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Joined: 1/14/2015
Posts: 40463
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Originally posted by: DonM
Greetings to all,
My name is Don and I am the husband and caregiver to my wonderful wife of 46 years, she is 70 and I will the same be in Sept. She was diagnosed with MCI about a year ago and the children and I are thinking that she has slipped into AD. It breaks our hearts. Her next apt. with the Neurologist is in June so we will see what he has to say.
It is getting more and more dificult to help her as her perception of reality gets more and more fuzzy. We went to Church on Easter and she asked who the old Priest was up there (She has known him for a number of years.) All the typical symptoms are there and I have, with our 5 children come to the place where we have accepted the fact, at least intellectualy, that she is getting worse and probably has AD. Her short term memory is very bad and in the last month or so she started not remembering things from the past. We are great Baseball fans and she loves the game. The last time we went she was not sure what was going on in the game and on the way home asked me who we played and who won. It breaks my hears as she was, a few years ago, able to quote statistics and batting averages with the best of them. Today a friend of ours approached me at the store and asked me if she was alright? I said "No not really, what is your observation?" She said, "I don't mean to pry, but does she have Alzheimer's?" That was the first confirmation or impression from someone outside of the family. I am sure others have seen it but were too polite or reserved to say anything.
She also has Diabetes and her blood sugar is not too good at the moment. Her Hemoglobin A1c was 8.4 the last time she went to her Dr. I know that high blood sugar can contribute to other problems. I am having a hard time keeping her on track with diet and snacks.
I will not go into great detail here about other things but I just know that I need to connect with others going through something similar and appreciate this forum.
I will check into the chat room from time to time so we will see how that goes as well.
I am scheduling an appointment with a counselor for my wellbeing so I am trying to take care of myself.
I will look forward to continued conversations.
Don
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Originally posted by: Ruth9
It seems like yesterday we were where you are today. (5 yrs dependent on me for total care) Nothing is consistant with this diease. But if you are having a problem or just want to share, someone on here has been there and everyone is great help.
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Originally posted by: Johanna C.
Dear Don: A very warm welcome is extended to you, we are so glad you have found us.
You are not alone. You will be surrounded by caring and supporting people who truly understand what you are experiencing.
I am an RN whose mother had FrontoTemporal Dementia and whose step-father has Alzheimer's Disease.
I am truly sorry for what is happening with your beloved wife. You are doing a wonderful job as caregiver and advocate. While her Hg A1C is a bit up, (they like it to be under 7), in the grand scheme of things, this is not "too" bad.
We try to keep our loved ones in good stead in all health issues, but sometimes there are small things that need to be accommodated.
We of course try not to bring anything into the house that would be tempting, but still and all, even bread can beckon our loved ones. There is a part of me that says if they do not go overboard, perhaps it is okay to let the loved one have a bit of something that makes them feel good. You will want to discuss this with the doctor. Perhaps she/he will be able to put your mind at ease and give you some expanded boundaries.
I also want to invite you to write on the Caregiver's Forum as well as this Fourm if you wish. The Caregiver's Forum is where the majority of family and caregivers communicate and you will probably find many more responses to your writing.
In any case, we are very glad to have you amongst us and are looking forward to getting to know you better and to be there for you as you move through this experience. That is what we do here, share information and more than anything, support one another. It's also a good place to come and vent feelings once in awhile - everyone understands.
I wish you the very best,
Johanna C.
Peer Volunteer
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Originally posted by: JAB
Hi, Don, welcome to the forum. I imagine it was very difficult to hear someone else confirm your fears.
Still, you and your love may have many good years ahead of you. It sounds as if you and she are very close, and that, in and of itself, can help slow down the progression of AD. Partly, I think, this is true because you will understand more intuitively how to respond to her and help her, and partly because it helps her feel safe, and loved.
http://alzheimers.boomja.com/S...heimer-s-202948.html
There are other things that can help slow down the progression, too. Our dear Mimi has started a thread about these, which you can find at:
http://alzheimers.infopop.cc/e...75102261/m/390301843
Be sure to watch the video that's posted there.
My husband was diagnosed with moderate Alzheimer's nearly five years ago. We were able to travel some even after that, which is something you might want to consider doing while your wife is in the early stages, if you she have enjoyed traveling together in the past. My husband is now a bit too far along for us to do that any more, and it is true that he is severely challenged, physically and mentally ... but he is still a joy to be with, a sweet, loving man. There is every reason for you to hope that the love between you and your wife will continue to grow in the years to come.
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Originally posted by: DonM
Thanks to all of you for your kind and informative posts. I have been reading a lot and it does help to se others going through the same thing.
I will try to be more frequent here and hope to be able to contribute more from time to time as well.
My DW and I do enjoy going to Mariner's Baseball games and still have plans to go to Hawaii again after the first of the year. I am holding on to that as something to look forward to. The last trip was difficult for her but once we were there she did OK. She is in a wheelchair (4 back surgeries and in pain all the time) and can only walk very short distances. That part is not good, as exercise would help her Diabetes and the MCI or AD. (Still not sure what the Dr. wants to call it.) I have tried to get her to go to PT but she refuses and says it hurts too much. I am sure it does so I don't push much any more.
I alluded to the fact before that diet is difficult. I am the chief cook and bottle washer, as they say, but often she will not eat what I fix. I know from working with the dietitian at the Dr’s. Office what she should eat. I am sorry to say that I sometimes give her “comfort food” as it gives her some sense of joy in her rather joyless existence. If you asked her what her main problem was she would say her constant pain. I am not sure she would say anything about her memory loss. When we do talk about memory she says, “I worry about your memory. You get things so screwed up.” It is usually after she has convoluted or distorted some important facts about our children and their families and I try to straighten it out.
How do the rest of you deal with that? Do you try to lovingly and gently redirect and correct the facts or just let it go? Some things I can’t let go as they are detrimental to our children or have to do with upcoming events that she needs to be a part of. I will be interested to know what the rest of you have done. The difficult thing for us is that if I correct her she gets really angry. Sometimes her anger and rage are really hard to deal with. I keep telling myself that it is the disease and not her. Sometimes I have to just walk away and come back later. There has also been some physical expression of anger but nothing that I can’t deal with.
She was up most all of last night and is now asleep. (It is 3 in the afternoon) I hope I can wake her to get her on some sort of schedule again. That one is getting harder and harder.
Enough for now. I have to get the mail and pay the bills. Life goes on.
Peace and Blessings to all you wonderfully kind people.
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Originally posted by: Mimi S.
Hi Don,
Welcome to out forum, although we're sorry for what brings you here.
Three ideas: First: Since you say your wife has deteriorated since your last trip, you might want to pull down the find button and type in travel. There were recently a series of thoughts on that subject.
Second: With diabetes, diet is so important. Can you possibly work with that same dietician and brain storm things she might eat.
Third: Does she swim? The water lifts the weight off the legs and makes exercise more possible. And exercise is so important for both Diabetics and AD patients.
Good luck. There are many good listeners on these boards.
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Originally posted by: Cathy J. M.
quote: Originally posted by DonM:
I am sorry to say that I sometimes give her “comfort food” as it gives her some sense of joy in her rather joyless existence. If you asked her what her main problem was she would say her constant pain. I am not sure she would say anything about her memory loss. When we do talk about memory she says, “I worry about your memory. You get things so screwed up.” It is usually after she has convoluted or distorted some important facts about our children and their families and I try to straighten it out.
How do the rest of you deal with that? Do you try to lovingly and gently redirect and correct the facts or just let it go? Some things I can’t let go as they are detrimental to our children or have to do with upcoming events that she needs to be a part of.
For upcoming events, many of us find that it works best not to mention them ahead of time. You can experiment about this, to see if knowing about a pleasurable event ahead of time causes pleasant anticipation, or just trouble of one kind or another.
About mistaken facts in general, even things detrimental about the kids -- I'd let them go. You don't have to agree or lie -- but you can work around them. "Really!" "Interesting." "How upsetting" "When did he do that?" "Does he always do it?"
By all means tell her that her memory is getting better and better.
When she gets angry (which can't always be avoided even if you never correct her), retreating slowly and calmly out of the room (without turning your back on her) is often very helpful. A little cooling off period can help a lot. When you see her next, smile and act as if nothing had happened.
You might begin studying Naomi Feil's approach. Her books and DVD are very helpful in responding to a loved one who tends to get angry and blaming.
Validation Therapy
The video on the home page is about interacting with a person in a later stage -- but it shows something of the power of Feil's work.
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Originally posted by: jona
Hi again Don,
This is Jona, we've chatted before on the caregivers forum.
I would suggest you getting the book The 36 Hour Day, it is an A - Z book about Alzheimer's and the other dementias. It is loaded with ideas on how to handle all kinds of problems that arise with Alzheimer's. I got my copy from www.amazon.com.
I think it would be good for your wife to be seen by a geri physic, she/he would be able to help control the anger, rage, the physical expressions and distortions.
I would try to redirect some of those problems if possible. Not mentioning anything in advance is also a good technique. Tell her the day before or the day of the event.
No arguing...that is a big no, no in Alzheimer's victims. It automatically puts them on the defensive, which in turn leads to more anger and aggression. With Alzheimer's calm is what we want, the calmer the better.
You will find that sleeplessness is a common occurrence with Alzheimer's too. A low dose sleeping aide may help. Usually a busy day is better. I will leave you a PDF file with at home activities for your wife.
http://www.alz.org/national/do...chure_activities.pdf
Some of these she may not be able to do because of her other disabilities but you may be able to work around them. My mom use to love to do flower arrangements with silk flowers. We would get a vase or a basket that she liked and she would pick out the flowers and her and I would sit at the table and work at making flowers for friends and family. That would take up atleast 3 hours of a day. Then she would have to have a nap. I would try to keep her up by doing different things throughout the day so at night she would want to sleep.
My mom had delusions and hallucinations and was put on Resperdal, with in 3 days she was better and the medication helped her sleep better too.
Don, if you have any more questions ask away, we are here to answer them if we can and to support you.
All my best,
Jona
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Originally posted by: Summer_3
Hi Don. Welcome to the message boards.. you will get a lot of good information and support here.
I am sorry that your wife is suffering with so much pain along with AD.. I am sure that makes it very difficult for you to find activities for her to engage in.
I wanted to comment on correcting her vs. not correcting her when she gets important facts wrong.
As frustrating as it is....and while it totally goes against human nature, try not to correct her. You will not be able to convince her that she is wrong. Her 'memory' of events and her beliefs are very very real to her, and if you try to correct her, she will simply get frustrated. Imagine if someone was trying to tell you that you were WRONG when you knew absolutely 100% that you were RIGHT. How frustrating!! That is how she feels when you try to clear up the facts for her. It is better to just go with the flow and, if what she is saying is negative about your kids...for example "Don Jr never comes to visit and never calls here!" just go with it..say something like "Do you miss Don Jr? Maybe we can call him later. Hey, look outside, what a beautiful day, maybe we should go sit on the porch and enjoy the sunshine" Redirect her to something benign.
You will find that by not correcting her, she will be less stressed and probably more agreeable.
Since she can't really get around well, have you found activities that she can do at home that she enjoys? Many folks here have gotten their loved ones involved in simple art projects, for example.
Maybe some easy jigsaw puzzles, or some simple word search games. Things like this can help stimulate her and keep her busy since she can't do much physical activity without pain.
Anyway, that is just my 2 cents, for what its worth.. good luck to you!
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Originally posted by: Cathy J. M.
I was wondering, too, if the diabetes gets out of control sometimes and increases her irritability. I have a friend who's a diabetic, and if he gets too far in one direction -- I think it's needing insulin -- he can suddenly become impossible to deal with. At least, that's by his wife's report!
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Originally posted by: JAB
Hi, Don.
There can be many reasons why our ADLOs won't eat. Sometimes, it is due to changes in taste and smell, which makes foods unappealing. Sometimes, it is due to an inability to see and/or recognize food. The list goes on and on. There's an article that offers tips on helping our loved ones get enough nutrition at:
http://alzheimers.boomja.com/A...ight-Loss-31376.html
There is also a good article on traveling with an ADLO, at:
http://alzheimers.boomja.com/A...d-Travel-245692.html
I agree with the others who have recommended that you not correct your wife. Correcting her will confuse, upset, frustrate, embarrass, frighten, humiliate her ... but it will not help her understand your reality. If she says things that distress the children, talk with them privately about their mother's confusion. Since you mentioned they have families of their own, I assume they are old enough to understand. Hasn't anyone suggested yet that you read Jennifer Ghent-Fuller's article, "Understanding the Dementia Experience"? It's an excellent article, very helpful for understanding what is going on in our ADLOs' minds:
http://alzheimers.boomja.com/A...xperience-59731.html
It sounds like she is developing a sleep disturbance. Tips for coping with that:
http://alzheimers.boomja.com/A...turbances-61711.html
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Originally posted by: DonM
I can not begin to thank all of you enough for your kind and helpful responses to me and my questions. I will be checking out the various links, books and articles that you have posted.
We went to the baseball game last night and she seemed to enjoy the outing so that was good. We have ADA seats so she does not even have to get out of the wheelchair. It was cold and our team lost but other than that I think she enjoyed the game. Focus was a problem from time to time but that is what it is.
Thanks agin for all of your kindness and helpful suggestions.
Peace to all,
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Originally posted by: Mimi S.
Hi Don, That's fantastic that you both enjoyed the game. A loss of focus now and then is to be expected. How do you feel about leaving early if she needs to?
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Originally posted by: DonM
I don't have a problem leaving the games early. We do that a lot, especially in the spring when it is cold. It is especially true at the moment as the team is in a real slump and not playing well. lol
In response to an earlier question: She does not really like to swim and I can't get her to go with me to the YMCA where they have programs that could help a lot. We have tried a number of times to no avail. It is however a wonderful solution for those who will do it.
We have a trip planed to go to Montana for a Wedding in August and she is looking forward to that. It is really hard on her to travel but good in that it is mentally stimulating. Just getting her out of the house and interacting with people is a real chore.
I also have a problem getting her to shower regularly. Is that a common problem? When I suggest a shower and offer to assist her she often flys into a rage and says all I ever do is criticize her. At the moment she is down to a shower about once a week and that is not healthy. I keep trying.
Thanks for your reply.
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Originally posted by: Cathy J. M.
A shower once a week isn't too bad. Showering is indeed a common problem. Do a search on the forum for "shower" and "bathing" and you'll find lots of ideas. Different things work at different times.
If she reacts by getting angry and saying you're criticizing her, apologize right away and reassure her that you love her exactly as she is. I know you have nothing to apologize for at that time, but apologies really go a long way to defuse things!
When you take the trip, take lots of photos, including as many as possible where you're standing beside your wife, so the camera captures much of her view of the scene. I've been experimenting with taking photos during the day and reviewing them with my partner at night. For a memorable trip, this could make a huge difference. I'm doing a sort of "poor man's Sense-Cam."
Innovative Camera Could Help Alzheimer's Patients
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Originally posted by: inquiring mind
Don, so many of the things you are dealing with are familiar. My DW was diagnosed just about one year ago with AD. She also has diabetes, and for a time had a urinary tract infection. You have gotten some good advice already, but I want to add that you need to get her to a good neurologist, or someone who can start her on AD medications (if that's the diagnosis). My DW stabilized significantly after getting onto Namenda and the Exelon patch plus an anti-depressant. All the medication is expensive and burdensome to administrate, but I hate to think about the time to come when it is no longer effective. Definitely do not argue, I know it's difficult, but when you finally school yourself to avoid it, life becomes a lot easier for both of you. I do not have a solution for the bathing/showering issue. My wife is the same. It is very difficult to get her into the tub, and I have just learned to (as gently as possible) to nudge her in the direction of a prepared bath. Sometimes we just sit and glare at each other, and I have learned to not try to reason with her. I just announce that the bath is going to happen, and continue to reinforce that stance. I am sometimes pleasantly surprised and she just goes and does it all herself. Other times I lose and we put it off until tomorrow. Also, I believe that if you can get her diabetes under a little better control, it will be helpful. When my wife was diagnosed, her A1C was similar to yours. I began to regiment the medication, and that is now down around 7.2, and (I think) helped stabilize her decline.
I'm sorry for your situation, but I definitely understand and am pulling for you
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Originally posted by: Mimi S.
Hi Inquiring Mind.
Love that tag. Welcome to our Boards. You've certainly come to the right place to exercise your moniker.
You'll get lots and lots of advice. Also lists and lists of books to read. From where you are, my #1 thought is for you to get: library,bookstore, or on line, Jolene's Brackey's, "Creating Moments of Joy." The title says it all. Ways to turn those confrontational encounters into the title words.
Are there any Research Hospitals or Institutions that you can get to? Please call and see if they have any clinical trials going on that you might be eligible for. Diabetes is usually not a disqualifying factor. Read carefully to see what risks you might be signing up for. Friends who have done so have usually been quite happy. You get the very best in care and you become part of the future. The reason I have a purple band always on my wrist that reads: A REASON TO HOPE
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Originally posted by: inquiring mind
Hi Mimi:
I'm not as new as it appears. I lurk religiouosly. I don't post often, but I found this place soon after "our" diagnosis. I'm grateful for all the knowledge that appears here on the board. It was my intent to share my experiences with Don, since it sounds as if he is almost exactly where I was about one year ago.
I do have one question, though. In my readings here or some links from here, I read that the average life of an Alzheimer's patient is something like five plus years after diagnosis. I hope I didn't misunderstand what I was reading. But I was wondering if there is a similar statistic for the efficacy of various medications such as Namenda, Aricept or Exelon? I know that they are supposed to delay the loss of cognition, but I have never heard how long (statistically) this delay is on average. I'm hoping to hear that average time is on the order of four or five years??? Have any studies been done on this aspect?
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Originally posted by: Carolina Songbird
quote: Originally posted by inquiring mind:
In my readings here or some links from here, I read that the average life of an Alzheimer's patient is something like five plus years after diagnosis.
I have heard this statistic but I don't trust it, since diagnosis is such a hard thing with this disease. Mom's symptoms started about five years before we finally got her to see a doctor who made the official diagnosis. Her old doctor said "normal age-related memory loss." Right.
It's been five years since that diagnosis, and we are in final stages, but a more "with it" doctor would have probably diagnosed her at least two years earlier.
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Originally posted by: Mimi S.
Hi Inquiring Mind,
Sorry, but I don't believe an answer to your question exists. There is a common expression in the AD world" Once you have met one AD patient; you have met one AD patient.
I think it was as recent as 20 or so years ago, most med students learned little about AD in their training. It was not expected that they would likely ever have such a patient.
At exactly what point does AD begin? No one has any idea. Right now we don't even really know if those tangles in the brain there's so much research on are a true sign? How come post- mortem, some patients with no dementia symptoms have them and some very demented patients have none?
And finally, people are diagnosed at all different stages. I, for example, was diagnosed very early and now, more than three years post diagnosis, due to Best Practices, I'm still cognitively ahead of where I was when dx'd. (Where do you begin the count?) If I wasn't as old as I am, I'd laugh at some one said I had less than two years to live. (I'm in my 80's.)
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Originally posted by: Iris L.
quote: Originally posted by Mimi S.:
I think it was as recent as 20 or so years ago, most med students learned little about AD in their training. It was not expected that they would likely ever have such a patient.
I went to medical school from 1971 to 1975. I don't remember spending much time on Alzheimer's disease. I think that's because more people died from heart disease, stroke and cancer before they were old enough to be afflicted with Alzheimer's disease. Also, I think those people who did survive to become elderly were just expected to become "senile", that there was nothing that could be done, and there was no point in bringing them in to see the doctor.
Iris L.
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Originally posted by: DonM
Hi,
Inquiring Mind thanks for your reply. I am sorry that you are having to deal with this with your DW. It is so sad to have someone you love so much begin to change into someone so different. My heart breaks not only for what is going on with me and my wonderful wife but you all as well. It gets much more personnel when you begin to share here.
Once again I thank all of you for your help. We had a very difficult day today. My DW got out of bed this morning by sliding to the floor and sitting there by the bed. Her back hurt a lot so she would not really try to get up. She can only do it by getting on her knees and then pushing up by placing her hands on they seat of a chair or her walker. She got argumentative and would not do anything. After two hours I called our daughter (she lives close by and said she just dropped by - not uncommon) and she came over. She would not do anything for her either.
She did not sleep very well last night and she started falling asleep while sitting on the floor. In the middle of talking to us she would fall asleep. I checked her blood sugar and it was 168 so it was not low. We finally called the paramedics after it became evident that she was not going to get up. She had been sitting on the floor for 4 hours by that time.
She said we were trying to hurt her and she did not trust us and we could not touch her or help her. She was really angry that we called 911 but we had no choice.
Long story short - they came checked her out - got her on her feet - to the bathroom - back into a chair and said all her vitals were fine and since she did not want to go to the hospital they left. Thank God for the EMTs.
Tonight she sat on the deck for a while and we talked and she calmed down. I think she had forgotten that I called 911.
She is now asleep on the couch in the family room and I am trying to get some rest.
I would appreciate any advice on getting her to trust me. I talk softly, don't demand or command, but rather suggest. I try to smile and be upbeat but I know she sees through it all. I am very frustrated and a bit worried that I am not doing very well with managing her. I don't want to be her boss - I want to be her husband and her friend.
How does one help their spouse to do something that has to be done, like get up off of the floor? When the EMTs asked her to get on her hands and knees and then to the walker and then stand she did it. (With assistance from them) but she would not do anything for me or our daughter.
Any suggestions would be very helpful.
BTW she does have a good neurologist and will be seeing him again in June. I am going to give him a list of things that we have observed before the visit as she said I can not go in to the visit with her. If I am of track here let me know.
I am hoping he will start her on some medication as she is not on anything for her memory at the moment.
Thanks again for all your kindness and support.
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Originally posted by: Cathy J. M.
Isn't a glucose level of 168 high? Is your wife taking insulin?
You're being too patient, I think, about waiting for the June appointment with the neurologist. Call! Let him know what's going on and ask for an emergency appointment. Most doctors have assistants who have more flexible schedules and who can help with emergencies. As time goes on, there may be more emergencies so you need a relationship with a doctor who will handle them with you right away.
Sometimes it helps to calmly back away and let the loved one cool off a bit. If that doesn't work, call 911. It may be that the only way she gets to the neurologist or a geriatric psychiatrist is via an ER visit from 911.
I'm sorry I don't remember if you have a Power of Attorney for Finances and also one for medical help. Both are important.
You've put your finger on one aspect of the problem. She sees that you're frustrated and worried about what to do. Our loved ones respond best to confidence -- but how are we supposed to learn to be confident when we're baffled about what to do? It's very hard!
I get confidence partly from studying books about how other caregivers handled situations that baffled me. For example, one tip -- for an emergency like the one you described -- is to leave for the cooling off period and completely change your appearance -- different shirt, hat, etc. Come back in another door. Act confident and happy.
Study the Naomi Feil books and DVD too. They're not easy to grasp so start now; you need them! Meanwhile, call the neurologist. With the diabetes as a complication, you can't wait till June.
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Originally posted by: DonM
quote: Originally posted by Cathy J. M.:
Isn't a glucose level of 168 high? Is your wife taking insulin?
She is taking insulin and we are having a hard time keeping the numbers down. We are actually pleased when it is around 150.
You're being too patient, I think, about waiting for the June appointment with the neurologist. Call! Let him know what's going on and ask for an emergency appointment. Most doctors have assistants who have more flexible schedules and who can help with emergencies. As time goes on, there may be more emergencies so you need a relationship with a doctor who will handle them with you right away.
I am writing up some notes to take by the neurologist's office. The appointment is the 2nd of June so I don't think I will have the date changed.
Sometimes it helps to calmly back away and let the loved one cool off a bit. If that doesn't work, call 911. It may be that the only way she gets to the neurologist or a geriatric psychiatrist is via an ER visit from 911.
I'm sorry I don't remember if you have a Power of Attorney for Finances and also one for medical help. Both are important.
I do have all the Power of Attorney things in order. Thanks for asking.
You've put your finger on one aspect of the problem. She sees that you're frustrated and worried about what to do. Our loved ones respond best to confidence -- but how are we supposed to learn to be confident when we're baffled about what to do? It's very hard!
I get confidence partly from studying books about how other caregivers handled situations that baffled me. For example, one tip -- for an emergency like the one you described -- is to leave for the cooling off period and completely change your appearance -- different shirt, hat, etc. Come back in another door. Act confident and happy.
Study the Naomi Feil books and DVD too. They're not easy to grasp so start now; you need them! Meanwhile, call the neurologist. With the diabetes as a complication, you can't wait till June.
Thanks so much for all the advice and for caring. I hope things age going OK for you as well. We are going to try to have a good Mother's Day.
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Originally posted by: Starling
Don, how is she going to get to the doctor's visit? If you are the one taking her, don't ask. Just take it for granted you are going in with her and go in with her.
I'm learning more and more that just taking it for granted that A, B or C is going to happen, and then moving towards that is what works.
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Originally posted by: JAB
quote: I do have one question, though. In my readings here or some links from here, I read that the average life of an Alzheimer's patient is something like five plus years after diagnosis. I hope I didn't misunderstand what I was reading. But I was wondering if there is a similar statistic for the efficacy of various medications such as Namenda, Aricept or Exelon?
Hi, Inquiring. I have seen studies that concluded the average life expectancy is in that neighborhood. Other sources cite 8 years. But all agree that some ADLOs live as long as 20 years after diagnosis, and I remember one of our members here whose husband only started to decline significantly about 20 years post-dx.
The AD meds help slow down the progression of symptoms, but do not seem to extend life expectancy ... possibly because the "average" AD patient (if there really is any such thing) typically dies of something other than AD -- cardiovascular disease, pneumonia, etc.
Many factors affect how long an AD patient will live, and how good that quality of life might be. If you haven't read Mimi's thread on this subject -- DO!
http://alzheimers.infopop.cc/e...75102261/m/390301843
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Originally posted by: JAB
Don, it is quite possible that the "slide" to the floor caused your poor wife a great deal of pain. An accident like that, even if it did not involve pain, can cause a temporary, sharp decline in cognitive abilities. Your wife may not have remembered how to get back up, or understood what you were telling her, and naturally didn't want your "help", since it hurts.
By the time the EMTs arrived, she may have had time to recover, cognitively speaking. Or she may have been able to "compensate" due to the stimulus of having strangers there. Often, our loved ones function better in the presence of others. (It can be exhausting for them, however.) You may find that she does better if you hire a part-time caregiver.
Has she been referred to a pain clinic? I think the highest priority here is to get her pain under control. None of us functions well when we're hurting.
Bathing is frequently an issue with ADLOs. Here are links to a few earlier discussions about this:
http://alzheimers.infopop.cc/e...14102241/m/472107621
http://alzheimers.infopop.cc/e...14102241/m/979109831
http://alzheimers.infopop.cc/e...071096802#2071096802
Also, here are some articles on the subject:
http://www.dailybreeze.com/lifeandculture/ci_10612072
http://www.bathingwithoutabattle.unc.edu/creative.htm
http://www.caring.com/articles/how-to-bathe-mom
http://www.caring.com/articles/alzheimers-bathing
Note: AD meds are not "memory" medicines. They help the brain function better.
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Originally posted by: jona
Hi Don,
I was wondering how your wife and you were doing, I hope she had a nice Mother's Day.
All my best,
Jona
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Originally posted by: jona
Hello Inquiring Mind,
My name is Jona, I would like to welcome you to the Alzheimer's forum. I can see that you have been here for a while, it's good to see your post.
Please, post as often as you like.
All my best,
Jona
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Originally posted by: Johanna C.
Hey There Don: You are doing an amazing job - your wife is blessed to have you by her side.
I wonder if you may be dealing with the consequences of one of those notorious "silent" urinary tract infections. These UTIs are called, "silent", because there are few to no symptoms, EXCEPT a more negative change in behavior. These UTIs happen with quite a bit more frequency than most realize.
Once treated, the person usually returns to baseline function. My mother would get these several times a year and the only way I would know would be increased stubborness, heightened irritability and nastiness to those around her. Sure enough, just about every time, it was a silent UTI.
I am glad you have a Neuro appointment coming up and you are SO smart to send on your information prior to the meeting. I did this for every appointment and it made the exam more relevant which meant the visit outcome was much better and it helps our loved one's maintain some dignity in that we don't have to talk about them in front of them - imagine the anger that conversation would induce!
When all lesser measures failed with my mother, our Neuro began a very low dose of Risperdal which was amazing in helping her. In fact, my, "I will never bath again in my lifetime" mother, began to enjoy the baths. No more rigid false beliefs (delusions) and the irritability and negative behaviors evened out very nicely. However, every patient is different.
Mom was lucky in that there were no side effects and the med was tolerated well. It meant so much to the quality of her life. Imagine; if we feel undone by their behavior, just imagine what it is like to live inside their heads believing all those things - whew!
In any case, we are glad to have you amongst us and are sending you our best wishes,
Johanna C.
Peer Volunteer
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Originally posted by: PeriwinkleBlueDaughter
Don, like you, I am new to these boards, so I can't add anything substantive to what others have posted.
However, I'd like to say that I'm touched by your obvious love for your wife and your dedication to your marriage. I pray that your wife's condition progresses slowly so that you'll have many more good days together. Take care.
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Originally posted by: Mimi S.
Hi Periwinkle Blue Daughter,
Welcome to our forum and I do like your wish for Don's wife. And those of us already with the disease, have the same wish for ourselves.
Would you like to tell us something about yourself and is your connection to Alzheimer's through a parent?
Love that periwinkle blue color!
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Originally posted by: DonM
Hi,
Just a short note to let everyone know that i have an appointment with a psychologist today to check on how I am doing. I am hoping he will help keep me grounded and give me some advice on how to deal with some of my feelings that I know are a bit off.
My DW had a fall in the bedroom (She was not hurt at all.)While we were talking to our Daughter in PA. I was in the other room on another phone. When I came in she said it was my fault and that I had pushed her. She kept saying that I was trying to kill her. the good news is that it only took an hour and 1/2 for her to get up. And then she took a shower, (The first one in 2 1/2 weeks) so that was wonderful. After she calmed down the rest of the day went well and she actually ate her dinner. (I don't think she really likes my cooking.)
Thanks again for all your suggestions. I have ordered the book, The 36 Hour Day, and it should be here in a few days. I will also be checking with her GP to see about the UTI.
Periwinkle and others, I thank you for your kind words.
Have a great day, all of you, and thanks again.
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Originally posted by: Mimi S.
Hi Don, The 36 Hour Day is great as a reference, but you might get more help for your immediate problems from Jolene Brackey's, "Creating Moments of Joy." Your library should either have it or get it for you within a few days.
Good luck with the apt.
Thanks for keeping us in the loop.
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Originally posted by: DonM
Hi Mini,
I have just received the 36-Hour day and look forward to reading it. I have also ordered "Creating Moments of Joy." I need a moment of joy at this time. We spent last evening in the ER after another 5 hours on the floor with refusal/inability to get up and 911 called for the 2nd time this week. BTW - no UTI. She was released and we came home about midnight. I was hoping they would keep her for assessment - mental and physical - but they said they could not.
We are working on getting Home Health Care to come out to the house but last time they said they would not because she is still able to get out it I put her in the wheelchair - car - wheelchair etc.
Needless to say i am stressed. I think she may be getting incontinent as she wet the bed last night. This is the first time that this has happened.
Hoping to get her out for a bit today. she has an eye apt. (Important for the check up as she is diabetic.)
Thanks again for all your help and kind suggestions. I am sorry that I seem to be contributing little here except my own problems. I have given our children a link to this site so they can be informed as well.
Oh, BTW, my visit with the psycologist, for my mental health, went well, I think. (First one.)
Peace,
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