What Dementia Means to Me

I try to be Suzy Sunshine, and I try to hold fast to my faith. I try to stay upbeat, and live for the moment, while not looking into the future. Blah, Blah, Blah. But if I had to be honest about the last 2+ years, it has truly sucked the life out of me and added over 40 pounds to my waistline. As I lay in bed, clinging to my husband’s hand, the tears drip down my face when I think about all I’ve had to endure and what I have to look forward to. I don’t mean to discourage anyone, but these are the words that come to my mind tonight:

Humiliation. Loss of 2 jobs in 1 year.

Embarrassment. We live in a  small rural community.

Loneliness. We see very few people unless we go to them.

Financial Crisis. No income for 2 years, waiting for SSDI.

Fighting. Begging, pleading, calling, writing, testing, evaluating…

Relief. SSDI now keeps our monthly bills paid, since April.

No self-esteem. My husband had to prove absolute inadequacy to get help.

Lawyers. We hired 4 on 1/2 salary over the past 2 years.

Hunger. We had nothing and relied on others to feed us. In the end, we were finally approved for the local food bank.

Humiliating.

Doctors & Doctor bills: We see 3 doctors regularly to monitor degeneration.

Fear. How are we going to face the future? The more we learn, the more scared we become.

Sorrow. I don’t want to live without him. I’ve never been alone in my whole life.

Questions. How am I going to keep working and provide the support he needs? How am I going to afford the services he needs? How am I going to be able to keep up with the demands of the house and the property? When should he stop driving? I have hidden the guns, but is that enough? Is he safe when I leave him alone?

No plans. We can’t make any plans, because we don’t know how this thing is going to progress or the speed in which it will move.

No privacy. He is such a modest man. What happens when he can’t take care of his personal needs?

Quiet. He speaks less and less, and rarely starts a conversation.

No reading. He can’t hold on to the plot of a book. However, he still reads news articles.

iPad. Thank God for solitaire.

Sneaking. Mostly that has stopped.

Lying. That too.

Home. He stays home most of the time. It is where he feels safest. That, I do like.

Not much emotion. When I cry, he just looks at me. He used to be so sensitive. Not any more.

OCD. Still anal about his lawns and gardens.

Faithful. Still loves God and enjoys church although he can’t remember what the sermon was about. It’s more about the people.

Forgetful. Still loses his wallet, his belt, his glasses, his phone. Always has. Just worse.

Tired. He sleeps a lot.

Headache. Every day.

Lonely. Did I say lonely? Few call. Few visit. I must say that I am surprised by that. He doesn’t hear from past coworkers, friends, family, and even most church members including the Pastor.

Less patience. Never had much. Worse now.

Magnified. It seems to have taken all his most challenging characteristics and magnified them.

Content. He seems mostly content.

Stares. When asked what he is thinking about, he doesn’t know why you are asking.

Why? TBI, meds, alcohol, genetics… No clue.

Too young. I always knew I’d lose him early. He has never been a healthy man…but I never thought it would be this early.

Responsibility. I’m in charge of everything…except the lawns and gardens, and I don’t want to be.

Husband/Child: I shouldn’t have to care for my husband like a child.

Selfish. What about me?

Heartache.

Dread.

Unknown

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8 Comments

  1. My family will pray for you. What beauty depth and clarity you express in your words, your love and compassion….this too will pass though who knows how long it will be. Your are doing a beautiful job staying by his side and it will be remembered by God. Offer your sufferings to Jesus, walk in the sunshine, enjoy the smell of rain, and the quiet peace.. Read him the Bible and it will give hope to you both. This too shall pass and eventually will feel like the blink of an eye. I’m sorry your acquaintances are distant during this time of need. make sure you ask them directly to visit as we don’t often get what we do not ask for, including from God. God bless you during this very challenging time.

    Liked by 1 person

  2. People would be lying if they have never felt the same. I have only been on this trip for 3 b yrs with my Mom but experienced alot of what you have. My job doesn’t understand nor do they care. I have a 15 yr old that I have to be there for her too. My prayers are with us all.

    Liked by 1 person

  3. Pingback: We’ll Keep the Memories | crlives

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