Dementia: A daughter's experience

I and my family have lived through what some of you may be going through.  I am writing this because dementia is not an embarassment.  It is not a stigma (or at least, it should not be)!  It is a part of life for some people - more often than we may know. 

I am writing this to let you know that you are not alone. 

Below are some things that may resonate with you regarding someone in your life who may be declining mentally.  It's not always Alzheimer's, although a lot of the early symptoms may be the same.  Sometimes it's just dementia that gets worse.  There is medication that can sometimes help slow it down; not cure it, not reverse it, simply slow it.  Sometimes.  For a time.  Here's what I experienced.  Hope it helps.

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It comes on so slowly, you don't even know it's happening - until you finally know!  In the meantime, there has been stress and frustration on all sides.  

The person who went to family gatherings says at the last minute, "I'm not feeling well.  I'm not going to go."  Then does the same thing for the next event and so on.

The person may not get all the facts correct as they are discussing something and the listener starts to correct them.  The person gets upset.  They get frustrated.  They may start arguing.  

The person repeats the same thing - often.  Sometimes they repeat the same thing within the course of the same conversation.  Why?

You may try to correct them.  Try to argue what is right vs what they said is wrong.  

You may take what they are saying as personal; a personal affront, a personal attack; think the person is intentionally trying to start an argument.

You may wonder why they forgot something - a special event, a call, an appointment - or even paying a bill.  Is it a one-time miss?  Did it happen before?  Will it happen again?  It seems they keep forgetting things or they keep making excuses.

Excuses!  Everything seems to be an excuse!  The person is making it seem that you are in the wrong and they are being combative about anything that is said.  What is going on?

It is possible that the person feels different.  They know something is changing in them and they are trying to "fake" being ok.  They don't know what is happening, but they know they are not themselves.  When someone corrects them, the person feels defensive.  They feel "less than".  They feel that they have to prove they are ok - because if they're not ok or if people don't treat them as if they are, then their fears will be validated.  The fear that they are losing their capacity.  They know it's happening, but if others know, then they will be treated differently, or "labeled", or not be independent anymore.  What kind of life will they have?  They are slowly feeling themselves change, but they have no control over it.  So when others make them feel less than, the person starts to "fight" to be understood; to be seen as competent; to be respected in that they have feelings, choices, decisions they can make - to be respected as an individual adult human being.

You and others may feel the need to correct the person if they say the wrong thing - get the facts wrong.  You don't need to correct them.  Acknowledge them.  Accept whatever they are saying and let them feel heard.  If they get facts wrong, who will be hurt or affected by that?  No one!  It's just letting the person talk and be respected.  JUST LISTEN.  Respond based on the person's reality at that time.  If they are in an alternate reality, be there with them; respond to what they're saying in their current state.  Another day, things may be different.  Go with the flow.

If the person may need assistance with bills, physical issues, driving, etc., let them be part of solutions.  Ask them their thoughts on how they've paid bills and offer to help, but do so in a way that makes them feel they still can be part of it.  Or offer in a way that lets them know they've worked hard all these years, they've done a great job, and now they deserve to let someone else do the things.

The person may also express FEAR, CONCERN, SADNESS!  They may ask, "What is happening to me?"  What I have found helps is when I have said, "You're going through changes that a lot of people go through.  It's ok.  You've done so much in your life and have been such a great support to everyone.  You've been a wonderful role model, so thank you for being a good example.  Now it's time for others to take care of you because you deserve it!"  That kind of commentary has made the person feel better and express, "Thank you for explaining it." Guess what?  I've had to repeat that statement more than once; and other statements more than once, and if it helps the person feel better in the moment, I'll repeat it again and again.

If it's obvious the person needs help or guidance on anything, offer assistance while listening to their wants and needs.  Decide what is worth pushing vs. easing into.

Ask the person if you (or someone else) can go with them to their doctor appointments so that there are "two sets of ears" because it can get confusing with all the medical information.  Ensure you, or whoever goes, takes notes.  After the dr. visit, ask the person what the dr. said.  Reiterate what was said by the dr.  Write down anything the person needs to remember and place the written information in a place they can read it often.  Keep a copy of the information for yourself.  

Having dementia is not easy - on the person who has it and on the people who engage with them; especially those who live with them!

If you are a spouse, live-in family or caregiver, make sure to take time for yourself.  Know that you are not alone.  

Contact your local Council on Aging, Area Agency on Aging (in southeastern MA, that is Coastline Elderly), the Alzheimer's Association and/or physician's office to ask for support groups and other resources.    

Your loved one needs you!  You can still build a relationship, it just might be in a different way.  Hang in there!

Can you relate to any of this?  Have you had other experiences?  You can reach me at coadirector@mattapoisett.net  

NOTE:   Due to the website's design, any comments will automatically identify the writer as "jcoucci".  If you would like to add your experiences, you must submit comments to coadirector@mattapoisett.net.