Thursday, July 30, 2009

Living With Alzheimer's

This is the first in a series of posts I plan to do in which I want to share what it’s like living with an Alzheimer’s family member.  Perhaps I am doing this because I’m looking for a therapeutic outlet.  IMG_0369

Caring for a loved one with Alzheimer’s is a 24/7 a day job.  You don’t get a vacation.  The weekends are not your own.  You cannot spontaneously go to a movie.  Even planning a trip to the grocery store requires that someone is always caring for your loved on.    You are on the clock with no relief in sight.

In this post, I want to focus on the communication aspect of talking to your loved one.  For a toddler, teenager and adult, if you have a stomach ache you know how to convey that message.  For an Alzheimer’s patient who is easily confused, a simple question becomes a foreign language. There are times that nothing makes any sense.  You instantly revert back to caring for an infant and try to guess what’s wrong.

I’ve learned that simple questions work the best.  Short sentences are a must.  Forget any big word you just read from your daily email from Webster’s.  They don’t work. 

At times, I am embarrassed to admit, I find my self yelling.  It’s those times, that my husband steps in and settles me down and takes over.  When my husband is at his last straw, I try to do the same for him.  Anything to break the tension.  We both are learning not to criticize and praying for patience everyday.  However, when she asks ‘Who is that baby?” every single day, we feel as though we want to pull our hair out.

Thank goodness for Respite Thursday.  Budgets cuts have reduced our hours from 22 a month to 8, but we try to make the most of this time away. 

If I learned anything from this experience it is that patience is the utmost virtue.  Lord, I need a million times more of it!

Don’t forget to check out my give a way…you have until noon on Saturday.  Give A Way


 

19 comments:

Nurse Nancy said...

I can so understand your issues. I do not have Alzheimer's directly (at the moment) but struggle with the caring of my Mom every day. Phone calls, confusion etc....thank God my brother is there to deal with some things. He has his own issues.....hang in there. You are a good person to take this on.

Daryl said...

Its so hard to see parents age and when they are no longer themselves its even harder. I stopped working to spend the last few months of my dad's life helping take care of him and then just when we (my sister and I) thought it was safe to exhale, mom died.

(((Deb)))

Laura ~Peach~ said...

i so understand... i spent several years working the alzhimers unit at one of the many nursing homes i have worked in it is so hard and so challenging... thank god for respite care and i am appaled that they have cut you to 8 hours a week...you have taken on a burdon that is totally of love and people dont like it or dont always agree with me when i say this... but there may come a time that you can not care for her at home and there is no shame in seeking outside help or care...for many it is because of wandering and the violence that some have with this horrid diease and for others 24 /7 care just becomes too much... we used to offer week long respite care at one home... i dont know whats in your area but sometimes the bit of time is enough to recharge the batteries for another spell of total care.... i wish i were closer i could do some sitting for you to be able to get a break, if only to go out to eat or to the store thoughts hugssssss and many prayers.

Laura ~Peach~ said...

sorry ment a MONTH for 8 hours respite... unreal... sigh

Jann E. said...

I'm so sorry you have to see your mother go through Alzheimer's. I can only imagine how painful, frustrating, and difficult all around, that it is. A good friend's father had Alzheimer's and she saw him through it, alone. I'm grateful you have your husband at least; small concession, I know. My prayers are with you all.

Mental P Mama said...

It is, without a doubt, one of the hardest jobs there is. I wish I were closer--I'd be happy to give you some well-needed breaks. And keep your sense of humor as well. Very necessary.

JMJSL said...

What a beautiful post. It must be so difficult, and I will pray for your family.
Teresa

Grandma J said...

It's one of those diseases that touches everyone to some degree. Watching someone who guided and nurtured you into adulthood become mentally dependent is heartbreaking.

jojo said...

I am so happy that you are doing this 'series' of information. It is something that needs to be out there...I appreciate it and I look forward to hearing more. Take care Deb and God Bless you and your family. I will be thinking of you...

Country Girl said...

It's heartbreaking, I agree. What goes around comes around in this world and when you need help, it will be there. Tenfold, I hope.

I'm glad you reminded us of your situation. You'd never know from your posts that things can get that bad. It's a testament to your good naturedness! Hugs to you, my friend.

Living on the Spit said...

You are a wonderful daughter and the care you are giving is so needed and I am sure in her own way, is very appreciated. It is my biggest fear in life, that I will grow old with no one there to take care of me.

You always have us to vent with and to understand what you are going through.

Journey said...

I understand your feelings as my mom lives with us and has Alzheimer's.

In the past three months we have seen tremendous changes and there are days when it is so frightening to watch her slip away.

It's that role reversal thing - now it's my turn to care for her.

Asthmagirl said...

Gosh these are tough things to hear. Knowing that your loved one is so confused and scared is hard enough but to have so little respite...

It is similar in the disability field. Respite has been cut to the bone and many families are pushing to cut employment services in order to pull money back into respite. In which case people would lose job opportunities, we would lay off, more folks would need respite... It is hard... The pie can only be cut in so many pieces.

Chin up Deb. You're doing something remarkable and if she knew, she would be so grateful.

Mauigirl said...

I know how difficult it is; my mother-in-law has Alzheimer's. It can be so frustrating and exhausting. My mother-in-law eventually had to go into a nursing home last year when my father-in-law couldn't care for her anymore; she's doing well there and my FIL visits her every day and helps her eat her meals. We visit her too, and he often brings her up to see us at our home as well.

I admire you for taking care of your mom at home - it is definitely a full time job and very hard. We took care of Mom for a few nights when Dad was ill and it was not easy so I can only imagine how it is to do it full time.

Sugar Creek Beads said...

Hang on, for as many insane moments you will have, you will see little snippets of that person, who you care for so dearly, peaking through. I just buried, last week, a parent with Alzheimers and although it was a trip through hell and back, the memories and moments of laughs and tears, are worth being with them when they need you the most. Remember the Lord won't ever give you more than you can handle. Stay strong and God Bless your journey.

DevyneCreations said...

Lord knows it's a daily struggle, but I thank him in advance because the experience is making me stronger everyday.

I'm a caregiver for my Grandmother she has Alzheimers...The hardest job I've ever had! Love will make you move the world if you have the ability to do so...

Blessings on your journey

imom said...

While my grandma did not have Alzheimers, she was 93 when she died and needed a lot of care, especailly in the last couple years of her life. It was really tough on my mom.

I'll keep your family in my thoughts and prayers.

Maria said...

I can't imagine what this must be like but that photo is wonderful!

Joyce said...

My Mom had Alzheimers so I know what you and your family are feeling. I follow another gals blog about her Mom and will send you her blog when I pull it up later this week. Lucky you even get a rest for 8 hours in todays times. When we meet up in Sept for lunch with the little kids feel free to bring your Mom with us if you can manage two at once. I found some Alzheimers groups are great for the families and I use to be involved in the one here in Atlanta years ago when I first lived here and did a panel for them. I usually do the Alzheimers walk in the Fall.
Joyce