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I have been very brave until now.
Michael Ellenbogen
Posted: Saturday, November 16, 2019 6:54 AM
Joined: 11/30/2011
Posts: 2668


But the fear is starting to set in as I start to lose the meaning of words and the fear of getting locked up because of not being understood on what I may say or say the wrong thing without knowing the meaning of what I say.  As you all know it once happened already with the government and I was able to speak up for myself. That is getting harder to do and people like AA thru me under the bus so why would not every one else. An i was popular then and had friends at the highest levels.  It is starting to get a bit scary.


i2i
Posted: Saturday, November 16, 2019 9:33 AM
Joined: 8/12/2017
Posts: 225


Yes, Michael you have been and still are.  My heart goes out to you, for the worry of noticing these changes.  No throwing under the bus.  Here for you.
TessC
Posted: Saturday, November 16, 2019 11:28 AM
Joined: 4/1/2014
Posts: 4973


I can imagine it is very scary. That is why I became the right hand "man" for my mother. I protected her from herself, other people and falls, etc. I can give you many examples where I watched out for her to be sure she did not do anything that could get her in trouble, like shop lifting, taking her clothes off in public. I also told people off who made snide remarks, or looked at her cross-I was a warrior for my mother. Your wife will have to take on that role if and when you become unable to be your own.  Good luck and I hope you never lose the ability to advocate for yourself even if you lose your words.
Suziesb
Posted: Saturday, November 16, 2019 8:35 PM
Joined: 5/22/2018
Posts: 242


I hold the  highest respect for you, Michael. It has to be scary. My mom, a very stoic person all her life, has really opened up to me these past months, as she is still very verbal, and able to talk to me about her feelings more than she ever has. I hope you are able to open up to your loved ones as well and not keep it inside. We are here for you.
Michael Ellenbogen
Posted: Sunday, November 17, 2019 7:03 AM
Joined: 11/30/2011
Posts: 2668


Thank you all for your support but I am a very realistic person. I have been doing this for about 10 years, kind of  lost track when. I have seen so many things and I thought I herd it all. It was not till recently that it never crossed my mind on how one with dementia can be so misunderstood.  

 

When you think about it it happens right here in this forum. They are taken away to a AL or locked unit or for 72 our observation. You name it and it happens.

 

People mean good until it happens. I see so many folks left out as no one caring for them. Its all good until you caregiver turns on you or something happens to that person. They can help you or break you if they want because they are the one to still think and be able to express themselves and convince others about you. It happens all the time.

 

This is a cruel disease and we need to find a better way to deal with these folks. Just look I lost my friends early on when I could speak so why would you be surprised what would happen now. It sucks but it is also reality for now. We need to change that for those folks as we would never do that to someone with cancer. 


TessC
Posted: Sunday, November 17, 2019 9:43 AM
Joined: 4/1/2014
Posts: 4973


I don't think there are many people who gleefully place their LOs in AL or force them into behavior wards, but some folks feel they have to because they cannot take care of their LOs at home and the LO cannot remain alone anymore, even with help. Most people here have tried to keep their LOs in their own homes with caregivers coming in, but the cost of 24 hour care is too much, so they go the AL route if they cannot bring them into their own homes.

Many people with dementia suffer from disease induced paranoia and frightening behaviors, so it is not just the family being affected. It is often a kindness for their families to seek professional help from behavioral hospitals. I don't think it is the first recourse people take when their LOs begin to stop eating because they believe they are being poisoned by their food, or they won't sleep because they believe their neighbors come into their home at night to kill them. I agree, there are likely some people who are being sent to AL or hospitals too early, or for small misunderstanding, but most times there is an abundance of evidence that points to the need to place someone in AL or a hospital.

 I would never tell you to not worry about that possibility in your situation because I don't know you or your family, but I know you have written directions for them and I'm sure they will follow your wishes.

If you are worrying about other people who are being placed in AL and hospitals over verbal misunderstandings, then I understand, I do too, but I realize they have families who are taking care of them and those families are trying to do what is best for their LOs and I don't want to judge them with my standards.

Sadly, dementia is a disease of the brain, which controls so much and which can cause a person to do things that can hurt themselves and others, so unlike cancer, where the brain is often the last to be affected, if ever, families sometimes have to make the heart-wrenching decision to place a LO in AL or a hospital. It's not fair to fault them for their decisions because we will never know the whole story.

 What I would like to see happening is better care of LOs in these ALs and hospitals!! Once someone is in them, they should be are treated with respect, good care and compassion and never forgotten, neglected or abused.



jfkoc
Posted: Sunday, November 17, 2019 9:54 AM
Joined: 12/4/2011
Posts: 17548


Good care for a person with cognitive impairment is difficult to find. 


How many Drs are following a current protocol?


How many Drs provide resources for care after diagnosis local and online?


How many Drs prescribe drugs that are dangerous or contra-indicated for a person with dementia?


How many Drs know which drugs are for which kind of dementia?


How much training has the staff in a locked geriatric ward had specifically caring for a person with dementia? Are they trained in the correct use of drugs?


How many doors in each of our communities are open for a person with dementia?


How many day centers have any dementia training?


How many MC facilities actually have the extent of training we would expect for our loved ones?


How many “care partners” understand that education is necessary to do a good job?


How many realize this but do not know where to get training?


How many realize that there are tools to employ that have been proven that can be just as effective as drugs?  


How many care partners can reasonable only provide basic room/board and safety but would utilize extra help if available?


I have yet to run across anyone who post here who from the very depths of their heart and soul is giving their best. 


We have been on the front lines with little or no support,,,medical or practical.


That said, I can tell you that we have more help now than we did 10 years ago. We have come a long way but with no cure on the horizon we must vastly increase the availability of good care. 


Ask for and demand thoroughly trained staff. Ask about drugs, know if they are appropriate and check them for side effects and interactions ….do not expect your medical team to do this.


 Help educate your community. Hand out some brochures at your next club meeting. Ask someone from the association speak at your church or next club meeting. Shine a light.



Elena95
Posted: Monday, November 18, 2019 4:59 PM
Joined: 8/24/2016
Posts: 142


It is hard to be mis-understood. I remember a couple of years ago my mom was trying to tell me something at Christmas dinner, could see my confused face and said " You don't know what I'm trying to say do you?" And I didn't. It was hard for both of us. And there have been many misunderstandings since. But I have learned to read her face, her posture, even sometimes the intent of her mixed up words. Love has carried us through. I hope you have those who love you in your life, for this may bridge the gaps to come. It is horrible disease and so, so hard to go through.
 
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