Sunday, Laundry Day

We'll be staying in today, it's our laundry day. Trust me it needed to be done, it's hard to believe how many towels two people go through in a week.

Sues Daughter stopped in to visit yesterday so we didn't make it to the antique/craft shop like I'd planned.

Sue did go visit a friend with me. She really enjoys seeing old friends but I think she'd rather they come to our house because she is concerned about having an accident. That happens sometimes because of her having Crohn's Disease, we've been dealing with that for about seven years now, it seems to be getting worse. She used to see old friends a couple of times a week and talk to them on the phone daily. All that changed after she was diagnosed with Alzheimer's. Now they talk on the phone a little bit, when she calls them. None of them (Except family) have stopped in since Sue had them over for my birthday. Three of the guest were leaving for an annual week long trip to Canada the next day. I thought they'd stop by and tell her all about the trip when they got back. That's what has happened in past years. So far she hasn't seen or heard a thing from them this time. I think about talking to them about how their absence hurts Sue. I'm afraid that if I do I might make them angry. In a case like that if word of the conversation somehow get back to Sue she might be upset with me. I feel a little stuck here, got any ideas?

God Bless America, God Save The Republic.

Sleeping More

Sue has gone to bed early almost every night this past week. That is strange considering when I worked a swing shift full time she became quite the night owl trying to keep my schedule. When she laid down last night she said she had a real bad headache. I'm wondering if it could be depression because of the Alzheimer's diagnosis, or stress brought on because of her Daughter's health problems. Last night I heard that the doctor told her (Sues Daughter) to take antibiotics for the lumps under her arms and to come back for another mammogram in six months. I've got some running to do later today (Saturday) I think I'll ask Sue to go along. There is a real nice antique and craft shop here in town, right across the street from Jesse James home (Now a museum). She has enjoyed going there in the past. Maybe getting out of the house will be good for her.

There are comments on Alzheimer's research funding legislation posted at.

God Bless America, God Save The Republic.

Not What I'd Hoped For

In my August 17, 2009 post Our United States Representative Is Coming I said I'd let you know how the Sam Graves (R-Mo)town hall meeting turned out. Graves started by telling how his office works and that they really want to hear from us when we have concerns. He then spoke on legislation he supports and opposes. When it came time for the Questions and Answers I was ready to ask him where he stood on H.R. 3286 the Alzheimer's Breakthrough Act of 2009. I even had notes to help me remember some of the reasons I support the bill in case he disagreed. As they handed the microphone to the person just ahead of me they announced this will be the last question. All my plans shot down in flames. As we were leaving Graves staffers were offering little cards to fill out to anyone that didn't get to ask a question. I filled one out telling a little about Alzheimer's in Sues family history. Once again I ask where Congressman Graves stands on H.R. 3286. I will keep you updated.

God Bless America, God Save The Republic.

Went To Bed Early

Sue is still able to do the majority of the cooking. Tonight while fixing dinner she ask what we will do when she can't do it any longer. There was no response when I told her I guess we'd have to eat what I cooked. I don't know if the silence was an insult or if she was trying to come up with a better idea.

She went to bed early tonight. Tomorrow will be a big day. Shes spending the morning with two of our three Great-Grandchildren, I'll pick her up after work four hours later. She enjoys her time with the Great-Grandchildren. She fears the day that she won't know them. Both of us do, they are two and three years old. There will be no way to explain their Me Me (Sue) not knowing who they are to them. For their sake I pray that day doesn't come until they have time to develop more fond memories of Me Me (Before she got sick) that they can carry for the rest of their lives.

God Bless America, God Save The Republic.

An Example Of Why

This message is also posted at, A Republic, if you can keep it.

I just read a pretty good example of why I'd like to see our elected officials pass H.R. 3286 and S.1492, the Alzheimer's Breakthrough Act of 2009. "UCLA researchers determine toxicity levels of Alzheimer's clusters in brain". The researchers mentioned are working on finding the cause of Alzheimer's. Someone develops Alzheimer's every seventy seconds, finding the cause could reduce the number of folks that are at risk of developing Alzheimer's in the future. The funding that H.R. 3286 and S.1492 will provide will help keep this much needed research going. Expensive? Yes, but I feel it will be less expensive than providing care for the millions of folks that now have Alzheimer's and the countless number that will develop Alzheimer's in the future if this research comes to an end due to a lack of funding.

Please contact your elected officials and urge them to support H.R. 3286 and S.1492.

God Bless America, God Save The Republic.

Thanks go to:
UCLA Newsroom

Today Is Our Twenty Third Wedding Anniversary

Twenty three years ago today in her Brothers backyard in Hemple, Missouri Sue and I made a commitment to stay together through the good times and the bad until death do us part. Our vows did not say until one of you develop Alzheimer's so we will stay and fight this battle together.

Last night I walked into the living room right after midnight and ask Sue, "What anniversary is this?" She looked at the clock and said, "Well yes it is, thank you. Some of my first thoughts were shes getting worse, or maybe she didn't take her medicine. As it turns out she misunderstood what I said, she thought I'd wished her a Happy Anniversary. At that point I did. Maybe my hearing problem is rubbing off on her.

We cooked steaks on the grill and have a quiet evening at home planned.

God Bless America, God Save The Republic.

Plans Change

We had planned on going to get Sues prescriptions filled today (Shes not completely out) but Sue decided she wanted to stay home so her Daughter could call her. Her Daughter had been to her doctor early in the morning for a check up. They found lumps on her breast and under her arm. They were both very concerned because there is a history of cancer in the family. Her Daughter told her she had to get off the phone but she would call her back later. She hasn't called back or answered her phone when Sue calls her. I'm thinking she just needs some quiet time to think/pray. My being sure of that isn't doing much to calm Sue.

God Bless America, God Save The Republic.

Our United States Representative Is Coming

Sam Graves, our United States Representative is coming to Saint Joseph to hold a listening-tour stop on August 24th. I plan on going, I've already RSVP'ed. I hope to find out where he stands on H.R. 3286. This legislation authorizes the necessary resources to restore momentum in the pursuit of better diagnosis, prevention and treatment of Alzheimer's Disease (Continue Reading). When he e-mailed me on the matter Representative Graves was a little vague.

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August 11, 2009





Mr. David Glenn Schantz

525 East Missouri Avenue

Saint Joseph, Missouri 64504



Dear David:



Thank you for contacting me regarding funding for Alzheimer's research. I appreciate hearing from you.

As you may know, the National Institutes of Health is the focal point for federal health research. An agency of the Department of Health and Human Services (HHS), it supports more than 300,000 scientists and research personnel working at over 3,100 institutions across the U.S. and abroad, as well as to conduct biomedical and behavioral research and research training at its own facilities.

As the House of Representatives begins work on the appropriations bill funding NIH for the coming fiscal year, please know that I will be sure to keep your views and concerns in mind. In the meantime, if you have any further questions regarding this or any other matter, please do not hesitate to contact me or visit my website at www.house.gov/graves.



Sincerely,

Sam Graves
Member of Congress

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I hope to get something better than, "please know that I will be sure to keep your views and concerns in mind." when I urge him to support Alzheimer's research funding in person. I'll let you know how the meeting turns out.

God Bless America, God Save The Republic.


Thanks go to:
The St. Joseph News-Press
Alzheimer's Association

A Quiet Day

The plan for today had been to go to the hardware store to get some paint swatches. Sue wants to paint the living room, it does need it. Last nights rain has caused it to be very hot and humid. That causes problems with her Chronic obstructive pulmonary disease (COPD). So today will be spent watching SyFy TV, playing games and doing puzzles on the computer and enjoying the AC.

Sue refuses to stop smoking despite her COPD. I heard about another Alzheimer's victim that like Sue also had COPD. One day a caregiver was planning a run to the store. When ask if he needed cigarettes the Alzheimer's victim ask if he smoked. They told him no and let it go at that. He never ask for another cigarette. I'm afraid her cigarettes are one thing Sue will never forget.

God Bless America, God Save The Republic.

Thanks go to:
The Mayo Clinic

Tired/Cranky

Friday the 14th Sue was worn out. She got up Friday morning like normal but tired early. I'm thinking the birthday celebration she put on for me (Yesterday) was to much for her. At about 7:pm we we're watching TV, Sue went in our bedroom to play games/puzzles on the computer. I've (We've) heard this is good for the memory. At 7:30 PM I found her in bed, sound asleep. I let her sleep until about 11:PM, the time she normally takes her medicine, big mistake. She didn't want to get up, "I'll do it in a little bit". A little bit was nearly an hour later, after several attempts to wake her.

God Bless America, God Save The Republic.

Happy Birthday To Me

Sue did a great job of putting my birthday party together. I think there were twelve guest in all. The house is a wreck, I'll worry about that tomorrow. Two of our three Great Grandchildren were here. Both of us always enjoy our time with them. At two and three years old they know that when Pa Pa (That would be me) says no the dogs have had enough treats Me Me (Sue) will give you more to take to them. Sue played with them and tried to keep up. She has told me that she dreads the day that she won't know them. At such a young age they won't be able to understand Me Me not knowing them. She is concerned about the hurt it will cause them.

God Bless America, God Save The Republic.

Happy Friday

Earlier this afternoon Sue walked into the room and wished me a Happy Friday. Then she said this is Friday isn't it? I told her no it was Tuesday the eleventh. Then she remembered that Thursday will be my birthday. We haven't really celebrated our birthdays for quite some time. She is planning my party and inviting guest now. I'd be OK without a party myself but Sue really enjoys having old friends over. She was feeling pretty bad when they weren't calling or coming around like they used to. Having friends over last week really cheered her up. She seems to be enjoying planning the party too. If having a birthday party for me will help her in anyway I'm all for it.

God Bless America, God Save The Republic.

Visitors

Sues Brother, Sister-In-Law and Mother all stopped in to see the hardwood floor and to visit today. Sue really enjoys having guest over and the day seems to go better for her even after the guests have gone.

God Bless America, God Save The Republic.

Alzheimer’s And Crohn's Disease

In the first post at Alzheimer's In The House I mentioned Sue having several health problems. One of them is Crohn's Disease. The doctor that diagnosed her Crohn's didn't put her on a strict diet. He simply told her of some foods that could cause her some problems and told her to make up her own mind about them. She figures that means she can have anything in moderation. Over the past month we have heard (From several sources) that coffee/caffeine might help in the prevention of Alzheimer's. Coffee/caffeine is on the list of things to avoid if you have Crohn's Disease. Sue drinks coffee until she feels it is aggravating her Crohn's then she takes a break from it. We do feel that her thought process and memory are better while she is able to drink coffee.

God Bless America, God Save The Republic.

Thanks go to:
Web MD

Visitors, Another Question For Caregivers

Four of Sues old friends stopped in tonight. One of them brought their significant other along. That gave me someone to visit with but I never got the chance to mention the Alzheimer's Association web site like I'd planned.

I am sure Sue really enjoyed the visit, so did I. Our guests seemed to enjoy themselves. The girls talked about the Children, Grandchildren and Great Grandchildren. The one male guest and I just swapped stories like two oh boys will do.

Now I'm wondering, again. Do you suppose Sues old friends could have been staying away because they were in a state of shock/denial? Maybe now they see that she is still the same oh Sue they were there for when she was battling other health issues. I hope so. I hope they will realize how important their friendship is to Sue and continue coming around to help us fight this battle.

God Bless America, God Save The Republic.

A Question For Caregivers, On Old Friends

How many caregivers out there have noticed that some of your loved ones long time friends seemed to become real scarce after your loved one started showing signs of Alzheimer's or after the diagnosis came in? Did you ever wonder, why is that? The news media has made it pretty clear, Alzheimer's is not contagious, so they shouldn't be concerned about catching it. Could it be that they don't want their last memories of your loved one to be memories of an Alzheimer's victim? I feel that could be in some cases. One of my family members refused to go visit an old friend that was dying of cancer. He'd let it be known that he wanted his last memories of his old friend to be memories of the guy that rode the Harley to the bar and didn't leave until they threw him out. He didn't want to remember him as the guy that couldn't get out of bed to go to the bathroom without help. I think most of them stop coming around because they don't understand Alzheimer’s disease,fear of the unknown. One of Sues old friends is supposed to stop by tomorrow. Sometime while she is here I'm going to walk into the room their in to tell Sue about something I just read at the Alzheimer's Association web site. I'm thinking that if I do this every time one of them comes around they just might become curious enough to take the time to visit the site themselves.

God Bless America, God Save The Republic.

Took Up The Living Room Carpet

Sue is doing great today. We were sure that there was a hardwood floor under our living room carpet. Sue and I took the carpet up this afternoon. The hardwood is going to be beautiful after it gets mopped. Sue has been removing the staples that were in the carpet pad. Right now she is calling friends and family to tell them about how great it looks. I think seeing her get this excited about working on the house is great.

God Bless America, God Save The Republic.

Good News

Last month there was some good news released for the victims of Alzheimer's Disease and their families. If passed The Alzheimer's Breakthrough Act of 2009 (S. 1492 & H.R. 3286) will provide needed funding for researchers in pursuit of better diagnosis, prevention, treatment and possibly a cure for this devastating disease.

We have also learned of some good news for people like my Wife Sue with younger-onset Alzheimer's. The Social Security Administration (SSA) held a hearing to examine whether these individuals with younger-onset Alzheimer's disease or related dementias should be included in its Compassionate Allowances Initiative. (Continue Reading) Adding younger-onset Alzheimer's and related dementia victims to the Compassionate Allowance list will take a huge burden off the shoulders of the victims and their family members when bills come due.

God Bless America, God Save The Republic.

Thanks go to:
The Alzheimer's Association

Welcome To Alzheimer’s In The House

Alzheimer’s In The House was created because my Wife, Sue has had a number of health problems for several years, no doubt some of them will be mentioned here from time to time. About four months ago we started to notice she was having memory problems. We were quite concerned because her Mother has Alzheimer’s disease. Her Grandmother passed away as a result of Alzheimer’s, and the family has reason to believe her Great Grandmother was also a victim of Alzheimer’s but in her case it went undiagnosed. When Sue went in for testing they first told her she had Dementia. Now they tell us she has and are treating her for the first stage of Alzheimer’s disease. So to help her (us) out I've taken on a few more of the household duties/chores. I know that I'm not the first person to find theirself in this situation. Sue and I had her Grandmother in the home with us for five years before she had to go into a care facility. Back then I was working full time, Sue was the primary live in care giver.

Alzheimer’s In The House will be a place for us to tell others what we're doing to deal with the problem of living with Alzheimer’s. We hope others will share their stories/solutions to problems with all of us. We'll also share news about new treatments or possible cures, Hope. If you know of anyone that is dealing with Dementia or Alzheimer’s disease tell them to stop in and see us.

God Bless America, God Save The Republic.