Priorities in educating younger generations/general public re spousal caregiving?

storycrafter

I have the opportunity to be on a panel discussion for our local branch of the state university next week... unless I chicken out. The topic is about spousal caregiver experience with dementia/Alzheimer's. My understanding is, there will be perhaps a group of 3 or 4 of us caregivers responding to questions from a moderator. They are recording the 45-minute session for further study and research.

The event is obviously very limited timewise, but I'd like to participate and contribute to younger generations if I can manage it. My very introverted almost 70-year old brain and body has gotten even slower and I would feel easier if I could plan ahead about a couple things: 

1) What might some of the specific questions be?

2) What would be the highest priority items I want to convey in such a short time?

I'm going to give the contact person a call for more clarity re their program purpose. It would also be helpful to know who the audience is and their focus.

I'm not accustomed to such situations - presenting a public panel discussion with strangers - and imagine these are young people supervised by a staff person. The fact they haven't provided more information seems naive about the needs of a caregiver, a speaker in a recorded session, someone already under extra stress. It's also via Microsoft Teams online, which I'm not familiar with. I want to help the interviewer ask relevant questions and provide useful perspective.

I am struggling personally with depression and secondary isolation/ loss of confidence/self esteem, which doesn't help in quick access of thoughts and swift verbal self expression to sharp young people.

I need help organizing my thoughts so I can feel somewhat prepared, or at least have a plan of points to have at my fingertips.

My caregiving situation may be atypical of the other Alzheimer caregivers because my spouse has FTD, is highly functioning and physically independent (our issues are mostly behavioral - personality changes/executive function issues/impaired judgement/bi-polar/high anxiety. I also was caregiver for many years to my father who had Alzheimer's and died two years ago. Maybe that combined perspective caught their interest?

I'd love to hear any of your thoughts on what they might ask and what I most want to convey to them about caregiving. It would help me focus and give me confidence as I decide whether to actually participate. Thank you!

Jo C.

 There will be input from others:

I think that it is important to first let people know that the word ""dementia" is an umbrella term and that there are many different kinds of dementia of which Alzheimer's Disease is only one.  Most people have no idea of that and are unaware that Alz's is one type of dementia.  That is an important piece of information.

The person you care for has one of the different  types of dementia which is, a behavioral variant of, "FrontoTemporal Dementia."  FTD persons do not lose memory until far later in the disease, but the person loses the ability to utilize judgment and reasoning and the negative behaviors and even rigid false beliefs that are called "delusions" are very much present causing significant ongoing issues. 

It is okay to let them know you are not used to public speaking and that you will give any questions some thought when answering.  That will give a frame for your interaction.

Questions may come regarding your feelings:  You can let them know how it feels to have a beloved spouse suddenly get diagnosed with dementia which changes your entire future and what that means as the person slowly loses their ability to function and even process the day to day personal tasks as well as the ability to even know who they or their LOs are as the disease progresses.  Couple that with financial difficulty and stresses of not having assistance will get questions going.

Some will probably want to know what impact this has had on you personally - ongoing grief at the losses, stress, lack of sleep, exhaustion, emotional component, literally using up finances for your spouses care leaving nothing for your own future needs.

They may ask how you feel about placement; once again, financial difficulty comes into play as well as your own personal feelings re placement. Perhaps they may even ask if there is as a positive side to caregiving when dementia is present and you can let them know how you feel about that.

 They may ask about "Cures," there are none; and not all meds to slow down the progress of dementia works well for all and some medications to assist in one type of dementia may be contraindicted in another.

Diagnosis?  Let them know that it is imperative to have a dementia specialist as part of the healthcare team.  One needs to have an accurate diagnosis for type of dementia as meds for one type can be contraindicated in another and make thing even worse.  You will have your own feelings about this.

(My usual thought on having an accurate diagnosis is:  Not to have a diagnosis is like being dropped by parachute in the middle of the night into a foreign country; but no one has told you what country you are in.   You are supposed to get somewhere, but you do not speak the language, do not have a map, do not have coin of the realm, yet you are supposed to get to that unnamed "someplace," and the goal is to do "something," but no one has told you what that something is.)

Questions will be easy to address, you are not teaching; just sharing your personal experience and the questions will be addressed to all of you caregivers on the panel

I think this is a wonderful chance to share your experience and open some minds to what is beyond the textbooks . . . NOTHING goes on a straight line or is as simple as the textbooks make it out to be.

Can even drop a bit about the AlzConnected where great support is found amongst others who caregive and they can learn alot by reading the Posts on that site which is funded and managed by the Alzheimer's Association.

Much more to come I am sure; just what pops up to mind in an instant.

J.

Rescue mom

I used to have to speak and do panels as part of my job….you raised some good points already. I thought it was really important to know who the audience (or intended audience) is, what’s the point/purpose of the presentation? Caregiving is a very broad topic, for such a short time.there Is it for professionals in the field? Is it for students thinking about careers? Is it for teachers? “General public” is so broad, they surely have some intended audience in mind? Or maybe a segment for a cable show? 

But knowing the audience would be a big part, for me at least, in deciding what points I want to emphasize, given the time limits for 4-5 people to talk.

And, who are the other panelists? Not names, but do they have other, maybe different, experience or views to represent? And who moderates, may well not be a student.

As you said, all best answered by the organizer. 

But remember, your own experiences and opinions are exactly that. They’re yours. There is no right or wrong answer. What’s happened to you, what you have found or think others should know, is the thing. No right or wrong. This is your experience, your insight, your feelings. It doesn’t sound like they’re looking for “facts,” they want caregiver experiences. Of course you don’t want to cite a wrong fact, but that doesn’t seem to be the purpose of the panel.

In my experience—moderators generally come with questions. They may be good questions, or not so good, but the questions are up to them. They may ask you ahead of time if there’s something you want to emphasize, or be asked about, and if so, that’s good. But they may not.

Regardless, your answer can present what you think is important. If you think the moderator missed a point, you can still go ahead and mention that point.

And, panels usually go by very fast. It will be over quicker than you think! 45 minutes for even just 3 people and moderator…. It’s quick.

M1

Good for you storycrafter, I hope you decide to go ahead. You've clearly already given it a lot of thought. I agree with RM that 45 minutes will go by in a heartbeat, I would suggest coming up with no more than three points you want to make, maybe even one or two will suffice.

One of my mentors in the past gave very good, very simple advice for preparing a talk: tell them what you're going to say; say it; then tell them what you've said. Short, sweet, concise.

Good luck! Let us know how it goes.

storycrafter

Thank you! You've each been so helpful and supportive already. I went back to the original post I received from our local Alzheimer's Assoc. group and found an attached poster I didn't notice before. Says it's a focus group project about sharing thoughts, feelings, and experiences with other spousal caregivers. A support group facilitator, the Aging supervisor at the college?, will lead discussion. I've left a message to find out more.

Ed1937

Storycrafter, I don't have anything to add, but just wanted to thank you for participating in this. It is so important. 

Today I talked to one of our old neighbors from about 10 years ago. He heard about my wife's dementia, and asked me if she was getting any better. I just told him that she was not, and will not get better.  

And last week I found out that even 1 of our sons did not know that dementia was fatal, after his mother was diagnosed 4 years ago. The rest of our family knows about it, and I just couldn't imagine that he didn't know. The general public is really in the dark about it. Thank you again.

Joydean

Storycrafter, best of luck to you. What an opportunity for you. The only thing I would say to you is you are getting a chance to let others know the truth about being a caregiver. Your personal experience, and therefore you will also be a representative for many of us! Be yourself, share your true feelings! God bless you and let us know how it goes.

David J

Lots of good advice already given. Best is to be yourself and say what you feel. Be honest about how being a caregiver has changed your life and your relationship with your LOWD.  Don’t worry about what the questioner or audience might think or react. You are there to share your reality, so be the real you. Good luck, you’ll do great!

Iris L.

I, too, participated in an Alzheimer's Association event, and I am not used to public speaking.  There was myself and a PWD-spouse couple.  I had been sent the agenda of questions that I was supposed to answer.  I wrote out my responses.  I also wrote down what points I wanted to be sure to make.  The moderator kept me on task because I got distracted a couple of times.

As for content, I think it is very important that new caregivers understand that the dementias are unlike other illnesses, and that they will need a different approach from what they are thinking.  They definitely need to learn new skills, and not "wing it".  They need to read, watch YouTube videos, and join a support group and this online support group.  They also need to exercise their "patience muscles"!

I'm sure you will do a great job.  Why?  Because there is a great need and you have a desire to fill that need!  Best wishes, Storycrafter!

Iris

Fairyland

Hi, I only want to add, besides my admiration for you, that I have found doing this sort of presentation by video is somewhat easier in many ways. 

I had a lifelong avoidance of phone calls and appearing on video was beyond the pale! 

I was plunged into it overnight at the start of the pandemic by being both employed with meetings to attend but with everyone banned from the office, plus I had just been elected chair of a voluntary management board so just had to get on with it!

You need to keep it a bit shorter and to the point as people in the audience are doing things off camera and more distractions to cope with, is the main thing I think.

They will benefit enormously from your input. Edited to add, as the parent of 2 college age students, they are pretty forgiving in my experience.

Michael Ellenbogen

I am involved in many types of groups. It is important to go in there with an open mind. Speak from the heart and be completely honest with your thoughts and feelings. There are no wrong answers and its all about learning on how to make it better for others in the future. Good luck.

Jo C.

Okay; now that you know it is not a group of inexperienced students you are speaking to, but rather a group of adult caregivers whose LOs have dementia, this will be so very easy.   They want to have you and the other panel members share thoughts and feelings; you will do very well,  just be open and honest, even if there are negatives, that is all part of the caregiving experience..  I have sat on such panels and other presentations, the 45 minutes will go super fast.

You have much experience and are a compassionate person, I think you will add much to the presentation.

J.

Ed1937

storycrafter` wrote:

I have the opportunity to be on a panel discussion for our local branch of the state university next week... unless I chicken out.  

Storycrafter, I just wanted to share something with you that may or may not help. About ten years ago, I decided to try to raise funds for St. Jude Hospital for children. Almost all of my contact with other people was one on one. But I got in touch with a local woodworking group who had a meeting coming up. There were only about thirty people there, none of which I had ever met. I never spoke to a group of people, and I was terrified to do that. The first thing I did was to introduce myself, and explain why I was there. I told them right off the bat that I was uncomfortable talking to a group, but I knew the kids in the hospital were more uncomfortable than I was. It was a huge success, and altogether I was able to take in just short of four thousand five hundred dollars. Of course that was from getting donations from local businesses as well as the woodworkers. I hope this will give you some ideas. If you are not perfect, people will be forgiving, and when it's over you will feel good about your role.

abc123

Dear Storycrafter, thank you for participating on this panel. Very important, it should be happening all over the country. If I had to point out 3 things about this disease I think they would be

#1 There are many types of dementia.

#2 It is a terminal disease.

#3 Red flags to watch for. ~ a change in personality and routine. Becoming obsessed, confused, afraid, getting lost, misplacing things, having problems with everyday things like a TV remote, cell phone and garage opener. I would be sure to mention safeguarding finances. Get paperwork in order, DPOA, A will, A trust. LT care insurance.  

My parents were able to discuss the future and make plans. That was a huge blessing. Not everyone is that fortunate.

Please let us know how it goes. I bet you'll be fine! Good luck!