Where Did The Time Go?

By Lisa Baker

Has anyone really looked at the calendar today?  Where did January go?  Here we are one month into 2019.  Time goes by so fast.  I talked to Dad this morning on the phone; it was hard to understand all that he said.  From what I could piece together, he is tired of sitting around and no one coming to visit him.  I tried to explain to him that both my husband and I have been sick.  He told me he has never had a cold, and that shouldn’t stop us from coming to see him.  He wants to see Mom and go to his house.  He thinks he can stay by himself.  He wants to walk in the yard and in the road so he can go wherever he wants.

He thinks that no one watches him at the facility.  It doesn’t matter how many times you try to tell him that staff watches him, he can no longer comprehend that he cannot be alone and that he is being watched.  He cannot communicate because he can’t verbalize what he wants to say.  He repeats words over and over thinking that he is completing his thoughts.  Dad will never again be able to be alone.

Right now, Mom seems to be doing OK.  She has been a little dizzy and has had some pain lately, but she seems to be settling in at her new facility.

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I want you to sit down and think about this: you can’t speak clearly, and you can’t remember which words to use to express your thoughts.  You feel so isolated and alone because you are having huge communication issues.  Can you begin to understand how a dementia patient feels? How about the family that is trying so hard to keep their loved one at home? At this point, it doesn’t matter if they are in a facility or at home.  If they are at home, you or someone must be with them 24 hours a day, 7 days a week. If you have no help, you start to feel like you are losing your mind too.

Now imagine you are married.  Your spouse works outside the home.  You have to care for your children, keep up with your house work, prepare meals, wash clothes, and help your kids with homework. Now add a loved one with dementia to the mix.  Imagine they are at a point where they don’t want to bathe or eat. If you thought you had your hands full before, you were dreaming.  You are very quickly wearing yourself out.  You need help. Is it any wonder that caregivers for a loved one with dementia stand a very high chance of getting it themselves?

So what are you going to do?

Give up yourself completely? Find extra help who you will have to pay? Start looking at long term care facilities? The answers to all these questions and many more vary from person to person and family to family.

I do not have all the answers, right or wrong.  I can only do what’s best at the moment for myself and my parents.  What can I tell you then?  Well for me, I almost immediately made an appointment with my doctor.  I had no idea just how bad things could be, but I knew I would need help for me.  I knew I needed to be very honest with my doctor about my physical health as well as my mental health.

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I knew that the stress of everything could be very high, but I also knew that I needed help.  I needed someone who I could share all the burdens and business of having both parents with a dementia diagnosis.  While I do have both of my brothers, I knew I needed someone else with some medical experience to help me with things.  My sister-in-law was a perfect choice.  She has medical experience which makes it so much easier when we have to split up with one of us with Mom and one of us with Dad.  We set up a group text between my sister-in-law, both my brothers, and myself, so we could communicate effectively to each other about both parents. Early on, I mentioned that my parents had their wills already done and their POA financial and medical already picked.  All their legal paperwork was in order.

Even with that, you need a human support system. I don’t see how anyone can do this without help.

What other things can you do? Look at the questions below.  Sit down with your loved one NOW and go through these.  Write their answers down or better yet, video record them and their answers.  You may think it’s not important now, but later you will wish you had done this.  Sometimes you don’t realize just how much is gone until you start thinking about the things you can never go back and ask your loved one because they are too far in the dementia process to be able to remember.

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This disease takes so much away from us all even before your loved one dies.

fb_img_1541818060307Sorry folks, I’ve been pretty deep in thought about the process and how we’ve already lost so much of Mom and Dad even before they pass.  You start realizing you can’t just ask them the things you used to because they don’t remember.

Strive each and every day to make as many memories as you can.  Take lots of pictures.  Journal about your loved ones as well as yourself.  You never know if the day will come, so you will be so thankful that you did.

 

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