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Very heartfelt hellos.
You both wrote some very important letters. I don't have dementia, but I am struggling on how to "treat" my step-dad. I am the only one who tries to deal with him honestly...The people at the assisted living place treat him as a child. It's frustrating for both of us. These people have the best intentions, but they don't know him like I do. They treat him like he's a child or totally helpless. Granted, there are many times he acts like a child and is totally out of touch with what's going on around him. I see that sometimes he doesn't mind, even likes the extra pampering sometimes, but there are times when he is in-the-moment and doesn't understand why these people are treating him this way.
When he is "there", he asks me all sorts or questions about his home, car, and medical things...Things I have to tell him that may hurt him, like he lost his license and can't pass the tests to get it back, or that we have to sell the house, or that his memory most likely will never improve. I can see how much it bothers him sometimes, but I have always told him I would never lie to him. Sure, I always try and put things in as nice of view as I can, but I don't out-and-out lie to him ever. I know when he is lucid that he knows he can trust me and he expects me to tell him the truth especially when he asks about his health. I feel it's important for him to know he can trust me to be honest.
So, I was wondering if I am helping or hurting? Do I put a rosy picture on everything like everybody else, or do I do what I'm doing and comfort him when he feels the lose? Only you know how it is on his side of the dementia issue and I would find it helpful to understand your feelings on this situation. I want to always do what's best for him.
Take care.
Tracy J
Hi Tracy, I understand your question about lying or being honest. My father-in-law's home care nurse kept saying don't treat him like a child and yet her behaviors are like treating him as a patient. Since he is quite sick in his mind now and is very confused, at times we have to cope with it by saying something positive although it may not be true. He does not admit Alzheimer's at all and so we cannot say it without upsetting him. Now he ignores it we say dementia or Alzheimer's. In fact we don't say the word anymore. We just say "he is confused" or "old age". In order to keep it at peace, sometimes we just tell him the partial truth. He cannot remember it the next day now. So it does not matter anymore. It seems your step-Dad is able to know what you are saying at the moment. It is good. In the later stage, it won't be possible to tell the truth. My father-in-law does not understand 100% what we are saying, truth or not.
Nina
It is indeed a dilemma. It is the same with any other type of disabilities and problems. For example, if one is cancer survivor, does he/she go around telling people that? I felt that it is only needed to say so when it helps people to cope with it. In a way, some people need to know, e.g., the family, in order to cope. For example, I never understood Alzhemier's until my father-in-law was diagnosed with it in Nov. 2006. Not that we need to announce it in a degrading way, but if it helps, then it is ok to say it.
It is not a shame. Why should we be afraid of saying it just because some people thought it is a shame or the end? That is true that you don't need to go around saying it. The reason that Reagan or Charles Heston said it was to make people understand this problem. If it is positive, then it is ok to say so.
Nina
Hi, Carla. Thanks for your comments. I have always been a very private person, yet when I was diagnosed with dementia--and had time to digest the diagnosis--I decided to use it to increase an understanding of those around me of what dementia is. Unfortunately, I overestimated--or underestimated, maybe--the effect the news would have. I have learned my lesson... Like you said, tell if it will help people cope. Other than that, just don't talk about it. I think that will be my mode of operation for the future.
Leah,
Just between you and me, I sometimes wonder if some neurologists truly understand what dementia is. From your writing, I question the diagnosis. You appear to be one of the least demented patients I've run into. I can't help wondering if you have PAP reversible OSA symptoms (I'll put my money on it).
OSA, in my humble opinion, is a, if not, the cause of Alzheimer's Disease and/or the other dementias. Evidence to support this idea is accumulating rapidly.
If I'm right or wrong, you should stick to your PAP machine 100% while asleep (I prefer APAP)*. As important, is a program of doggedly determined daily exercise and healthy weight reduction diet. When your weight is within the normal range by BMI and body fat % is within the normal range for your profile, recheck for "dementia".
You may be unchanged, worse or who knows, even better. I'm betting and will be disappointed if it's not the latter.
*The advantage of APAP is that the computer chip in the machine determines the correct pressure for each breath. It's like having a CPAP titration for every breath you take, whereas the CPAP machine knows only one continuous pressure and has to be periodically titrated every few months at the cost of PSG at the sleep lab.
Hi, Mack. Thanks for the compliments! I can appreciate your questioning of my diagnosis. Though I would like to think differently, I truly believe the diagnosis is pretty accurate. At the very least, I do suffer from severe short term memory loss. Using the CPAP machine at night HAS helped me in a couple of areas. When I awake, I am alert. That's a big change. My energy level during the day is higher. But I haven't seen any change in my short term memory... And, my intelligence level doesn't seem to be increasing...(I have lost 30 points or more).. Luckily, most of my communicative ability is stable as it gives me an outlet for dealing with my disability. I do hope more research wil be done on the relationship of OS and dementia. BTW, I may try the APAP in the future. Thanks for your comments!
Hi Leah - good to hear from you again. My two cents: we all make adjustments to how we portray ourselves to others. We do this all throughout our lives, in diffferent ways, with different people. I think it's because these kinds of illnesses or even difficult times in our life help define us, and so we simply are telling others who we are. The trouble is we all have expectations and they are most often followed by disappointments. So sometimes it is ok to hold back; less is more.
I commend you for doing what is best for you - you are strong and are setting a positive example for us all.
Many Blessings and all the best, sue (moderator)
Read about the basics of Alzheimer's disease as well as the differences between it and many types of dementia.
Hi, Sue. You are so right about making adjustments throughout our lives in how we portray ourselves to others. Our minds are constantly--and often unconsciously--are monitoring the reactions of others and mulling over the effects. We then consciously--and often unconsciously--make the adjustments necessary to get the effect we want. I shouldn't be surprised about negative effects where dementia is concerned. For most of civilization, people suffering with this affliction were deemed CRAZY and set aside from society... I hope sites such as this will help change the viewpoint! Thanks for your support.
Leah
It also saddens me to hear and to see how people treat people who are diferent. I have found out to that people don't understand what dementia is but if you say alzheimers they understand. You are a very amazing person. I just want to say I am so sorry for not being on for awhile but my father-in-law who also had dementia passed away last month and it was very hard.
Hi, Carla. Please accept my condolences. Your loss is very heavy at this time. I appreciate that you have responded at such a difficult time. Thank you for your support. Even though I do not know you, it means a lot to me to know that I have touched your life enough to have you continue to read my posts. Together, with thousands of others...we might help change the viewpoint of society--and possibly get Congress to allot more money for research!
Bless you, Carla. Take care.
Leah
Dear Cuz
As you explained your situation when you saw those friends from years ago--my heart went out to you.
It saddens me.
I guess I am a pollyanna too--I hoped [prayed] that you could be open/honest with people and they would respond warmly, embracing you, enjoying you for the warm, loving person you are.
I understand your delimma--If I were in the same circumstances, I guess I would make the same decision --not to open up about your illness. As you say, unfortunately most people do not understand what dementia is...and I might add nor do they take the time to learn. They simply act as if it is contagious.
How sad for them!
How wonderful for you that you had such a high IQ to begin with--for someone like me [with an above average intelligence] I would be hurting [smile, wink].
I enjoy your humor, your wit, your intelligent writing and conversation--you are truly a remarkable woman! I am looking forward to many, many years of continued love and friendship with you...10, 20 at least!
Hugs, Connie
I have a blog about my husband called:
Dementia: Closer to God www.bevhamilton.wordpress.com
I too have been put off with the word Dementia because he is much more than his
diagnosis or brain functioning. I write about his absence of time and his desire to express happiness. He seems to have developed a right brain sensitivity that is constantly surprising me.
I wonder if some people reading this might be interested in snippets from my diary. I look after my granddad who has dementia. I have had lots of feedback from people saying how comforting it is to read about other people in their situation, so please direct them through too http://www.wellbeingmagazine.co.uk/article/dementia
enjoy!
That really helped me. Now I know my grandpa could be okay... And get through this. He was recently released from St. Francis in Tulsa, Oklahoma. He had double pneumonia in both lungs. I was blessed to know he made it through that. Now doctors are saying things are wrong and they keep diagnosing him with many different things. Different doctors say he needs different things. Thank you for the uplifting and the new hope.
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When someone I know dies, and they had been living with the diagnosis of Dementia, probably of this or that type...
I didn’t know Charlton Heston personally. I only knew him through the “make believe” of the movies. Someone found the press release he read announcing his
diagnosis of Alzheimer’s disease, and I just re-read it. To me it was in effect his announcement of
the beginning of his “long good bye.” Reading it
reconfirmed for me that many, too many individuals, even those
diagnosed with the disease see the diagnosis as the start of a long
“good bye.”
We announce and prepare ourselves and others to the fact that we have
already started to fade away. It started the moment someone in a white
coat told us "You have Dementia, probably of this or that type, and
certainly with these features." I'm on my way out! It's all downhill
from here! Don't look for me anymore; I'm going to be busy fading away
and not being me.
We are seldom seen post diagnosis. We seldom speak up or speak out
post diagnosis. (How many famous people have you seen or heard from after they announced they had been diagnosed with Alzheimer’s disease? Where do they go? What do they do?) After all we are fading away. What could we have
worthwhile to say? Could we possible grow as a human being after we
have been diagnosed? We become someone we would be embarrassed to be
were we capable of appreciating who we had become!
Are we? Will be embarrassed for ourselves? Who is embarrassed for
whom? How do you know I'm not accepting, perhaps even contented with
who I am today. Even if I'm sometimes frustrated; even if I'm
sometimes agitated; I'm still me!
Isn't it time others who don't live with the diagnosis focus their
energies on understanding, appreciating, supporting, enabling those of
us who do live with diagnosis? Don't concentrate on who we were? Don't
try to convince us we should hang on to yesterday, or last year, or
fifty years ago – especially when we are struggling to understand today!
Wouldn't it be easier to love someone we believed was a whole person,
instead of someone half empty? Or even worse, someone who others refer to as the empty
shell of who they were?
Is it any wonder people find us hard to love when they find us so hard
to understand? to appreciate for who we are? to accept our changes,
our symptoms, our forgetting and confusion. Of course it is. Some
people with dementia and many caregivers keep saying “good-bye.” I, and
I honestly believe every other person living with and in dementia, need
to hear, feel, and be supported by saying "Hello!" and hear others say to me "Hello." I need others to answer my “hello” with today – not yesterday! This is not an issue just for those in the late stage of the disease, nor just for those in the mid stage of the disease. It starts the day the diagnosis is pronounced. Collectively, and individually we need to
find the courage, the support, the understanding to say “hello” to
ourselves and each other.
Every day! Every day! It's that simple! It's that easy! Reduce stress,
increase the quality and quantity of the love you give and receive, enjoy and live in today.
"Hello"
Richard
Hello, Richard!
You so eloquently said what I was trying to write. Thank you from the bottom of my heart. I feel that I have so much more left to offer...to learn...to experience...to give... I am so glad that I have the opportunity to write this blog as maybe--you, and I, and others who are able to communicate well enough about what is happening and what we are feeling--maybe WE CAN MAKE A DIFFERENCE.
Once again. Many thanks for your comments!
Leah