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?
Specializes in LTC, SCI/TBI Rehab,RX Research, Psych.
((( Hugs )))
I also work with dementia...on a locked unit. We care for various types of dementias--Alzheimer's, vascular, Lewy body, Parkinson's-related....all of it.
After +8 hours a day of communicating in 'word-salad' conversations in order to redirect behaviors, provide a nurturing environment to all 26 residents (who's thoughts are literally 'all over the map' throughout the day)---it's understandable that we, as the caregivers, would need some time each day to decompress before returning to our OWN baselines.
Yesterday, there was a huge parade going on directly outside where I work...the music & yelling could be heard quite well from inside.
For 2 hours, I did my level best to tell 1 resident why we weren't able to attend the parade...none of which worked...nor did the prn I gave.
I recently spoke with my own MD about concerns similar to your own. He reassured me, by telling me that 'forgetting where you place your keys is completely different than forgetting what the keys are for'.
He encouraged me to learn a foreign language (as this is an infinite process...there are always words/phrases you can learn)--since this engages the brain in ways dementia victims are no longer able to do...this region of the brain typically being affected first.
I've since taken up Spanish...and make certain that I take time to take care of me---moreso than I'd been doing previously.
Specializes in med/surg, telemetry, IV therapy, mgmt.
My neurologist has just written a book about Alzheimer's disease. He's very passionate about this subject. He believes that in many instances it can be prevented from happening although not in all cases. But prevention must start early and it should be something you incorporate into your regular lifestyle. I'm not hawking his book by any means but here is the title: The Anti-Alzheimer's Prescription: The Science-Proven Plan to Start at Any Age by Vincent Fortanasce, M.D. He spent a great many years researching this. The book is a 4-step plan to prevent Alzheimer's, not cure it:
the Anti-Alzheimer's Diet
daily physical exercises for the body and mind
daily "neurobics" to build a big brain reserve
the importance of stress reduction and quality sleep
I think the thing that was most shocking to me was that he had told me before the book was even published that two "sentinel" risk factors found in many people who develop Alzheimer's are: a lifelong habit of unrelieved stress and not getting enough sleep. I thought back to all the nursing homes I have worked in and the various Alzheimer's patients who I couldn't forget. Many had been highly productive members of society: doctors, professors, scientists. What happened? They slept short hours and allowed themselves to be under constant stress. A good bop on the head in the past (prior head injury) doesn't help either.
He's also very passionate about the way Alzheimer's patients and dementia patients in general are treated by others. Forget about what you were told about re-orienting people. Dr. Fortanasce explained the pathophysiology behind why that never works with dementia patients. I wish you could all have the chance to pick this wonderful doctor's brain.
Dr Fortanasce also relates his own personal experiences with Alzheimer's and his own father. It's quite touching.
Forget about what you were told about re-orienting people. Dr. Fortanasce explained the pathophysiology behind why that never works with dementia patients.
Boy, that's the truth. I gave up on that a long time ago.
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.
My neurologist has just written a book about Alzheimer's disease. He's very passionate about this subject. He believes that in many instances it can be prevented from happening although not in all cases. But prevention must start early and it should be something you incorporate into your regular lifestyle. I'm not hawking his book by any means but here is the title: The Anti-Alzheimer's Prescription: The Science-Proven Plan to Start at Any Age by Vincent Fortanasce, M.D. He spent a great many years researching this. The book is a 4-step plan to prevent Alzheimer's, not cure it:
the Anti-Alzheimer's Diet
daily physical exercises for the body and mind
daily "neurobics" to build a big brain reserve
the importance of stress reduction and quality sleep
I think the thing that was most shocking to me was that he had told me before the book was even published that two "sentinel" risk factors found in many people who develop Alzheimer's are: a lifelong habit of unrelieved stress and not getting enough sleep. I thought back to all the nursing homes I have worked in and the various Alzheimer's patients who I couldn't forget. Many had been highly productive members of society: doctors, professors, scientists. What happened? They slept short hours and allowed themselves to be under constant stress. A good bop on the head in the past (prior head injury) doesn't help either.
He's also very passionate about the way Alzheimer's patients and dementia patients in general are treated by others. Forget about what you were told about re-orienting people. Dr. Fortanasce explained the pathophysiology behind why that never works with dementia patients. I wish you could all have the chance to pick this wonderful doctor's brain.
Dr Fortanasce also relates his own personal experiences with Alzheimer's and his own father. It's quite touching.
well, good! finally we have a professional on our side....about the orientation thing.....we can quote him when the under informed want us to keep telling poor emily that her husband is dead, over and over and over.....
My grandfather had aphasia which the doctors thought was due to Pick's disease a more obscure type of dementia. The aphasia part seemed to happen much earlier than the actual dementia. He seemed to have a pretty keen awareness of what was going on. (Once, he even showed my mother a brochure about moving to Flordia for retirement although he wasn't able to actually discuss it) He couldn't communicate at all even though he knew what he wanted to say and I can only imagine how frustrating and depressing it was. However, it gave me an appreciation for how amazing the brain is because some how when he got really flustered he was able to get out a few choice phrases like "you dummy" or "get out" ! My sister and I moved in a looked after him until he died. It was really sad watching him live through it:crying2: Any sort of dementia whether Alzheimer's or Huntington's is a horrible affliction which causes suffering for pt and family.
I got an interesting article from epocrates doc alerts (of course I don't have a link) on a study involving bright light and melatonin therapy in pt's with Alzheimer's which had results comparable to drug therapy with something like Aricept in slowing the progression of dementia. I will try to find a link to post and thanks for letting me share.
Where I practice, we never try to reorient- its all about directing and leading the patient from where they are and not increasing their stress by telling them that they are confused.
Reality is not so great so I enjoy entering the world of a person with dementia. Re-dierecting is a great technique. Another way of dealing with the issue of the parade is reminiscence. Talk about some of the great parades a person has seen or been part of.
Is there any reason why the special care neighborhood could not have a parade of there own? Many people need to celebrate life daily. Encourage your folks to walk and exercise. We know exercise is great for people with dementia. Having a parade to celebrate events is an easy way to get some people involved. They might be more comfortable in their own area but you might also look for volunteers who can take one person out to see a parade for a few minutes.
Working in the dementia field is exciting these days.www.alz.org is such a great source of current info. Visit frequently as this is a quickly changing field.
How wonderful that we have such enthusiastic people working in the field.
It's so true that we worry most about what we see all the time. Being a dialysis nurse I obsess over diabetes and hypertension. Just today I spent hours in the grocery store reading the nutrition information because I'm worried about getting too many carbs. Partly this is because my partner was diagnosed with diabetes 2 years ago and is having a really hard time getting her blood sugar under control. Now having seen what happens if your blood sugar stays out of control for a few years......well, I'm more than motivated to get this problem solved.
As for Alzheimers, I'm enjoying reading all your stories. My grandmother started having memory loss the last couple of years of her life, but wasn't officially diagnosed as having Alzheimers. When she was finally admitted to a LTC facility she was thrilled. She thought she was living in a hotel. She worked hard all her life, and she was amazed that someone else did the cooking, cleaning and laundry and she could do whatever she wanted. She died happy, and I couldn't ask for anything more.
It's so true that we worry most about what we see all the time. Being a dialysis nurse I obsess over diabetes and hypertension. Just today I spent hours in the grocery store reading the nutrition information because I'm worried about getting too many carbs. Partly this is because my partner was diagnosed with diabetes 2 years ago and is having a really hard time getting her blood sugar under control. Now having seen what happens if your blood sugar stays out of control for a few years......well, I'm more than motivated to get this problem solved.
As for Alzheimers, I'm enjoying reading all your stories. My grandmother started having memory loss the last couple of years of her life, but wasn't officially diagnosed as having Alzheimers. When she was finally admitted to a LTC facility she was thrilled. She thought she was living in a hotel. She worked hard all her life, and she was amazed that someone else did the cooking, cleaning and laundry and she could do whatever she wanted. She died happy, and I couldn't ask for anything more.
It's always good to hear a story with a happy ending :wink2:
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.
This is so interesting to me...I always swore that my Mom became way more funny and had a far better sense of humor as her dementia deepened than she ever did when I was a kid. It's interesting to see that maybe changes like that really do happen.
My heart is breaking for everyone here who is going through this...I totally understand how horrible it is. Hugs to all of you!!!! :icon_hug:
! My sister and I moved in a looked after him until he died. It was really sad watching him live through it:crying2: Any sort of dementia whether Alzheimer's or Huntington's is a horrible affliction which causes suffering for pt and family. 
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yadda_yadda_yadda, LPN, LVN
108 Posts
((( Hugs )))
I also work with dementia...on a locked unit. We care for various types of dementias--Alzheimer's, vascular, Lewy body, Parkinson's-related....all of it.
After +8 hours a day of communicating in 'word-salad' conversations in order to redirect behaviors, provide a nurturing environment to all 26 residents (who's thoughts are literally 'all over the map' throughout the day)---it's understandable that we, as the caregivers, would need some time each day to decompress before returning to our OWN baselines.
Yesterday, there was a huge parade going on directly outside where I work...the music & yelling could be heard quite well from inside.
For 2 hours, I did my level best to tell 1 resident why we weren't able to attend the parade...none of which worked...nor did the prn I gave.
I recently spoke with my own MD about concerns similar to your own. He reassured me, by telling me that 'forgetting where you place your keys is completely different than forgetting what the keys are for'.
He encouraged me to learn a foreign language (as this is an infinite process...there are always words/phrases you can learn)--since this engages the brain in ways dementia victims are no longer able to do...this region of the brain typically being affected first.
I've since taken up Spanish...and make certain that I take time to take care of me---moreso than I'd been doing previously.
(((((( Hugs )))))))