Friday October 31, 2008

 

 

Why do drugstores make the sick walk all the way to the back of the store to get their prescriptions while healthy people can buy cigarettes at the front?

 

 

I know. I have a real soft spot in my heart for caregivers. Maybe I went overboard last night. I ended up sending 50+ emails to newspaper editors and government officials last night about November being the National Family Caregivers Month. I received an email today from Helene Moore part of which states, “word of mouth is potent, and my words are spreading, slowly but surely. So, maybe. Just maybe one of those emails will touch someone’s heart! I’ll see. But then I’ll never know but that’s OK too. Someone will have read the emails anyhow.

 

So, to all caregivers. There undoubtedly will come the time whenever I won’t be able to verbalize or to share this. While I have the wherewithal to do it, I give you my thanks and respect for all you do for your loved ones and friends. The energy you give, the sacrifices, the hurt and pain you sometimes go through, the joy and sorrow along with your own need to have rest and to be comforted just like anyone else. Your patience with me (and I speak on behalf of those who can’t) is appreciated. Pure and simple. I don’t know how else to say it.

 

Thank you, Pam. You are the best wife anyone could have. I am blessed that God gave you to me through the paths that we least expected. Please remember this in your moments of weakness and despair.

 

 

I finally started to make a few posts on the forums on the Lewy Body Dementia website. One of the forums is specifically designed for those of us who actually have LBD. So far, this forum is slow. But I’d like to see it be an avenue of support we can give to each other. Certain things will be easier to understand and to deal with after hearing it from another sufferer.

 

The source of most of our frustrations and anxiety are the result of living in the future, or in the past.

 

 

David

Thursday October 30, 2008

 

 

WHITE HOUSE Proclaims November As

National Family Caregivers Month 

 

 

 

October 2008 — National Family Caregivers Month, 2008  A Proclamation by the President of the United States of America.

Asking for help is a sign of strength, not weakness, because it is an acknowledgement of the difficulty of the situation at hand. Sometimes that is not always an easy thing to do; however, we owe it to ourselves and our families to really try. You will both be better off if you learn to:

 

• Put guilt aside.
• Overcome negative self talk and insecurities.
• Ask for the help you need and accept help that is offered.
• Recognize and accept that you have a RIGHT to time off.

 

It has been said, “It takes a village to raise a child,” the same holds true for family caregiving.  It is far too important of a job to go it alone. Reach out and ask for HELP!

 

National Family Caregivers Month (NFC Month) — observed every November — is a nationally recognized month that seeks to draw attention to the many challenges facing family caregivers, advocate for stronger public policy to address family caregiving issues, and raise awareness about community programs that support family caregivers. It is a time to thank, support, educate, and advocate for the more than 50 million family caregivers across the country.

Top 10 Ways to Celebrate National Family Caregivers Month 2008

There are many ways to celebrate family caregivers and to take action and communicate the important messages of NFC Month. The following are ideas and guides to help you create a successful National Family Caregivers Month in your community:

1. Offer a few hours of respite time to a family caregiver so they spend time with friends, or simply relax.
2. Send a card of appreciation or a bouquet of flowers to brighten up a family caregiver’s day.
3. Encourage local businesses to offer a free service for family caregivers through the month of November.
4. Participate in the National Family Caregivers Association’s FREE national teleclass to learn how to communicate more effectively with health care professionals. The 2 free one hour sessions will be November 6 and 13 at 2 p.m. ET. For more information Click here.
5. Help a family caregiver decorate their home for the holidays or offer to address envelopes for their holiday cards.
6. Offer comic relief! Purchase tickets to a local comedy club, give a family caregiver your favorite funny movie to view, or provide them with a book on tape.
7. Find 12 different family photos and have a copy center create a monthly calendar that the family caregiver can use to keep track of appointments and events.
8. Offer to prepare Thanksgiving dinner for a caregiving family in your community, so they can just relax and enjoy the holiday.
9. Take a few minutes to write a letter encouraging your mayor, county executive, or governor to issue a local proclamation establishing November as National Family Caregivers Month. Contact information for state government officials can be found at www.firstgov.gov.
10. Help a family caregiver find information and resources on the internet or to locate a local support group.

 
Do you know that family caregivers provided more than 306 billion dollars of caregiving services each year, helping chronically ill and disabled loved ones deal with life’s basic functions? Do you know that 78% of seniors that need care receive it from family members, over 80% of all homecare services are provided by family, and that businesses lose as much as 34 billion annually due to employees’ need to provide care for loved ones 50 years of age and older?

This is the perfect time for a story about family caregivers and the contribution they are making to our community. This story will speak to everyone because today the concerns of caregivers have moved from being a private family situation to a societal issue. Today policy makers, employers, insurers, and healthcare professionals are all addressing these issues.

I’m seriously considering contacting some of the local newspapers and television stations to remind them of NFC Month. Maybe they’ll run a story or at least an editorial. Let’s see what happens.

David

(and I cheated today. I took most of the information from the NFC website)

Wednesday October 29, 2008

 

Don’t be afraid to say “I’m sorry.”

 

Yes! It’s our first day of snow! Big snow flakes whorling through the air. Looks like there’s 1″ out there so far and possibly getting 3″ today. Not too bad for this time of year. I remember it snowing at the beginning of October.

 

I thought I’d write some thoughts about caregivers today. I’m sure most of them already know these things but I’ll jot them down anyhow.

 

1. Don’t worry about whether or not something makes sense. I have emotions which are still powerful and valid — I just may not be able to piece everything together. I actually get a little more distressed and anxious when I feel I’m not understood. I would prefer that my emotions are accepted instead of the reasons or logic behind something which leads up to the emotions.
2. I’m good at still reading body language. Try to keep a warm and gentle facial expression for me when you are trying to correct me or to help me. It would help to keep my anxiety down.
3. Let me save face. I probably already know something is wrong but I still have an ego!
4. Sometimes it’s a little more difficult for me to be able to abstract. Keep it easy. Just use simple concrete language and questions.
5. Ask me how I feel about things but don’t try to talk me out of something (unless it’s dangerous for me). Just let me know you’re trying to help me.

I keep talking about how our brain continues to grow whenever we learn new things. So, today I’m learning a new knitting technique called Portuguese knitting. I read the review about it on Carole Wulster’s Knitter’s Blog. I’m excited about it like a kid at Christmas. It doesn’t take much to make my happy! From her review it may help me to knit more smoothly with the tremors. It might even help to cut down on my right rotator cuff problem if I knit to much.

 

Oh, yea. Finally pleasant dreams last night. Hurrah!

 

Now to lunch and then on to learn Portuguese knitting.

 

David

Tuesday October 28, 2008

 

I started on a higher dose of Namenda today. 15-mg. Will do this for 1 month then go up to 20-mg daily. So far I like this med and am very impressed with it. After hearing so many people talking about the side-effects their loved ones have, I am indeed fortunate. Thank you, Dear Lord!

Am feeling well but want to remind myself when I read this down the road about yesterday. The National News last night mentioned ‘Groundhog Day‘ as a metaphor to the economy on Wall Street. Very seriously, I immediately said to Pam, “That anchorman just made a mistake. Ground Hog Day is in February and it isn’t on Wall Street. It originated right here in PA not far from us in Punxsutawney. I can’t believe that the news has the season and place all mixed up.” She was kind and gentle stating, “Honey, he was talking about Wall Street….” and proceeded to explain it to me. For the life of me, I just didn’t get it.

Actually, I kinda have to laugh but it’s also scary. I’ve also been witty and have loved parables and metaphors. When I taught in high school, in college and in medical schools, one of my top methods of teaching was using parables. What has my brain come to? But I’m still happy with what I have and I’ll keep plugging along.

“I was dying. Somewhere. Confused and disoriented. Nurses and doctors rushing me to somewhere. Oh, I was in a hospital somewhere. Somewhere. On a gurney. Lucidity and Lewy Body land engulfed me while I was trying to sit up. And then I heard it. The metallic reverberation of a jail cell opening and closing. Looking behind me, I see prisoners in shackles. All males. Adults, adolescents and young boys. All in handcuffs. All in a single line slowly walking through the jail door. The younger boys not even knowing what was happening…snickering and grinning with cocky attitudes. Those poor kids, I thought. “Hurry, she said.” The sound of the nurse hollering while charging through with the gurney. “I’m so confused.” That thought echoed through my mind over and over. And I’m dying.”

I awakened in a state of befuddlement. Dazed. Feeling like I was fading away. All at the same time that I realized I had been dreaming. I tried to get out of bed so I wouldn’t go back to sleep and continue the dream. But I could hardly move. I really did feel confused and disoriented and yet the normal part of my brain was trying to figure out what the dream meant –all at the same time. I walked to the bathroom and thought I was in a hospital room. I couldn’t shake that awful feeling this morning. I couldn’t wait for that cup of java as I shuffled out to the kitchen. That’s when Pam reminded me that we were both going for blood work this morning and that I was fasting. Bummer. I was slowly coming alive. I couldn’t shake it though. It lingered for hours. I don’t even remember that needle going into my vein. Oh, yea. It was just a test for triglycerides. The Niaspan is working. Let’s hope those numbers have dropped even more. When we arrived home, I felt absolutely fine. Go figure because I can’t figure it out. Won’t even try tonight. But it’s OK. I’m greatful for the day and for what I do have.

Pam, I feel sorry for you sometimes. Having to deal with my changing states of confusion yet being so loving and kind. Thank you.

And now off to bed……………………..David