Please add all of you can think off to this list - Thanks

Michael Ellenbogen

 I decide to a podcast for caregivers next year with a motivational speaker I have now known for over 10 years. I believe many of you can be helped if you would just learn a few things. He is not as familiar as I am with this disease. So, I am asking you all to add all of the issues you have to deal with your loved ones. Nothing is off the table. And if you can add the frequency of how often you must deal with it. For example, if they are always yelling is it almost very minute or a few times a week for 10 minutes. Thanks and please feel free to vent all you want here because that will help me figure out the best approach. And then again, I may find out I am wrong on these issues.

jfkoc

Michael, I think it would be more interesting to discuss the issues you have as a person with dementia that you want a caregiver to  understand.

Michael Ellenbogen

I have done many of them like that. They are all over the internet. This is a new idea.

jfkoc

What is the best way to google them?

CStrope

as a caregiver of someone in the mid-stages, here are the things I find hardest:

1.  loss of myself, since I have to adapt everything I say/do so that DH doesn't get upset.  Nothing I want or need matters anymore

2.  loss of meaningful adult conversation

3.  fear of the late stages and what they will bring

4.  fear of financial implications of what the disease will bring

5.  loss of socialization because DH doesn't want to go or do anything

jfkoc

Finding help...real help

1. Medical

2. Legal

3. how to evaluate placement.....need and facilities

4. how to validate

Michael Ellenbogen

Jfkoc - I don’t even know where they are anymore. I have given over 350 interviews, been written in journals and newspapers. Even on TV and Fox News. You could try searching on my name Michael Ellenbogen + the word of dementia or Alzheimers.   I know lori labey has some of them somewhere. I know two are coming out in the next few weeks by Teepa and we still have radio show scheduled next January along with a few other station. So I am always out there and it depends on what they aske me. I never plan my interviews and always live or prerecorded live. No changes made. Sadly my website use to have some of them and my facebook but I shut them down along with twitter.  

 

jfkoc

Googled......thanks. Why did you shut down your web site?

Please have your wife write down how we can view the Teepa Snow interviews.

Michael Ellenbogen

My wife has no idea on what I do or who I speak with. I shut my sites down for two reasons. I never liked social media but I had to do it for my advocacy. But when those organizations crossed the line and lied about others, I had to stop using them and no longer support them even if it hurts me. I have strong values and I stand by them no matter what.

LadyTexan

Michael - as always I am grateful for your advocacy.

There are so many issues caregivers face. This disease is unpredictable and it seems the path is always changing. It is so important for caregivers to:

1. Be problem solvers. 
2. Be prepared for challenges but don't go looking for trouble.
3. Be flexible.
4. Find resources.
5. Be forgiving. 
1. Forgiving of oneself and 
2. Forgiving of the loved one's unintentional behaviors.

Specific behaviors that are challenging:

• Difficulty getting the LO's cooperation to be tested for diagnosis when symptoms are starting - frequency: intermittent in stage 4
• LO's Refusing to give up the car keys and fire arms when it is no longer safe for them to safely drive or use guns responsibly - frequency: daily in early stage 5
• LO's Incontinence - frequency: daily at late stage 6
• LO's Falls - frequency: several times a week at late stage 6
• Caregiver navigating healthcare system, employment policies, applications for assistance
• Caregiver losing patience - frequency: several times a day
• Caregiver guilt - frequency: several times a week
• Caregiver acceptance of a terminal illness and depressing situation
• Caregiver's need to eliminate expectations - the sooner in the illness this is done, probably the better
• How to not strangle non-demented, well intentioned people that say stupid things, for example, "he looks so good", "let me know if you need anything" and then they never show up, "remember! put on your oxygen mask first" - frequency ALL TOO OFTEN

Iris L.

jfkoc wrote:

Michael, I think it would be more interesting to discuss the issues you have as a person with dementia that you want a caregiver to  understand.

Michael doesn't have what other PWDs have.  Thus he can be on television and give interviews and write a book.  Michael is doing a lot more than I can do.

Iris

Michael Ellenbogen

This has nothing to do about what people with dementia deal with but Caregivers. My goal is to see if motivation can change the person. So that is why I plan to share these with the person so they can put it into words.

 

Those accomplishments are since I got started.  I reach out to people and they do all the work for me. I get total help from all of them to make it possible. They for example will complete all forms for me as I do nit do anything,. You would be amazed on how many great people are out there that will help you when you tell them you have dementia and let them know what you can not do. I am on the highest level committees possible in this world and they all treat me as important if not more. I cannot even believe what I am able to do but I struggle a lot to do it. My head always feel like it’s in a vice. You would be amazed on what you can do if you push your self. All of this work is helping me to continue my fight and keep my mind more sharp. 

LadyTexan

I have attended several care giver conferences in the past. I usually leave the conference feeling recharged and motivated to carry on my duties.

For me, the most Motivating messages are often related to validation. I don't always remember to use validation techniques, but when I do, there is generally more harmony for DH And Me.

Other motivating messages relevant to caregivers is just to recognize all that caregivers do and do well, instead of dwelling on something that didn't go so well.  Then feeling guilty or defeated or feeling like a failure.

For me and my current challenges, the mechanics of caregiving are straightforward. It is my mind that gets in the way or my ability to kindly interact with DH that derails the situation.

ladyzetta

Lady Texan,  I carried a lot of guilt thinking what I was doing was not enough. I did my best but when it came time for placement It was the hardest thing I had to do and still today I think I could have done better. So guilt is a big thing for caregivers, at least it was for me. 

Thank You Michael for all you do. Zetta 

Doityourselfer

Here's an issue... agitation.

In my experience in dealing with my EOAD husband's highly agitated state is to keep calm, be cheerful and patient because the episode will eventually pass.    A highly agitated PWD is one of the most difficult things to handle, especially in the earlier stages when he was very mobile and was agitated almost daily for hours at a time.  Medications to calm him have helped a lot.  It also helps to step away from the negative situation for a few minutes.

These are some things cause my husband's agitation - seeing people/things that I don't see, constipation, loud noises/voices and the unknown because he can't express what's going on.  Keeping a routine is key in caring for my husband.