Managing care for alzheimers in independent living posted by MyMother'sKeeper @ 06:14 AM November 17, 2008

MyMother'sKeeper — Mon, 17 Nov 2008 06:14:54 -0000

To All - I just read my post and spotted all the misspelled words. I do apologize. I think I've been hanging around with my mother too long. And, I need more sleep.

Managing care for alzheimers in independent living posted by MyMother'sKeeper @ 06:07 AM November 17, 2008

MyMother'sKeeper — Mon, 17 Nov 2008 06:07:11 -0000

Maryl - My apologies for taking so long to respond to your question. Times with mother are as busy as ever.

Forgive me for using the generic term "assisted living" when I should have said that my mother's care is at the independent living level. So many facilities use those terms almost interchangeably and some in my area no longer offer care at the independent level. Of course, you are correct that the levels of care are different depending upon the need for assistance with activities of daily living (ADL) and medication administration.

All the terms can be so confusing and I will refrain from my tangent about the subject. I will simply say that it is critical that all involved understand the facility's definition of the terms "retirement", "independent" and "assisted" living. The terms do vary from facility to facility. So, again, if anyone reading this post is considering care for a loved one, do your homework first before your choose a facility.

Maryl, from what you are saying, I assume your father's current facility does not offer assisted living and your would have to move him to a new facility in another location. Wow, that is a tough decision.

It sounds like you have a very good level of care where he is currently located, based upon his needs. Most independent living facilites offer little oversite of the residents. They take the word "independent" literally. The fact the staff is willing to go and get your father for meals and certain activities is a real plus and I am sure it is a comfort to you to know that this allows another time someone is "checking on him." The activities director is willing to assure mother's attendance at the exercise class, but no one promises to see that she arrives for meals. Meal time attendance is offered at the "assisted" level in mother's facility. The 10:00 a.m. rounds are normal in mother's facility, but, honestly, that is of little comfort to me since she is up by 5:00 a.m., goes to the dining area, and complains to me that it's not open early enough and she has to go back to her room and wait. So, the door tab indicates she has opened the door, but when?? My comfort is in the alert bracelet she wears. Every day, I remind her what the bracelet is for and have her tell me in what situations she would push the button. So far she's scored 100% on the subject.

I think that having someone come and stay with your father a few hours each day while you are away is a good thing to do. I would certainly try this before moving him to a new location. I believe routine is critical and, yes, your being away could cause him to have a setback. There is no doubt that mother is less anxious when I say, "I'll see you tomorrow right after lunch."

I had to chuckle about your thought of a "nanny cam." I had the same thought! However, rather than a laptop model, I was going to install a true survellance system like we use in our business. The security company would not install the system without the written authorization from the facility because they would be placing the equipment on private property. I do understand their position and have not pursued the matter further, but only because I changed my mind that the cam is needed at this time. I have not eliminated the idea. The negative feelings of others about the use of such equipment will not influence my decision. Not meaning any disrespect, I will listen to them only after they have walked in my shoes. There is no one-size-fits-all care in every case.

One other thing you might consider is the walkie-talkie type phone. Mother has one before her move to independent living, but she kept losing it. When she was able to use it, it worked great. Well, except it drove me a little bit crazy at times. She loved knowing I was only a push-button away. She has not mentioned the phone in a long time and I don't bring it up because she is doing a great job of dialing my phone number, many many times a day.

I hope something I have said is helpful to you, Maryl.

Managing care for alzheimers in independent living posted by LauraL @ 11:18 PM November 11, 2008

LauraL — Tue, 11 Nov 2008 23:18:51 -0000

MyMother'sKeeper, thank you so much for such a fantastic, supportive post! You have a wonderful creative mind in thinking of wonderful ways for your mother to interact in her own best way. THank you, thank you so much!

Managing care for alzheimers in independent living posted by maryl @ 12:39 PM November 11, 2008

maryl — Tue, 11 Nov 2008 12:39:12 -0000

Ditto about the fabulous post! The bird feeder idea is terrific and something I think my father would really like. We had a fern on his patio during the summer, just like the ones he would have on his porch at his former home and he always enjoyed looking at it, commenting about it and watering it!

I have a question for you, and I don't know if I want to know the answer to it! You said your mother is in assisted living, but healthy. My father is in independent living, but they help with memory types of things like getting you if you don't show up for meals. They also check on residents in the morning around 10:00 if their door has not been opened yet. They will pick up my father if I ask them to for certain activities (though he mostly has reasons not to go). He is able to do all his own personal care, though it may take a long time, which is fine. He usually gets to meals on his own, with the help of the signs we put up about times and directions on his front door. We thought, especially because he has always been a private kind of person that it would be better to try independent living first, at least until the personal care, ability to take medicine, etc. became a problem. I was wondering why your mother is in assisted living, because sometimes I think maybe that is where my father should be. BUT, I would hate to change his location again (change is so hard), and I don't think he wants people walking in and out! We are thinking when we are gone for a month or more later this spring, we will ask a caregiver to come like I am coming in right now for an hour or 2 each day to make sure he has taken his medicine, has the snacks and drinks he needs in his refrigerator, has his laundry where it belongs, and maybe play some games of double solitaire with him! I am really worried when we're gone and not staying on top of everything that he will go downhill and we will not be fully aware! My husband has suggested a "nanny cam" so we can see him and talk to him - possibly in his kitchen area. Lots of people seem really negative about this idea...

Everybody's situation is somewhat different and we are just trying to find ideas that will work for us, and for our family. I appreciate hearing everyones responses! Thanks.

Managing care for alzheimers in independent living posted by Judithmft @ 06:48 PM November 10, 2008

Judithmft — Mon, 10 Nov 2008 18:48:58 -0000

MMK - What a fabulous post. I am so appreciative of your very specific suggestions. Your ideas are very creative, your insight into your mother's anxiety and agitation are very compassionate, and now I feel like I have a vision of how I can handle things when my father is at that stage. Thank you.

Managing care for alzheimers in independent living posted by cincydarryl @ 01:50 PM November 10, 2008

cincydarryl — Mon, 10 Nov 2008 13:50:52 -0000

MMK- Thank you for the very helpful ccomments. It has helped me also, to understand how others will be able to help me when I'm there too. Most of my friends have no clue, so they stay away. I 'appear' ok to look at and hear speak; but I can feel 'details' slipping away from me...every month something else seems to just leave me...like handwriting a capital 'S' and other small stuff...but it's real. You give me hope that there is something that I can do now...and later on down the road.

Thank you,

Darryl

Managing care for alzheimers in independent living posted by MyMother'sKeeper @ 06:24 AM November 10, 2008

MyMother'sKeeper — Mon, 10 Nov 2008 06:24:13 -0000

Tira and Anonymous, my heart breaks for you as I have faced the same difficulties lately after moving my mother into an assisted living facility. She is 86 years old and in perfect physical health. I thought that she would enjoy all the activities offered to her and not only encouraged her to attend, but took her to the activities.

As a nurse, I quickly realized why she disliked almost all the activities. Mother is in the mild/moderate stages of Alzheimers and she quickly became overstimulated by all the noise and the crowd. Also, the Bingo numbers were called at too fast a pace for her to keep up. I praised her for her efforts and we laughed when she made mistakes. I thought she would enjoy just being at the Bingo game for the fellowship, if nothing else. Wrong. I watched her have a major melt-down each time we attended certain activities. Her confusion was remarkably worse for hours afterwards. I felt so guilty for not realizing that I was asking too much of her and I had to rethink MY ideas of what would be interesting and helpful to her.

Mother had lived alone in her home for over 3 years and suddenly she was living in an assisted living atmosphere of constant activity, crowds, strange sights and new noises. I thought she would love the fact that she was no longer living alone. Turns out she was not really lonely in her old home and was fairly content with her solitary life. I was defining her loneliness by my definition and my own feelings.

Dementia causes changes in sights, sounds, perceptions and all the other things I am sure you know about. This is why activities must be individualized and may not be anything offered by the facility. Like me, I am sure you would like to see your parent(s) participate in an activity that is mentally stimulating and, perhaps, challenging. However, this is not always realistic and those activities can create more problems than they are helpful. The idea of taking care of the plant is wonderful! If the idea did not work this time, try it again next week with a different plant, perhaps one with a bright color flower.

What has worked for my mother may not be helpful in your father's case, but I hope it will give you food for thought, so to speak.

Mother has never been a bird watcher, but now she loves it. I placed two bird feeders outside her window, making sure she could see them while sitting in her favorite chair. I visit her daily and my first questions is, "did you have any birds eating today?". This opens the door for her to tell me as little or as much as she can remember. I never ask, "tell me all about the birds you saw today." That type question puts too much pressure on her to describe everything she saw, each bird, and it is part of what you described, Tira, in keeping the questions and conversation simple and easy to follow. She always smiles as she describes the birds as being "big" or "little" and the red, blue or brown colors of the birds.

Also, to help Mother adjust to her new surroundings and meet other residents, I asked her to look in on her neighbor twice a day. I view this as an activity for her. It gives her a sense of being needed and her neighbor loves the visits as she seldom leaves her room. Another resident who has no dementia agreed to allow mother to "check on her" every afternoon. This resident lives at the opposite end of the building so mother gets extra walking exercise making the trip each day. I have a schedule, actually several of them, in mother's apartment to remind her what time she is supposed to "make her rounds."

Another activity I offered mother is to assist with her laundry by folding towels. If she has dirty towels to wash, that's fine. If not, we wash clean ones or simply go to the community laundry room and offer to assist other residents fold their towels. The other residents are happy that we are there to help. While the towels are washing/drying we sit in the hallway and greet the other residents as they walk by. This is a very non-threatening, calm and quiet way for mother to interact with the other residents. On days that I am not with her, the caregive has told me that mother sits in the hallway and proceeds alone with her "meet and greet" activity.

I never thought mother would enjoy the morning exercise class, but she now loves it. It does not matter that she cannot do some of the exercises. What is important is that she attends and does as much as she can. If mother does not show up for the class, the activities director will send someone to find mother and bring her to the class. In the beginning, mother would tell me she was too tired to attend, but she would not use this excuse with the activities director. Perhaps this might be the case with your father. Often times others can get our parent to do something that we cannot get our parent to do.

Mother still has her times of anxiety and agitation, so I keep a photo album handy to redirect her thoughts. Reminiscing works well for her and I am learning more and more about those old photos because each time she looks at the photos she tells me something new.

I have a container of coins at home. Every week or so I take the coins to mother, tell her it's my spare change and ask her to sort it for me. I provide disposable plasic bowls for her to place each type coin. I secure the bowls with putty to her breakfast room table so she cannot move them around or "hide" them. I get her started by placing one of each type coin in a bowl. It might take her hours or days to finish the task, but if gives her something to do if she needs it. This is a good task for the evening and often times keeps her from wandering. If she is anxious, I remind her to sort my coins. No, her sorting is not perfect, but that's not important. I praise her for the job and we use our "fun money" to go out to lunch.

Lastly, mother now enjoys something I never thought she would ever have the least bit of interest in. I bought her a portable DVD player and she spends every evening watching gospel music videos in bed before she goes to sleep. This has been great for minimizing her sundowning and helping her to sleep. Yes, she has trouble operating it most times, so I, or her caregiver, simply put in the CD and when she is ready to watch it she pushes the "play" button that I have covered with a big red dot. When she is done she simply unplugs the cord from the CD player. It does not matter that the CD is still playing when she does this. That poor machine is still working just find. In case you are concerned, I did check that the player is not a fire hazzard even if she forgets to unplug it, which she has not done. So, don't count your parent out if you think he/she is not capable of learning to use this type equipment. I never thought mother could do it. She amazed me.

Tira, you said your father no longer watches television. Could it be that he can no longer work the remote control? That may sound simple, but this is why mother stopped. I was able to solve the problem by purchasing a new remote that had very few buttons and I removed (using tweezers) the buttons that she did not need to use, leaving only the on/off, volume and channel buttons.

I might sound upbeat about all this and sound as if there is a solution to every problem. I know there is not and I am fortunate that what I am doing at the moment is helping, now. Tomorrow I face the unknown and I am dying inside just like you. I cry every day and grieve for the mother that I have lost. Nothing in my life, not even a masters' degree in nursing, prepared me for this and it's the hardest thing I've ever done.

Managing care for alzheimers in independent living posted by Judithmft @ 10:12 PM October 29, 2008

Judithmft — Wed, 29 Oct 2008 22:12:22 -0000

I am responding to Tira's original posting about wanting to find things her parents will/can do. I am of two minds on this topic. On the one hand, I wonder if your parents are depressed and would benefit from anti-depressant medication. On the other hand I agree with Darryl - whose to say their choice is wrong? You are right, you cannot fix your parents (we never can, but especially not at this stage of their lives). Sometimes it is a great gift you can offer to simply witness their process, and stay in emotional contact with them right where they are emotionally rather than trying to change their outlook. Doing this is enormously painful because it requires us to be in our own grief and powerlessness, but is sometimes exactly what they need us to do.

Managing care for alzheimers in independent living posted by cincydarryl @ 04:32 PM October 26, 2008

cincydarryl — Sun, 26 Oct 2008 16:32:29 -0000

I understand completely the 'speed' problem...I have it now...and need to have friends slow down thier speech...it doesn't diminish what they are saying, it's just the speed. I may need what you are saying down the road, but not yet. Yes, simple ideas are easier, but it's more the speed for me now that's the problem.

A problem I have is to type what I'm thinking. It was not meant to say that you are doing the Elder Speak, it was just something that entered my head when I was typing the reply. I'm so sorry if it sounded like a comparison. I didn't mean it that way. As you can see, I ramble on a bit. My thoughts jump around too. I do the best I can and may need to limit my contact because of it, like this blog.

The last thing I want to do is insult or diminish anyone's experiences. I guess I've only used this space as an outlet for myself too, and thanks to you and others here, I am learning much of what I need to learn, so that I can get by better in life.

Thank you,

Darryl

Managing care for alzheimers in independent living posted by Tira @ 04:17 PM October 26, 2008

Tira — Sun, 26 Oct 2008 16:17:14 -0000

Cincydarrly: When you (or anyone) have demtia or alzheimers, your desire for conversation with "college level grads" will diminish. These folks have trouble processing data, and you need to speak plainly, like you may to a child, for them to understand. I see this at the assisted living. The people speak fast and detailed to my mom, and she can't process it all. She needs just us to speak to her with just the basics, and then she is so much happier because she understands. I am not treating her like a child, I am adjusting to her needs at this time. She is a very educated person. But a conversation with a "college level grad" is going to be pretty one sided at this point.

Managing care for alzheimers in independent living posted by cincydarryl @ 03:33 PM October 26, 2008

cincydarryl — Sun, 26 Oct 2008 15:33:52 -0000

Thanks Katrina! I really liked your comments. I also enjoy the conversations I can have with 'educators' and 'college-level' grads. It's not saying that I don't enjoy talks with those that don't have it, but I do like stimulating my own mind as much as I can.

What you talked about is what I 'will' face down the road, but it only tells me to plan as best I can to put myself in the 'best' place I can find that will promote 'individuality' and not the "McNursing Home' mentality of treating us like cattle.

I recently read an article about 'Elder-Speak'. It's what professionals and nurses, also family members, do to us in our elder years. It's talking to us like we're children...baby talk...and it's just nonsense. I realize that I will run into that down the road, but it will no be pleasant, nor wanted. I say, "Talk to me like the adult I am, or don't talk to me at all!" Others will not and do not realize how demeaning it is...so a lot has to be done down the road to stop this nasty practice.

Thank you so much for your comments. I appreciate them...and I got a lot out of it, for myself.

Darryl

Managing care for alzheimers in independent living posted by katrina @ 06:59 AM October 24, 2008

katrina — Fri, 24 Oct 2008 06:59:12 -0000

My mother has memory loss and a demetia condition. She doesn't like betting games such as bingo,crazy 8s,etc. What she likes are people who are college educated. She is 81 years old and has amasters in library science...She isn't interested in gardening or cooking chatting with a group--i sometimes think groups are more difficult for her. She appreciates a one to one visit or two people visit esp.family. One to one is less of a threatening experience.

She forgets every 5 minutes and comes with the same question every 5 minutes. She wanders in the past and the present on a one to one. Right now she lives in Assisted Living Apt with other Seniots. She hates it there--even though there is a bus to go to the bank and go grocery shopping.

She lives one hour and5 minutes away. I too suffer from mild dementia and parkinson's. But I am different than my mother-- they put me on GEODON for my dementia not ARICEPT. For organizing thought and language on the page and speech it has helped immensely.

Mother enjoys looking at the newspaper every day and doing the cryptograms,word jumbles, and playing Scrabble with use of a dictionary and flexible rules that she is able to look up words before she takes her turn.

She is lonely for company that has a college degree. Trouble with Assisted Living they forget to stimulate the mind and soul. She loves church-- but anyone would get tired of their own environment--she esp. loves the church where my late father and her would attend. She would like to visit the library and talk to the reference librarian herself. Having services come into the Assisted living place is good-- due to Fuel prices, low income (SSI) I am unable to cater to her every desire for company--I wish I could. I am losing my patience both with myself at my frustrations--much more so--I used to be a very patience person-- I cared for my great uncle Ben and my grandmother and a husband with cerebral palsy. But the only advice I can offer is one to one recreational therapy geared toward their interests with a few group entertainment be it classical concerts or whatever. Her place I consider trying all the new technologys and reminiscence therapys. They need simple activites for them to participate in on a one to one or alone or with family.

I have a degree in therapeutic recreation science and served as a recreation director,volunteer director, and social workdesignee--one time one place--ask the administrator if they cator to pe-ople with forgetful conditions I used to get into medical ethic issues at that facility because he only wanted services for the people with the sharp minds. Another facility is in Houghton, NY they had a wonderful program mainstreaming the people with services on a one to one part time that is one I would reccommend--individual as well as some group activity that is non threatening and fun--like line dancing. Katrina is still frustrated she cannot take mom to live with her and the services offered in her area will not help her do that--maybe an adult home. She prefers cities not rural life. Katrina

Managing care for alzheimers in independent living posted by cincydarryl @ 06:34 PM October 21, 2008

cincydarryl — Tue, 21 Oct 2008 18:34:05 -0000

My parents are gone and I speak for myself and my Alz-like problems. I was getting pretty exhausted myself, reading all the stuff you are doing for your dad. I would be pretty tired if I was that busy. We have so much energy where we are young, then it slips as we get older...it's just normal...but try to tell Drs that!

I have done a lot of that stuff...I don't need to keep reinventing the wheel with activities. What used to impress me as a youth, doesn't anymore because I outgrew it. Can you imagine how your dad feels, at his age? Wow, how he may have outgrown a lot of stuff by now.

I like to find interests and things to do that I can do now, that promote who I am now. I enjoy just sitting and viewing the trees and life itself more than ever. It's a powerful thing to behold. So much in life is such a distraction from what really matters. Busy work is not necessarily a good thing for me...since it only passes the time by faster.

Much of my thoughts here have to do with Faith. Now, everyone has their conception of that means to them, and they shoud be respected. I have mine that tells me now that I've done a lot in my life and now it's time to come home to basics and what really matters, like sitting with family and talking to each other, like watching nature and how wonderful it is...to voting! My one big deal now!

Managing care for alzheimers in independent living posted by Anonymous @ 06:19 PM October 21, 2008

Anonymous — Tue, 21 Oct 2008 18:19:09 -0000

Thanks for sharing what is going on in what seems to be a somewhat similar situation to mine, except that it's only my father by himself. He is in a retirement community in independent living.I keep trying to think about what I will be like when I am my father's age. I do notice that I am not always as interested in getting out and socializing even now, so maybe it just gets more so as some of us age. I should keep a diary about this and reread it if and when I get to be 90! My father does not seem to get up until late. Usually he seems to have just enough time to get to lunch. He has about 4 hours until dinner, and mostly seems to go to bed early. He doesn't seem to care one way or the other if he does anything else. For now, when I am around (we will be gone next year for a month or two), I usually visit him or take him out almost daily for 1-2 hours. My sister calls him daily. We have a caregiver in on Friday or whenever we are out of town to make sure he has taken his medication. My husband takes one day to take him out, sometimes to ride the golf cart while my husband plays. I am going to try to do some things that are run by the retirement community WITH him. We'll see how that works with pumpkin decorating and taking our grandchildren to visit during a Polka party. For sure, on his own he would not go down to even watch. He kind of "smirks" when I mention them until I say I think I will come. I keep hoping that he will start enjoying the other residents enough that he will participate. I still make attempts to get him to the 3 weekly things I think he might enjoy, but if he says he doesn't want to, I'm trying to leave it alone! I feel like the parent of a kindergarener who just wants his child to participate and get to make friends. Do your parents get out of their room to eat? Maybe that is enough for my father. Good luck - I think your family is probably right. Your parents are safe and you've done what you can do.

Managing care for alzheimers in independent living posted by cincydarryl @ 06:11 PM October 21, 2008

cincydarryl — Tue, 21 Oct 2008 18:11:28 -0000

Tira-thank you for your comments and my heart goes out to you.

Just as young parents gain knowelge of how to bring up young babies and raise children, when they had never done it before themselves, so is the process of taking care of our elders as they get older and change.

Our 'young' society in America has gotten so used to accomplishing goals, competing, going all the time, working for the American Dream; that we never learned how to just live our lives from young to old. More emphasis is paid to raising children and very little is paid to taking care of our elder population, that few know how to.

I greatly admire and respect the countries around the world that revere their elders and put them first, as more of a 'thank you' for doing all they did earlier in thier lives, and can see how they deal with it much better. They know and understand how it goes.

What you described is how it is, but why is that a problem is my question? Why does our society think that that is so bad? That it isn't supposed to happen? That it is so hard to 'see' happen? Such questions are, to me, because we are and have not been conditioned to think in those terms. Our society is only interested in 'gaining' stuff and not dealing with life. We buy our way out of everything but cannot sit still and just enjoy remaing moments with others.

When my care went away, most of my 'friends' went too. Oh, they say they will be there, but they never call anymore...nor do they just talk to me anymore. Since I left work, and lost the income and insurance and am in a 'pickle', waiting for SSDI/SSI and other insurance policies to get out of the legal system...and Medicaid to kick in, etc...many left and never looked back. I have...all of a sudden...turned into a 'detractor' instead of an 'addition' to their lives.

It's just too bad that we can be so selfish and narrow-minded about such things. I have received a whole new outlook on life, since I received this 'gift'. My question is...why can't I be ok just the way I am? So what if it doesn't look like others.

It's all about fear. We can all get so scared. I had to address why I was getting all worked up about something, why something concerned my...and then resolve to do all I could about it then deal with it. I'm not the only one going thru this stuff...and it's all NORMAL.

It's just the cycle of life, not something abnormal or immoral. Don't get me wrong about any of this stuff. These are not condemnations of anybody's thoughts or actions or lack there of; but just some food for thought about dealing with them.

Good luck to you. Y'know, you can find help out there too. You can and should if necessary. These things are not easy and sometimes need coaching or counseling to get thru, if not just to get something off your chest or get some new ideas.

This column has been very good for me to get this stuff out too. I wish you well, Tira!

Managing care for alzheimers in independent living posted by Tira @ 04:01 PM October 21, 2008

Tira — Tue, 21 Oct 2008 16:01:39 -0000

I have both parents in an assisted living facility. They, too, do not want to participate in any of the activities. One thing my dad, who was a big macho man in his time, says is that the activities are childish, like the arts and crafts are in the realm of grade school projects. I realize they have to keep things simple for the folks in the home. But it is hard for my dad to accept he needs things simplified to the point of childish. My family have all tried to come up with things for them to do. We continue to ask my mom and dad what they would like to do. They want to do nothing. Not even watch tv anymore. So I have come to finally accept that with limited hearing, limited sight, shakey hands, slower reactions, slower thinking, that they just can't or won't enjoy most actitivies. Even though to us, it would drive us mad to just sit or sleep all day. That is all they want to do. I see their bodies getting weaker from lack of movement. But what more can we do? My son brought over some plants and a watering can and told my dad he could care for the plants. That seemed to be a good idea, as he had no real pressure to do anything. But felt like he was caring for and in charge of something. And he could watch the plants grow and bloom. It is all so hard to accept. I bet none of us on this site knew any of this was coming, or how it would affect our lives. I went from being a daughter to being a caretaker, handling finances that weren't mine, doctors who don't care, government red tape that even they don't understand. Feelings of sadness, loss, pity (for my parents and myself), anger, guilt. The hardest part is knowing no matter how much I do, or care, I can not fix my parents problems. I know it will only get worse for them and me. Hey, thanks for letting me ramble. I really have no one to talk to. My family says I have done all I can, and to try to get back to my life. I cry a lot.

Managing care for alzheimers in independent living posted by cincydarryl @ 01:27 PM October 17, 2008

cincydarryl — Fri, 17 Oct 2008 13:27:39 -0000

Thank you Laural! I appreciate your kind words. It can be daunting each day, just to keep my mind focussed and not in the 'bad' place of negativity...as life can throw up curve balls, etc...

My friends help out so much. I am truly blessed. That doesn't mean that I don't have bad days...it just means to me that I can still see the 'silver lining' in life yet. I've always had challenges...these are just 'different' challenges. I am not older, but in a different place than, say, 30 years ago.

My full-time job used to be working for someone else...now it's working for my health...and at the same time, trying to help someone else.

Managing care for alzheimers in independent living posted by LauraL @ 04:39 AM October 17, 2008

LauraL — Fri, 17 Oct 2008 04:39:50 -0000

Cincydarryl, thank you so much for sharing your experiences. You are a valuable resource here, and I appreciate your taking the time to share so much!

Managing care for alzheimers in independent living posted by cincydarryl @ 09:46 PM October 14, 2008

cincydarryl — Tue, 14 Oct 2008 21:46:39 -0000

You are a credit to your family and a blessing to your father. Many would not try to learn how to help, but to try to just manage it. I think this is a mistake, because as the individual changes...the management technique will need to be re-examimined and redone...while the 'personal approach' will make it's own adjustments automatically, each and every day. It would only seem to be easier in the long run to me.

Take care. Good blog topic.

Darryl

Managing care for alzheimers in independent living posted by Judithmft @ 08:18 PM October 14, 2008

Judithmft — Tue, 14 Oct 2008 20:18:03 -0000

I think my main point was that reading was a primary interest for my father, but I can see that it is getting harder for him. At some point reading may no longer be pleasurable for him. I am feeling curious about the future and wondering what will give him pleasure then? No way to know, of course, as his sensory experience of the world changes.

Your point about pace is well taken. I can see the need to follow my father's pace when I am with him and trying to support him. It has been hard to learn how to do this since he still expects himself to be able to do more in less time! But overall I get your point about following the person's own pace and interests rather than trying to foist support on them in a way that feels like "speed racer" competition.

Managing care for alzheimers in independent living posted by cincydarryl @ 05:50 AM October 14, 2008

cincydarryl — Tue, 14 Oct 2008 05:50:52 -0000

My dad was an outdoorsman...as in a logging business-in the woods of which he owned. He had a hunting camp for the family; but was also from North Dakota farm and also worked on a horse ranch out West when very young. This was not a surprise. We were just glad he 'found' his place and his own interest.

If I may note something you just blogged about above... "He still reads a lot, but I can tell it takes him longer and longer to get through things..." The irony of all this, is that your statement of his abilities makes perfect sense to me...like...of course it's going to...and why not...?

In my last job, I worked around computors a lot! In the 12 years I was there, I went from about 25-35 wpm (words per minute without mistakes and looking directly at the keyboard/monitor) to around a whopping 90 wpm (without mistakes but also correcting all errors-without ever looking at the keyboard/monitor!) by the time I had to leave on Disability!

It is almost a year since I left there...and I am down to about 20 wpm...I look at the monitor all the time...I have to look for many keys that I used to have memorized, and always...I have to look for the "Delete Key". Now, I am not a novice in this area of my life and I know that, but I do have to realize what is happening...that my memory is shrinking and I just have to put up with it. I am 'so thankful' for Spell-Check in the PC applications I use today at home, like in emails I write. I do make many mistakes...and I don't even know I am making them, until I re-read the email later on, or cut and paste it into a MS Word document...and then let that program check it out for me. I do that a lot! This all takes so much time, but then, I'm not in a hurry anymore. That's why I keep saying to people..."Don't push me! I'll get there when I get there!" It just takes me more time.

My mind is running on slow-motion, and if I try to speed it up, life goes by like a blur and that can cause disorientation, dizziness and some frightful moments for me. I would prefer to be alone than with someone that is pushy. Just because they don't have a problem going fast...or normal for them...it high speed racer for me to try to keep up.

I cringe when I hear and read about folks 'walking' their parents or siblings or friends that have memory problems. I know just how they feel, the parents and the kids too. The kids are going at their normal pace, or even much slower than normal, but to the memory victim, it's still 'speed racer' competition.

I really appreciate it when someone goes at 'my' pace and not theirs. These understanding friends are only with me for awhile, so when they go...they can pick up the pace for themselves as much as they want...no big deal...and more power to them! I did when I was in their position.

Bottom line for me...is to have a supportive network around me that understands that 'my' pace is just fine with me...that I don't want to be anywhere else but where I am. I go at my pace...and if something catches my eye...like some silly thing like a tree or bird, I would hope someone else would notice the beauty I am noticing...how much of a blessing this can be.

It's work if I'm fighting the process and how it must be. Now, there will always be a safety factor to consider...that's why I just finished a Power Of Attorney (General and Healthcare) and Living Will, just a week ago...because I may not be safe down the road, and I want someone else to be my mind and eyes and brain...as mine fails me. I just try to remember that that is why I picked the POA for me...because I trust him, especially for the time when I won't understand why. I didn't even pick a family member because I didn't trust them to work for my best interests. So, I picked someone that has proved to me that he would, by his past acts around and with me.

Good luck, and here I've gone on way too long again. I'm such a blabber mouth and so long-winded, but this strikes so close to my heart, that I have to get it out...and hope it can shed some light on the plight of people challenged by this problem.

Darryl

Managing care for alzheimers in independent living posted by Judithmft @ 01:17 AM October 14, 2008

Judithmft — Tue, 14 Oct 2008 01:17:53 -0000

Darryl,

I really appreciated your insight. It is so easy to overlook the reality of how the person with memory impairment experiences the world. My current difficulty related to Anonymous's posting is that my father's interests, while varied, seem to be shifting with the Alzheimer's. He still reads a lot, but I can tell it takes him longer and longer to get through things, for example. It's hard to know, when a person's sensory experience of the world changes, which past interests will continue and which will not. Could you have predicted your dad's interest in the animals or was that a surprise?

Managing care for alzheimers in independent living posted by cincydarryl @ 05:08 PM October 08, 2008

cincydarryl — Wed, 08 Oct 2008 17:08:48 -0000

Your father is like my parents were...very private...and not much can change that. I think he would much rather just 'hear your voice' via the phone or in person. I bet he enjoys that more than anything!

My parents were like that...it meant more to them than anything else, expecially my mother, but dad recognized it too. And, on one very specail occation (on the phone), he told me so. He NEVER spoke about stuff like that his whole life! It just wasn't his thing to do.

It is definitely very difficult for children to see/watch their parents go thru this...my dad didn't like any of that stuff...but when the Center brought in some birds and animals to cheer up the other residents, he perked right up and became the 'honorary' keeper of the pets. It was his job to make sure they were fed and ok. THAT was his interest and kept him going for some time. He just thought all that other stuff was..."foolishness"...in hiw own words. That was my dad and nobody could/would change him. We just had to learn HIS language and interests.

Ironically, it's the same for me too, and I suspect...for your father too....like it will be for you too, much later down the road...when you are in his place. Would you want someone to push you into doing/enjoying something you thought was silly/absurd/nonsense/boring/etc...???

It's quite the adventure to 'get to know' someone all over again! It could possibly spark a new kind of relationship b/t you and whomever else may be involved. Good luck! This was very good for me too, to see if I could be of any assistance to someone else going thru 'stuff'.

Less than 5% of my friends make this 'thing' I have easier for me...the rest are full of 'demands' and 'expectations' that I cannot fullfill, and they get frustrated and shy away from me. I wish it were different, but that seems to be reality.

I seem to be headed in the direction of being more of an advocate for those that cannot help themselves and don't know how to explain why. I just know how I feel...and it seems to be the same for many others.

Darryl

Managing care for alzheimers in independent living posted by Anonymous @ 04:32 PM October 08, 2008

Anonymous — Wed, 08 Oct 2008 16:32:38 -0000

I really appreciated your input. I am going to try to get my father to talk to me a little more about what activities he would like me to remind him about. He has always been generally unwilling to let us know what he is really thinking, and he pretty much just goes along with whatever. I partly think this is his "generation" -- somewhat keeping emotions, etc. private! He also really has no interests anymore that he can do on his own, or I wouldn't feel quite as motivated to get him out. I don't think he can follow television programs anymore, though he keeps the tv on in the background. He doesn't read. He seems to like (or be willing) to play double solitaire with me, though would not play solitaire by himself. When he still lived in his home in another city, my sister would take him to a senior center with an organized program once or twice a week. He always asked why he was going, but seemed to enjoy himself when he was there.

Anyways, thanks again for your input. It helps to think about it from another viewpoint.

Managing care for alzheimers in independent living posted by cincydarryl @ 03:26 PM October 07, 2008

cincydarryl — Tue, 07 Oct 2008 15:26:42 -0000

I have a 'Memory Loss' diagnosis...and I can relate completely to people with Younger-Onset Alz and much of what goes on with Parkinson's and the like...many and all of which have the memory loss and dementia.

I could be that he just does not like Bingo. I don't either...because there are usually big crowds and lots of noise. Those things irritate, confuse and distract me from doing the basics...and I truly try to do the basics as well as I can.

Try to find something that he 'does' like and then offer support and be careful that you do not PUSH him. This is very important! I just hate it when I think someone is pushing me to do something that I really don't want to do.

Just because you are able to, and think it's good; or the staff and nurses do; that doesn't mean it is...

The focus should be on what the individual is finding out what HIS interests are...not yours. This may seem insensitive and blunt, but remember (you can) what the problem is...it familiarity with one's surroundings and managing through all that stuff.

Bingo to some is fun...but to me...it's a 'contact sport' and I can feel beat up pretty bad in the process, but can 'smile' to cover it up and 'appease' everyone around me. But, on the inside...I'm jumping out of my skin!

Having said so much...I like calm/relaxing and thought provoking things to do. As I have more and more difficulty with simple things...I want to make sure that I am not 'shooting myself in the foot' by taking on activities that would 'accentuate' those 'losses', but rather make use of the senses I still have...then promote them.

Talk to him and ask him what 'he' wants to do...then promote that. Remember, he is still reeling from being 'told' what to do...he may need some time to relax and then he may open up a bit more. Good luck and keep learning...as we all are!

Darryl

Recent Posts in 'Managing care for alzheimers in independent living' | Caring.com

Managing care for alzheimers in independent living posted by MyMother'sKeeper @ 06:14 AM November 17, 2008

Managing care for alzheimers in independent living posted by MyMother'sKeeper @ 06:07 AM November 17, 2008

Managing care for alzheimers in independent living posted by LauraL @ 11:18 PM November 11, 2008

Managing care for alzheimers in independent living posted by maryl @ 12:39 PM November 11, 2008

Managing care for alzheimers in independent living posted by Judithmft @ 06:48 PM November 10, 2008

Managing care for alzheimers in independent living posted by cincydarryl @ 01:50 PM November 10, 2008

Managing care for alzheimers in independent living posted by MyMother'sKeeper @ 06:24 AM November 10, 2008

Managing care for alzheimers in independent living posted by Judithmft @ 10:12 PM October 29, 2008

Managing care for alzheimers in independent living posted by cincydarryl @ 04:32 PM October 26, 2008

Managing care for alzheimers in independent living posted by Tira @ 04:17 PM October 26, 2008

Managing care for alzheimers in independent living posted by cincydarryl @ 03:33 PM October 26, 2008

Managing care for alzheimers in independent living posted by katrina @ 06:59 AM October 24, 2008

Managing care for alzheimers in independent living posted by cincydarryl @ 06:34 PM October 21, 2008

Managing care for alzheimers in independent living posted by Anonymous @ 06:19 PM October 21, 2008

Managing care for alzheimers in independent living posted by cincydarryl @ 06:11 PM October 21, 2008

Managing care for alzheimers in independent living posted by Tira @ 04:01 PM October 21, 2008

Managing care for alzheimers in independent living posted by cincydarryl @ 01:27 PM October 17, 2008

Managing care for alzheimers in independent living posted by LauraL @ 04:39 AM October 17, 2008

Managing care for alzheimers in independent living posted by cincydarryl @ 09:46 PM October 14, 2008

Managing care for alzheimers in independent living posted by Judithmft @ 08:18 PM October 14, 2008

Managing care for alzheimers in independent living posted by cincydarryl @ 05:50 AM October 14, 2008

Managing care for alzheimers in independent living posted by Judithmft @ 01:17 AM October 14, 2008

Managing care for alzheimers in independent living posted by cincydarryl @ 05:08 PM October 08, 2008

Managing care for alzheimers in independent living posted by Anonymous @ 04:32 PM October 08, 2008

Managing care for alzheimers in independent living posted by cincydarryl @ 03:26 PM October 07, 2008