My Personal Advice And
Experience With Dementia
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My Advice: What worked for me
1.) Do not correct or argue with your loved one.
Often the patient is very much aware at the onset of this condition, even though they may be saying or doing strange things. If they say something that is not right, correcting them only gets them angry and frustrated. I quickly learned to "humor" my mother when she said something like, " There are holes and tears in all of my clothes .. somebody came in here and ruined them all" . Instead of telling her that her clothes were fine, I would tell her not to worry, that I would sew them up for her and make sure nobody got in the house again to mess with her clothes. This would appease her and we'd have no problem. My Dad, on the other hand, insisted on "telling her the truth" which made her angry and aggressive. She resented him very much for that and often threatened to leave him if he couldn't believe her. It took him quite some time to learn that he had to "humor" her like I did, if he was to get any peace at all.
2.) Get an ID bracelet or medical bracelet for your loved one to wear.
The dementia patient often becomes confused and disoriented and may wander away from the home. They also may not remember their own name or where they live .. a bracelet helps identify them for authorities. You should have your name and phone number and/or the patient's doctor name and phone number on the bracelet, as well as the patient's name and address.
3.) As soon as you realize that your loved one has this condition, TAKE AWAY THE CAR KEYS !!
Many people think that they don't have the right to do this, but I can assure you that if you do NOT do it, your loved one will either end up lost or in an accident sooner or later. You must remember that you have to keep your loved one safe and in this case, others safety is under consideration too.
4.) Do not leave your loved one alone.
Often your loved one will forget such things as to turn off the stove or or even to eat.Common sense should tell you that a person like this should not be left alone. There are wonderful adult day care centers out there, some dealing specifically with this condition. Help is also available through the visiting nurse programs. If you can't be there to watch your loved one, you must find someone who can. Do NOT kid yourself into thinking that the patient isn't "that bad" yet; you do not know when "that bad" will occur.
5.) Make sure the neighbors are aware of your loved one's condition.
Neighbors often look out for one another, and informing them of your loved one's condition is just alittle added assurance that someone is nearby in case of an emergency, or just to keep "watch".
6.) Join an Alzheimer's Assoc support group
These groups also deal with dementia and are very helpful in that they provide information for services, as well as an opportunity to meet and talk with other caregivers who will share with you what works for them. Sometimes it just helps to know that you are not alone.
Needless to say, every dementia patient is as unique as we are, but these tips should work for all. You may have to discover for yourself what will or won't work for your loved one. Nothing is in stone here, and I sometimes had to change my tactics with my mother to get her to cooperate. Above all else, be patient, loving and understanding. This is not always easy to do; these patients can frustrate you if you let them.
My Personal Experience
August 20 1925 - May 1 1997
It was early 1992 when my family first noticed signs that something wasn't quite right with my mother. She was forgetful and ornery. Not like herself at all. At first, we didn't think too much of it, but as time went on, she became more and more forgetful and soon began to say strange things. We would be having a conversation about something when out of the blue, in mid conversation, she would say something totally unrelated to the subject at hand. For example, if we were discussing the weather, she'd pop out with " well, I won't let her do that again" .. leaving us to wonder who, let alone what she was talking about. If we asked her what she meant, she would get upset with us for not following the conversation. Or sometimes she would say that she didn't remember even saying it ! She thought we were nuts ! We called a family meeting one day to discuss what might be going on with her, and decided that she should see a doctor. Her doctor recommended that we go the Community Hospital where they performed a series of tests. Basically, they were mental exams. Mom could not draw the face of a clock for one of these tests. We were told that she had dementia; cause unknown at the time, but mini strokes suspected. After talking with her doctor again, we were told what we could expect; I don't think any of us really quite believed it yet. Mom was always as sharp as a tack and had a memory that was phenomenal. She was very intelligent. But time proved the doctor to be right .. she became more and more forgetful, sometimes talking as if she were in another time, sometimes mean and nasty with my Dad, and finally she became delusional; thinking that her pants had 3 legs on them, or that the chairs kept rearranging themselves. It was heartbreaking. I would always tell her that she was right; her pants DID have 3 legs in them ( I'll fix 'em Mom) or yes, the chairs do seem to be in a different position (I'll find out who's doing it, Mom, and make them stop)
Mom began to live more and more in the past. She would often say things that would pertain to past experiences such as when she was a teen or a young mother in her 20's. Yet she still knew US .. it was very strange. I must admit, as hard to deal with as it often was, there were times you couldn't help but laugh at some of the things she came out with. Several times she said she was having a baby (at 68 ?) or she would ask us if anyone was watching the baby. There hadn't been a baby in the family for years. Bless her heart, she loved kids.
Mom couldn't be left alone anymore and we all had jobs so the only choice was to put her in adult day care. At first, she raised holy hell about going, but when I explained that it was a group for socializing, making friends and doing crafts, she relented and gave it a try. They were fantastic !! God bless those people. We were fortunate enough to find a day care with experience in dementia and therefore, they knew how to deal with her. She actually enjoyed going, and it was a big relief to us to know she was safe. At night, Dad did his best, bless his heart, but he still wasn't sure how to deal with her sometimes and they argued alot. He would call me crying and upset until he finally realized that telling her what she wanted to hear was the only way. Now, this does not mean that you should let them do anything they want, especially if it is unsafe; but to work around it. Anyway, she was in day care for about a year. At that time it became evident that she needed to be in a nursing home. She had become aggressive, sometimes striking out at my father or someone else and Dad could not take care of her at home anymore. She had lost control of her bodily functions and had trouble walking ( she just forgot how) She lived more and more in the past. Yet, even then she still knew who we were. So when the day came to put her in the nursing home, she said to us "How can you do this to me ?" I can tell you that was the hardest part of all. We knew there was no choice, however, and so just did the best we could by her, in going to see her daily, etc. The first year, my Dad couldn't bare to go there alone, so every night after dinner (we started feeding him at my house, to make sure he was eating right) I went up to the nursing home with him and we would feed her and put her to bed ourselves instead of letting the nurse's aides do it. It was our way of "doing something" .. anything, because we felt so helpless. Plus, I like to think that she knew a loved one was putting her to bed .. not a stranger. Don't get me wrong, the nurse's and aides were wonderful ! Anyway, that went on for another year, until my sister moved back from Florida to help. God bless her ! I was pretty burned out by then, having my own family and job. We then took turns, every other night going up there with Dad. Whoever had him for dinner that night, was the one to accompany him to the home. Mom steadily got worse, until she only recognized us once in a while. Most of the time, she was lost in some strange world that we couldn't get to. Often she would say she was having a baby (Mom was 69 yrs old at the time) or she would talk about times that she remembered from long before I was born. The last month of her life, she did not recognize us anymore, or if she did, was unable to let us know it. Mom developed pneumonia from inactivity and passed away on May 1, 1997; a mere 1/2 hour after my Dad and I left her. I remember telling her that night that it was ok for her to go. It was time for her to go "home" to her Mom and Dad. Never did I really think it would happen that night. Many times I have regretted that I did not stay with her that night so I could have been with her when she passed. It was kind of uncanny also,that she should pass that night, as the entire family met at my house to discuss what plans, if any, we were going to have in regards to our parents 50th wedding anniversary which was in late May. My brothers and sister were waiting at our house when Dad and I got there after leaving Mom. We had only begun our meeting when the call came, so we were all together to share the sad news and go back up to the nursing home to say goodbye. I was so glad we did. She had such a peaceful expression on her face; something I hadn't seen on her for a very long time. As dearly as we loved her, and hated to lose her, we were all relieved at last to know that she had found peace and didn't have to suffer anymore. Dad still came to my sister's and my house for dinner every other night for the next year until he was too ill with cancer to come to my house anymore. Dad passed away Nov 22, 1999, approx. 1.5 yrs after Mom. I like to think of them up in Heaven together. Thank you for listening and allowing me share my story with you. I would also like to include a poem I wrote for my Mom the very night she passed away and read as a eulogy.
MY MOM - ALWAYS THERE
Mom, you were always there for everyone
No matter what the need.
You gave of yourself so willingly;
You loved to do good deeds.
For fifty years,
You were a loving wife. The very best mother,
In a somewhat tough life.
You bore five children, and saw it all through.
You lived to raise all of us
As you prayed you would do.
Fourteen grandchildren gave you such pride;
You adored every one
And thrilled at each stride.
You taught us all what's important in life,
You had such a loving heart.
I'll always remember your beautiful smile,
No matter how long we're apart.
How dearly we love you, How heavy our hearts.
Mom, we miss you so badly;
It's so hard to part.
I rejoice in the knowing that you hurt no more.
God has answered my prayers
To end your suffering, evermore.
The time has come to say goodbye;
I can't believe it's here.
But Mom, I hold you in my heart,
And I'll keep the memories near.
So until we meet in God's kingdom above,
I'll find comfort somehow,
Remembering your sweet mother's love.
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