Alzheimers is the worst

[hippylady7211]

Was reading some of the threads about alzheimers and wanted to share with you some of my thoughts. Both as a nurse and as a family member of someone who died of alzheimers.

I think that Alzheimers is the worst disease for a family member. You lose your loved one twice. Once when they are no longer "who they were" and when the body dies.

I remember going into my grandmothers room and there was no recognition of who I was on her face. She no longer remembered that she was my role model, my friend and confidant, and how much she meant to me. I started crying as I went to hug her, and she patted my back saying "it will be alright lady." We lost her body several years later. But that first time of realizing that they don't know you anymore is such a disasterous feeling.

As a nurse, it is so important for us to educate our families that your loved one might go into other res. rooms, may ask questions over and over, may misplace their sweater that you gave them for christmas, I even had a darling put her false teeth in the collection plate at church as she was taught to give to the Lord. (He understands).

My grandmothers dining manners became awful and my mother was just horrified. But if she was eating and not bothering others, a warm washcloth and a change of clothing was all she needed. This is just part of the disease process and what they do or say has no barring on who they were or their family.

And what must these little people going though. Maybe knowing that they aren't thinking right but don't understand what is going on? Strange people bossing them around. How when they look into a mirror they see their mother looking back at them and can't understand why "momma won't talk with me." Why doesn't someone hug me anymore. Did I like to eat fish?

The alzheimers unit that I worked on had 3 retired nurses. Is this a omen? One of them was 53 years old. I am now 51, sometimes forget what I am talking about, sometimes can't remember the newest password for the computer at work. Oh, my am I the next family member who gets the alzheimers? Or is it that I am just tired after a long day?

Any other nurses out there with families with alzheimers? What do you think?

[SaraO'Hara]

*hugs* If it's any consolation, I'll be twenty tomorrow, and it takes me a little while to always remember little changes at work. Thankfully, I've never had a family member with dementia, but so many residents... There have been so many, that over the course of a year or two, go from being extremely forgetful but capable of self-care, to sitting, staring at the wall, unable to even feed themselves. There is one lady, whom I had on my "run" for over a year - before I went part-time for nursing school. I'd come in to do my one day a week, and the degenerative changes in between times were striking. She used to tell me all about her family, ask me all about what was going on at home.. now the only thing that sparks recognition is my red hair. I'll come into her room... "Oh, your hair! Where is that girl, she had such beautiful hair...".

[TopazLover, BSN, RN]

:typingI usually agree about Alz. Some days I think other chronic diseases are right up there as they, too, effect the family so badly. Liver and Kidney disease come to mind quickly.

You know the stats about Alz and the genetic component. You might have a slightly higher risk if it was early onset, otherwise more than likely age has more to do with it than most things we know. Last I heard, 1-2 months ago the best educated guess was inflammation as cells breakdown.

I have also seen an unusual amount of nurses in special care areas. I have my own theories, but no answers. I worry about the same things as you. My husband does not help when he informs me he will have me "chipped" like a dog so I don't get lost. I might forget to buy bread sometimes, but I have not gotten lost in the grocery store yet! I guess we worry most about what we see frequently. I took my ICU ed. with a nurse who insisted on going to the bathroom before she left work so she would not burst her bladder if she had a MVA. Other nurses refuse to hit the bathroom because seems like something always brings you back to do "one more thing". Just depends what has happened to you.

I know what it is like to lose someone twice. I am glad you have great memories of a friend as well as a grandparent.:redpinkhe

Thank you for sharing your story.

happy birthday, Sara:shbdy:

[CapeCodMermaid, RN]

I asked a neurologist once about Alzheimers. He had an interesting theory:

If you're the kind of person who sits in front of the TV all day and watches Jerry Springer and inane game shows, you probably don't have too many brain cells functioning so if you lose some to dementia, you'll be up the creek. But, if you are active, read, use your mind and have lots and lots of brain cells, the loss of some won't be as bad. The theory doesn't hold up in reality...we have a rocket scientist with dementia.

When I told him I was petrified of becoming demented...I lost my keys twice in a week...he laughed and said "You don't have to worry if you lose your keys. We all do that...If you find your keys and can't remember what they're for....then you should worry."

[Jo Dirt]

We have a former DON on our unit with Alzheimer's.

As lost as last year's Easter eggs...

My nursing instructor told us that it may be hard for us to see our family slowly lose their mind, at first it might be hard for the victim of this disease who realizes they are losing their mind, but for the sufferer this can end up being a blessing. I understood what she meant by this when I met Rose. Rose sits in her geri recliner holding and talking to a baby doll all day long. She believes that baby is one of her 8 children and everytime you see Rose she is happy and smiling.

Betty is another one who has her baby doll. She even tries to breast feed it (yikes!)

Homer wanders the halls, puts his shoes on the wrong feet, wears his underwear on the outside of his pants and tries to flush his socks down the toilet, but he always greets me (and the others staff) with a smile and we can talk about the same thing over and over and he never tires of it.

I imagine what it would be like if my mother had Alzheimer's. She has always been very sharp and quick-witted. She is in her late 60's now and I have noticed she has started to slow down. We talk every week and she a lot of times forgets she has already told me about something and it bothers me because she never did this when she was younger.

Getting old sucks.

[oramar]

Was reading some of the threads about alzheimers and wanted to share with you some of my thoughts. Both as a nurse and as a family member of someone who died of alzheimers.

I think that Alzheimers is the worst disease for a family member. You lose your loved one twice. Once when they are no longer "who they were" and when the body dies.

I remember going into my grandmothers room and there was no recognition of who I was on her face. She no longer remembered that she was my role model, my friend and confidant, and how much she meant to me. I started crying as I went to hug her, and she patted my back saying "it will be alright lady." We lost her body several years later. But that first time of realizing that they don't know you anymore is such a disasterous feeling.

As a nurse, it is so important for us to educate our families that your loved one might go into other res. rooms, may ask questions over and over, may misplace their sweater that you gave them for christmas, I even had a darling put her false teeth in the collection plate at church as she was taught to give to the Lord. (He understands).

My grandmothers dining manners became awful and my mother was just horrified. But if she was eating and not bothering others, a warm washcloth and a change of clothing was all she needed. This is just part of the disease process and what they do or say has no barring on who they were or their family.

And what must these little people going though. Maybe knowing that they aren't thinking right but don't understand what is going on? Strange people bossing them around. How when they look into a mirror they see their mother looking back at them and can't understand why "momma won't talk with me." Why doesn't someone hug me anymore. Did I like to eat fish?

The alzheimers unit that I worked on had 3 retired nurses. Is this a omen? One of them was 53 years old. I am now 51, sometimes forget what I am talking about, sometimes can't remember the newest password for the computer at work. Oh, my am I the next family member who gets the alzheimers? Or is it that I am just tired after a long day?

Any other nurses out there with families with alzheimers? What do you think?

I have a mother whose mental facilities are declining. The whole time I am coping with her fading facilties I am worrying about my own. I think you have a lot of company.

[sk8ergirl]

My mother has not officially been diagnosed yet but she has severe short term memory loss and has lost most of her ability to make good judgment calls. We expect an official diagnosis soon. For someone I haven't been overly close with my whole life, it is already hitting me hard.

My mom also has two sisters who have ALS. One has already passed as a result and the other is nearing the end. It is beyond awful to see the body deteriorate while the mind remains intact. All of them are 40s-50s.

Both of those diseases are right at the top of the "worst" list for me.

[UM Review RN, ASN, RN]

I just watched this PBS special, The Forgetting: A Portrait of Alzheimer's, and I'm going to put the link here for you all because you can now watch the program online.

http://www.pbs.org/theforgetting/

[Lady_Vol]

In 1998, my mother was diagnosed with Alzheimer’s. Following the diagnosis, my mother lived with me and I cared for her needs. Eventually, the disease progressed until she was finally admitted to a long term care facility.

Over the past ten years, I have watched as she has slowly faded away. The woman, who could make you laugh until you cried, can no longer even smile. The woman who taught Sunday School and was a Girl Scout leader can no longer read or even recognize the faces of her children. She can no longer feed herself, bathe herself, talk or even walk. Alzheimer’s is an incredibly cruel disease.

My mom and I were so close. We were more like sisters than mother and daughter. We giggled. We would lay on the bed in my room and listen to records. She knew me better than I knew myself. To lose that closeness is incredibly painful. The day that your mother no longer recognizes you is one of the most devastating days of your life.

[linzz]

My grandmother had alzheimers from about age 65 and it followed the usual pattern. It was very hard on my mother, even though my grandma went to a nursing home, we still saw her each day and had an aide come in to bathe her twice a week as the home at the time could only do one bath a week.

Now my stepfather is in early alzheimer's and doing many silly things and my mom is in total denial of this, so I guess we will wait until things get very bad. This is not my choice but she just is not ready to deal with it and of course it is endlessly frustrating.

[achot chavi]

Good news!!! there are tremendous advances in medical treatment- I even hear of an immunization that had been scrapped and is now back in research. This might mean better treatment in the next 15-20 years- enough to finish our careers and still be treated. I think HUNTINGTONS is worse- no treatment yet and so hereditary!! the families of my patients with Huntington's rarely visit- as it is so depressing!!!

:twocents:I recommend to all families of Alzheimer's to join a support group!!

I also recommend getting into routine habits like always leaving your keys in the same place, try parking in the same general area so that when you do become forgetful you're more likely to retain this.

Of course its important to exercise your mind- things like sudoko, word games, learning and reading professional articles will help- but they say that moderate physical exercise at least 3 times a week is associated with maintaining memory

I have also seen how dogs have been trained to help an Alzheimer's sufferer in his early stages- amazing - just like see- eye dogs.

BEST STORY to date is the man who describes his mother as having been a cold, critical parent:( who lectured and traveled all over the world, neglecting her maternal responsibilities. when she was diagnosed with alzheimers and forgot her old self- she became a real warm and physical mother who hugged and kissed her kids and grandkids as often as she could:heartbeat- a real 180!! The son claims he is now getting all the love he missed out of as a kid. I give him credit for finding the lemonade in the lemon.

:yeah:What a great thread!!! I was asked to speak to my daughters class about alzheimers - I will print out some of your stories to share. Keep up the good work:bow:

[CoffeeRTC, BSN, RN]

Gramma has vascular dementia. She is 97. "loosing her mind" was her biggest fear. Her mother was committed to an institution when she was in her 60s..keep in mind that was many, many years ago, but the stories I hear about her and that place. She just started fading about 3-4 yrs ago.

I have seen alot of nurses and school teachers in our LTC, hmmm.

What I have seen is that the progression of alz has slown down. When I first started in LTC in the early 90s it only took about a year from admit to see the pts that are contracted, in the fetal position and total care. Now days little to no contractures and longer life expetancies and less total dependance residents.

Is it the meds? restorative programs? better systems?