because there's no question that in many aspects they've lost the quality of life.

For my father, it's not difficult because he gets the paper every day and reads every other paper that he can get his hands on. And he watches the TV, and he uses the phone and keeps in contact with all of his friends.

And mother is somewhat lost in her world. But I do believe she's aware of that loss. And so now we're faced with some new things going on with her and we're hoping that we can still take things to her that she can do to reduce her anxiety level. Because even though sometimes the body can't do things, the mind still feels as though it should be.

For example, she sees the bird feeders out the window, and she thinks she can go out and fill them. And they found a little key in the emergency box, and were just about out the emergency door one day when fortunately the alarm went off and alerted the powers that be that someone was going out the back door. So it's got to be just very crippling, with every little thing they take on.

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posted nov. 21, 2006

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