Help your Caregiving Friends.

Jim carrying the tree to our vehicle at the tree farm. Dec. 2006.

Jim carrying the tree to our vehicle at the tree farm. Dec. 2006.

It’s that time again. You either love it or hate it. Few and far between are the ones with no opinion. The Christmas season brings back so many wonderful memories, it is hard to not become sentimental at the first notes of a favorite carol or feel as if something is missing without eggnog in the fridge or white candles in the windows. While all of this is remarkably picturesque and the stuff movies are made of, there is a lot of pressure and stress that tags along for the merriment.

So, I have decided to try to help all of the friends and family for caregivers of dementia patients. I am sure this list could have quite a few more things added, but this is what I have right now. As soon as I hit “publish” I will think of ten more things.

First of all, if you are taking the time to read this, you care and you are commended for being a supportive and concerned friend. But, (there’s always a but, right?) as much as you want to help and as much as you want to be there for your friend, it is as impossible for you to entirely understand what they are going through as it was for you to do so before you had children (or grandchildren). There is just no way to convey the enormous emotional and mental overload that comes with both. So be patient and let them seem forgetful and let them be late without glancing at your watch and let them forget to thank you for the wonderful dish you dropped off. They are grateful, but they think at the wrong times to mention it. And to those reading this who have “disappeared”…..don’t worry. You will be welcomed back with open arms. Don’t be embarrassed by the amount of time that has gone by; for most caregivers, days run into weeks that run into months and they aren’t really 100% sure how long it has been since you two last chatted anyway.

So here are the beginnings of some tips for friends and neighbors of caregivers. Please feel free to add your own in the comments section.

What a wonderful surprise this holiday decoration was when my friend dropped by to hang it on our front porch. That is the Christmas spirit….

What a wonderful surprise this holiday decoration was when my friend dropped by to hang it on our front porch. Words don’t convey how special this simple item now is to me.

  • Just be there. As their loved one progresses, it is lonely anytime of year. But during festivities and social events and times of sentimentality, life can be bittersweet. Just having a friend to be present is a huge gift. It could be just hanging out together, or it could be watching a tv show or calling or sending an e-mail or dropping by to check in or…..ok, you get the picture. Let them know you are thinking of them. It helps. A lot.
  • Help with decorations. We just went and cut our tree at the same tree farm we have been going to for 6 or 7 years. Love this tradition. It is our tradition. I can’t change that. I don’t want to change that. But this year, I had to come inside, get the scissors, (I had asked Jim to, but he brought them to the backyard first and then brought them back inside because he didn’t see me out there) cut the twine holding the tree to the roof of our van, put on the gloves and lift that tree and carry it to the bucket I got out and filled with water and I set it up and…ok, you get this picture too. Right? You know what? I don’t mind doing all of this. But I did it with Jim standing by watching and I knew it hurt him because he knew he should be doing it and it hurt me because I felt the same way. It was not a moment of triumph but a moment of inner-sadness. While I was trying to hang some lights out front, to keep that tradition alive as well, a wonderful friend popped by with a surprise; a decoration for our front porch. Not only did she bring it by, she hung it up and asked if she could help me hang the lights and garland.
  • If there are children in the home, ask if you can take them shopping for the caregiver. Or, better yet, ask the caregiver if you can borrow their loved one for a short time and take the patient to shop for the caregiver. If they are in a home, could you grab a little something the next time you are at the store, wrap it and drop it by the nursing home with a note it is from “Jim”? Can you imagine the wonderful feeling that would bring and the change in a day and a change in an attitude that could bring?  I no longer really care about opening presents Christmas morning. Yes, it is nice to a have something to unwrap and be surprised about, but really and truly, I know it would mean so much to Jim to do this for me, without me being the one to take him and to help him pick out something. A friend took Jim last year to pick out something for Frances and for Brad. My parents took the kids to pick out something for me. It doesn’t have to be the same person doing everything. Just do what you can to help in a way you are comfortable with. You might have to get creative, there are so many scenarios a family could have, but if you are able, please try to bring some Christmas spirit to the situation.
  • Help them help themselves. I want so badly to bake cookies, decorate, send out cards, visit friends, wrap gifts, sing carols and watch night after night of old holiday classics….but I just can’t seem to be able to figure out what I am doing. I’m not saying bake the cookies for them, but maybe see if you can stop by and help them. Or help them with cards (I am ashamed to admit we haven’t sent any out in years and now we only receive a handful) or ask them if they can sit with you and watch A Christmas Story (trust me, they need a good laugh). Just setting aside the time and making the effort and commitment to do these things will pay off because they will be so glad they did. And having your help will make it even more special.
  • Please do not stop inviting them to your annual party. They know you are still having it. They know they used to go. They know the only reason you haven’ t mentioned anything is because you have no idea what to do. Invite them anyway. Let them tell you “no” or let them find someone to stay with their loved one so they can join the fun. That is how much it means to them….they will pay someone and work hard to find someone to “sit” for them so they can attend. Better yet, be the friend who doesn’t care about going to said party and offer to sit for them so they can go catch up with friends and neighbors. This type of socialization and fun can be the difference between depression and happiness. Can you find a way to include them in your fun? If you are going to view holiday lights, can they tag along?
  • On that note, offer anytime to just come sit with their charge so they can do some holiday cheer. Whether it be dropping off gifts to friends or going to a movie or dinner or out for some holiday shopping ALONE, that is a gift to them all upon itself.
  • Don’t forget, when the New Year comes, think of them and invite them over or out or come by to help ring in 2015. And while you are at it, tell them how much you have missed them in 2014 but that you understand. Make a resolution (and stick to it) to visit them or contact them more regularly because your friendship means so much to you. It means as much to them, but they are just too overwhelmed to share that with you. Honestly, that is the best gift you could give. It doesn’t matter if you are ashamed because you fell off the face of the earth when they became engrossed in caregiving. It is never too late to come around and admit your selfishness and inconsideration and to make amends. They probably feel guilty for not calling you more or trying to reach out to you too. Relationships work two ways, but at some point there is always a person who gives more and a person who takes more. I have learned I am in the stage of taking more and it is a hard, hard, hard thing to admit and to do day after day. If you were previously the one who was usually a giver, you know what I mean. If you are a friend who usually takes, it’s your turn. You have to believe me, they miss your friendship and will most likely welcome you back with open arms. They didn’t stop coming round because they wanted to and it had nothing to do with not wanting to be your friend.
    Jim lifting Frances up for topping off the tree in 2010.

    Jim lifting Frances up for topping off the tree in 2010.

    Just give them a hug and be grateful for another day, another holiday season and another year together!

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (3)

Merry Christmas Story Telling

 

You-Are-Not-Alone-In-This-Motivational-Love-QuotesI want to wish each and every person a very Merry Christmas. When I started this blog back in February, I had no clue of the reach I would have around the world. I have been amazed at the response and I have been humbled by the support and words of encouragement. I am inspired daily to keep going and to do more. Sometimes I am not sure I can. Other times I don’t think there is anything that can stop me. As I sit looking at all I have to do in order to be ready for Christmas morning, I would be remiss if I didn’t write a special post to let all of you know how much your love and kindness have meant to me. I get many notes and messages telling me how grateful many readers are that I share our story. But our story is really the story of  many. In the process, stories are shared with me. I cry. I laugh. I get inspired. I would like to take this special time of the year to share some of the very touching e-mails that have been sent to me. My hope in sharing these heart wrenching tales is to help you not feel alone and to help educate those not familiar with the long goodbye process of Alzheimer’s Disease. I am sorry I am not able to share ALL of the notes I have gotten, but since there are well over 200, I will save some for later and  keep this a reasonable length. I thought Christmas would be a wonderful time to share these stories with EVERYONE. For me, the best Christmas present would be a cure for Alzheimer’s Disease. Since that doesn’t seem likely between now and tomorrow, I will settle for lots of help and support getting a cure to come about in the next year. (I am ambitious) Or at least help spreading the word and contacting those that can make a difference; Your Congressmen and women. Please let them know how important it is to keep funding for Alzheimer’s Disease Research in the budget. Let them know you are watching and passionate about this. There is no other way we are going to see this happen. Please help with my Christmas Wish by contacting them. Please visit this page for links and information on contacting your representative. There are no excuses not to do this.

In the meantime, please read some (I will continue to share over the coming months) enlightening and heartbreaking stories:

You have written about my thoughts, concerns, breakdowns, anger, and hope……lessness. My husband was an airline pilot.  Smart.  Funny. After a year of tests, he was finally diagnosed at 55.  I had two children at home, the youngest was 12.  I know you know my story… you wrote about it. We, too, became involved.  Peter (my husband) was chosen to be a member of the National Alzheimer’s Association Advisory Board.  We gave speeches.  We too, walked on Washington and spoke to our Congressmen.  We were featured in ads for the Alzheimer’s Assoc. and in training videos for caregivers.  For the past 5 years our newspaper has been doing an article on Peter which appears on the front page of the Sunday-after-Thanksgiving edition.  They are following him ‘until the end’.  We were asked to appear on FOX news and with Tom Brokaw, and on and on.  It was exciting and we felt we were helping the cause. 

Yesterday, the day I read a portion of your blog, I put Depends on Peter for the first time.  It was long overdue, but I haven’t wanted to take that step. Two things you wrote on that first post I read, jumped out at me and made me realize that perhaps I am not alone in the thoughts that are constantly doing battle in my head. Shortly before Peter was diagnosed, I found out he had been cheating.  I was in the process of figuring out if i wanted to leave (yes, I did) when he was diagnosed.  “My parents raised me to take the high road, not the easy road.”   I stayed.  Then, when our public appearances waned and his life was not as busy,  I found out his “wandering” had continued.  He asked me for a separation “So I don’t have to lie to them (his girlfriends) anymore. “We could not afford two households, and I knew there was no one else who would care for him when things got bad, so I stayed.  I made his meals and washed his clothes while he went to bars and took trips with his girlfriend of the minute.  Since AD no longer afforded him the ability to cover his tracks, the kids found out and told me I should leave him.  My kids!!  But “my parents raised me to take the high road, not the easy road.” So, I stayed. I didn’t want my kids to end up having to take care of him when all the girlfriends figured out what was going on and left.  Which they did. I once again took off his wet and dirtied clothes and once again scrubbed the floor. Then I went and got the Depends .  “This…this…cardboard” he said as I put them on him.  “It will be ok.  This kind doesn’t get wet” I said.

In September, Peter lost his balance, fell head first into the street and suffered (what I believe) was a concussion.  He was taken to the hospital via ambulance as he had a large gash in his head for which he received stitches.  He has not been the same since.  He was in the hospital for over a week, then rehab as he was no longer able to stand nor walk.  After two weeks of rehab and no improvement, insurance refused to pay any longer and he was to be released.  However, they would not release him to my care as he is considered a “two-person assist”.  I was given three days to find a facility that would accept him.  On Oct. 18, he was admitted into a personal care home.  From the moment of the fall he dramatically changed and has not recovered…at all.   He can no longer stand, walk, see (very little), speak (very little and not intelligible), nor feed himself and is completely incontinent.  He only knows who I am on rare occasions and doesn’t recognize our children at all.  He is not aware of his surroundings. Sometimes, though, as I try and make some conversation which he shows no sign of understanding, he begins to cry.   It has been a very difficult few months.  I wish I could say life has become easier, but it has not.  Under the circumstances, I thought I would have a sense of relief, but I do not.  I just find myself on another path of dealing with this disease, completely as unprepared as I found myself on the past paths. 

          -Thank you J for sharing such a personal and intimate look into your new life.

This time of year is really hard for both Henry and me. I don’t know about you but I feel I am doing more and more and Henry is unable to do less and less.  I can’t believe what a decline I have noticed within the past few weeks.  I don’t know if it is because he feels down at this time of year or that his situation is progressing. I am really scared as even though I know what is happening, I don’t want it to happen.  I try to do all the things we used to do together, having to see if there is some kind of happy response.  We went for our Christmas tree and when he was well this was such a happy time, picking the tree, tying in on the car, getting in the house and then starting to decorate it.  This year it was entirely different.  It was like Henry didn’t care one way or another whether the tree is there or not.  It seems that everything I am trying to reinvent of our past is not working and then I become depressed because I have to stop and say listen what is wrong with you, it is never going to be like that again.  Even though I know this, I always have a glimmer of hope that one day all this will go away and he will be like he was 25 years ago.  I miss those times.

Our tradition was on Christmas Eve we would have all my family get together for a big dinner and celebration with my Mom and Dad in addition to all the children, grandchildren, etc.  and Christmas Day, we would celebrate a traditional Hispanic Christmas with Henry’s entire family.  I am trying to keep my Mom and Dad’s tradition of having the entire family over and I have decided do this the past few years because I feel if one of us don’t try to keep our family together, we will be stranded all over the place and sooner or later everyone will be parted from each other.  This year, I am hosting the Christmas Eve tradition again, but in all honesty Karen, my heart is so heavy that I am just going through the motions.  I am scared how Henry is going to be because one moment he can be fine with people and the next moment, he can either be very withdrawn or to the point of becoming angry and being embarrassing as to what he says.   Even though people know the situation, no one really knows what it is like unless they live it on a daily basis.  The different mood swings, the point of being frightened, the crying as to why or what is happening….Even though people say they understand, they really can’t imagine how difficult it is just to keep a somewhat normal daily life.

Henry spends most of his day watching TV.  He is afraid to go outside without me because he is afraid of getting lost even though I have the Medic Alert for him.  He tells me he is happy being with the dog until I come home from work.  I don’t know if this is such a good idea and have tried even with the Doctor’s help but no accomplishments.

-Thank you Denise for opening up to me and for your very kind words.

My husband was diagnosed in February of this year with Early Onset Alzheimer’s at the age of 56.

He retired as an Alabama State Trooper in July 2010, due to what we were told after a hospital stay was stress and anxiety. He started being treated for stress in 2007. He began misplacing things all of the time. He always thought we were moving his keys, watch, wallet, you name it. He was a bomb technician, firearms instructor, Swat team specialist and also a contract employee for Homeland Defense as an instructor, in EOD and Haz-mat. He was very educated and was a highly respected law enforcement officer for over 33 years. He started having problems with money and numbers in 2010, which increased his stress levels. He was taken to the hospital, for what they thought was a heart attack and after a battery of tests, the doctor said it was stress and he needed to retire. So we did. He worked part time at a friend’s gun shop, only to become agitated on a daily basis. He had problems completing the background paperwork for gun purchases, also with making change, etc. We went to our family doctor several times in 2011 and in 2012 he had a brain scan done and he told us it was stress causing mild cognitive impairment. He scored 23 on the mini mental evaluation in his office. He changed his medication once again and told us to reduce stress as much as possible. There were so many times I just wanted to leave, but I loved him with all my heart and couldn’t do that to our children as well. It scares me the thought ever went through my mind. We have three sons all living at home. Our youngest is 13, our middle son will be 21 in January and just graduated the police academy and our oldest is 22 and is in his 4th year in college.

We went back again in August of 2012, he repeated the mini mental evaluation and he scored 21. Two weeks before our appointment for the neuropsychologist testing, we found out our insurance didn’t cover mental health, so our portion of the bill was $950.00, due at the time of the visit. We didn’t have the money, so I called and asked for a referral to a neurologist and we were able to get an appointment in a little over a week. When they started asking him they day, the month, year, who was governor, what county he was in, the list goes on and he couldn’t answer most of the questions. I was in a state of shock. They did an EEG and it showed slowed brain activity, they started him on Aricept and he referred us to UAB and we were able to see the Director of Neurology. He is the most amazing doctor I’ve ever met. He scored in the low teens in the mental evaluations. He ordered a PET scan, but our insurance wouldn’t cover it, so he had a SPECT scan done instead. The doctor said it was basically an older version of the PET scan. He called me the evening after the scan at home. We had been home about three hours and he told me John had Alzheimer’s. He said he was pretty sure that’s what it was, but wanted to scan to confirm everything. He said he could not drive any longer and told me to apply for social security disability benefits. He is in the moderate stage of Alzheimer’s and he is too far advanced for any of the clinical trials. I cried after speaking with the doctor. How do you tell someone this kind of news? I knew something was very wrong for a long time, but was misdiagnosed for several years. I never in a million years would have dreamed this would happen to us at such a young age. I am 45 and John is 57.  Your blog reminds me of the overwhelming stress, the grieving for what’s been lost and what is ahead in the future. Bringing home the groceries and not getting any help because he doesn’t pay attention that I’m carrying in six bags at once. I don’t have to tell you, because you are living it too.

– Thank you Kimberly. You speak for so many.

posted by Karen in Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (5)

Our BIG Christmas Gift this year.

OLYMPUS DIGITAL CAMERA

Meeting our newest family member, Duke, for the first time. Dec. 2013.

For the first time in my life I own a dog. A beautiful, smart, sweet, 5 month old bundle of joy. Hard to imagine that at 43 I have never had a dog. There are lots of reasons why ,starting from when I first asked for one around the age of 4.

Through the years I have owned cats (many), fish, parakeets, a turtle or two and hamsters (ok, the hamsters were Frances’). After I got my first apartment, within a couple of months I had a kitten. So, I have loved having a pet, just never a dog.

We have lots of friends with dogs. But I don’t coo and cuddle and show much interest in their dogs. It isn’t that I don’t like dogs, I actually do. But none of those dogs are mine. None of those dogs have a history with me. They aren’t there when I wake up in the morning or go to bed at night. They certainly aren’t sitting next to me making sweet dog sleep sighing noises as I type away on my computer.

The kids have been asking for a dog for years. As most kids do, they want everything: Cats, dogs, birds, fish, flying squirrels, rabbits. You name it, they have asked for it at some point. But the dog thing has been pretty consistent for many years. I could relate. I used to want one too when I was a kid. Something finally clicked this year. They are 9 and 12, so they are old enough to help with the care of the dog. They are full of energy. They don’t sit in front of the TV or computer for hours so they can be active with the dog. They both are good with animals and have demonstrated (somewhat) with the cats that they will help out. This year, a dog was top of the wish list at Christmas for them both. (I have since found out that was a planned act of collusion.)

When I finally made the decision to get a dog, everyone I told had the same reaction,”NO. Don’t do it. Are you crazy? You know how much work they are? You already have too much on your plate. You are too busy a family.”

Well, as I have mentioned before, I am hard headed.

Guess what? We got a dog. A Border Collie from a rescue organization. Getting this dog was more cumbersome than having a kid. Referrals, more referrals, a home visit, follow ups required. If only every parent had to go through this….

Wanna know what changed my mind? Frances.

Several months ago she said something that honed in on my weak spot.

“Mom, you know if we don’t get a dog soon, it will be too late. I am almost 13 and in a few years I won’t want one anymore and I will have spent my whole childhood without a dog.”

Bam. There you have it my friends.

So, I started warming up to the idea and REALLY thinking about the pros and cons. The pros won.

I did research and realized that the dog would not only be great for the kids as we deal with Jim, but the dog will be great for Jim as well.

Whenever you ask Jim what his favorite animal is, his reply is always the same. A dog. He had a dog (Sasha) growing up and I have heard many, many stories ever since we met about Sasha. But when I would mention us getting a dog, he was always very adamant about not getting one. I am not sure why.

Now that we have Duke, he is very happy. Jim plays, pets, talks to and spends all day with our new family member. I asked him why he never wanted one when he is clearly so happy having a dog and his reply was, “because they are a lot of work and I didn’t think we could commit to that.”

Well, we have and it has been great. So far anyway. I don’t want to jinx ourselves. We were very fortunate that the foster mom taught Duke many things before he joined us.

I think I made the right decision. All of us have bonded with him. Brad has been having a hard time with the obvious decline Jim has shown in recent weeks and now that Duke is here, Brad is happy and focused on something else.

Frances sees Duke as someone to take care of and another reason to make some lists and to work on a project.

Jim has a companion and a buddy.

I have a family that is happy and relaxed and able to think about something other than Alzheimer’s. And I have fallen in love with him too. I miss him while I am away at work and worry that Jim is remembering to let him out or to put him in his crate. But it is a different worry than I am used to now. It is a worry that I have some control over. The obvious irony is not lost on me.

Yes, a dog is a lot of work. Yes, we are a busy family. Yes, they are expensive. Yes, it will be more responsibility for me. Yes, I now have to make sure Jim is cognitive and aware of something else during the day. Although we have had a few minor incidents, Jim has stepped up to the plate and I think this has been really good for him. It has been a rough holiday season and Duke is a very bright spot for us all.

The smiles, laughter, excitement, happiness and joy far outweigh any of the negatives that were thrown at me.

posted by Karen in Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (10)

Christmas Cards in the Mail yet?

Saint Nicholas, Alzheimer's Disease, holiday tradition

Frances and Brad with Saint Nicholas at Endview Plantation. We took them for years. Dec. 2008.

Tis the season for cheer. And lots of friends gathering round. This is the time to sing songs you have been singing all of your life. Now is the occasion to send out cards to everyone you now know and everyone you once knew. Yep, it is time for the Christmas card drudgery.

Ever since I moved out into this great big world on my own, I have sent out cards every year in December. Except for last year. And the year before. And the two years before that. Each year I would promise myself I was going to find the time and the energy and the wherewithal to write the accompanying letter and get a nice family photo copied 100 times and we would sit down and make our cards. Yes, you read that right. Make our cards. I am NOT a crafty person. I have talents but crafts is not one of them. But, when the kids were little we started a family tradition of sitting down together and making our cards. In my mind, that was going to help us bond and we would create a magical card each year, topping the previous years’ masterpiece and eventually we would have a collection to put on display each year.

Well, about the time we really began settling into this tradition, Jim started having some symptoms that something was wrong. Which is a delicate way of stating that we were having trouble with our marriage and I wasn’t feeling jolly, delightful or ready to spread cheer to all of our friends on the mailing list.

Dec. 2009

Dec. 2009

So the first year we missed our cards, I told myself we would make New Year’s cards. We had the paper, the stickers, the markers, and the whole shebang of supplies. And then the second and third year, I fooled myself again into believing we could still do this. We didn’t. I didn’t. There was no way I could wrap my head around doing it. I briefly thought of doing the simple photo card and being done with it, but that would break our tradition, admitting I was a failure as a Mom and as a future Martha Stewart, and I am a little hard headed. So, no cards were done for 4 years.

Now it is that time again. I haven’t made a card, but my very artsy daughter, Frances, has. She has made 3 cards and is determined to make it to 10. I ordered the photos. We have 3 cards addressed, stamped and ready to be mailed. I might even use some of her supplies and make a few when I find a spare moment or two. The letter? Not going to happen. What would I put in there? Oh, life is great. We are watching Jim progress with Alzheimer’s Disease and have no idea what our life will be like next year at this time. Merry Christmas.

Alzheimer's Disease, tradition, Saint Nicholas

Dec 2010

I must remind myself many times a day of how we never know what life holds for us. I must remind myself how down I get each year now at this time and how each year we end up having a magical, memory making holiday.

This year, I am struggling, but I do feel stronger and better than I did last year. I fight off my negative thoughts and my bitterness and my anger each moment I am awake. Sometimes I do a great job and other times I should be fired.

I miss Jim so much during Christmas time. I miss our discussions of what to get the kids and our families. One year we hired a babysitter, took all the toy catalogs we had gotten in the mail and sat at a restaurant pouring through them together coming up with ideas. I miss sitting next to our lit tree after the kids are in bed, just looking at the lights and sharing quiet time together. I miss feeling excited, wondering what neat idea he had thought of for me under the tree. I miss his help decorating, doing the cards, singing songs, watching movies and so much more. He still watches the movies and he still throws out a hum (actually lots of hums) during Christmas songs, but it isn’t the same. He is here, but he isn’t here.

We will carry on our traditions for as long as we can. We may start new ones. We may lose a few along the way. I am grateful we have each other. I love my family. I am so very, very grateful we are together as a family. I am grateful we have so much, when so many are in need. I am grateful it has been such a great year. I am grateful for all I have; yet I still feel so sad and so alone.

I miss Jim.

Saint Nicholas, Endview Plantation, Traditions, Alzheimer's Disease

Our final visit. Sad that this tradition has ended. Dec. 2011.

 

posted by Karen in Uncategorized,Younger Onset Alzheimer's Disease and have Comments (7)

The Happiest Season of ALL…

Christmas, Alzheimer's Disease. Frustrations

Jim and Frances, Christmas Eve, 2009.

Every once in a while I have a hard time finding the appropriate words to share with you. Oh, I have words forming in my mind; swirling and circulating, but they aren’t always appropriate and necessary to share. They are words that I try to push away: like sweeping wet dirt on rough concrete. The top layer moves, but you can still see the remnants after the broom passes.

I know the holidays are hard for Alzheimer’s families. I know this, yet I try to think that our holiday will be different. Not like others going through this same shitty cycle. Last year, as I was talking to a good friend, I was lamenting that I didn’t know if that would be our last “good” Christmas with Jim and that I needed to make it special and I didn’t know how he would be this year. She very sternly replied,” You don’t know what is going to happen. THIS may be the best Christmas ever and next year may be even better. You can’t sit around thinking these things because you just don’t know. You need to just enjoy this Christmas.”

Boy, was she right. Last year we had an awesome Christmas. We probably had the best one ever. It was relaxing, it was emotional, it was special. We spend every Christmas at my parents. Last year there had been a health scare between Thanksgiving and Christmas in my family and as a collective whole we ALL decided to scale back, not do as much and to enjoy each other. It was wonderful. It was exactly what my dear friend had told me it could be.

Last year Jim was having some trouble putting the greenery/lights up on our front porch. So, another awesome friend stopped by and put the decorations up for him. It was a simple gesture, but it saved Jim hours of grief and stress.

This year, I completely had forgotten and when I left for work on Monday asked Jim to put the greenery/lights up on the porch, as he has done for as long as we have been together. While I was sitting at a lunch meeting, Jim called. I answered and heard him crying.

I just can’t do it. I can’t put them up.

 Why? Why did I ask him to do this? Why do we have to decorate our house for Christmas? Why can’t I find the time to do everything? Why? Why? Why? I told him I was sorry, that I should have never asked him to do that and not to worry about it.

There really is this very fine, delicate line to walk. I have to give Jim tasks to do, yet I must make sure they are tasks he is able to do. Sometimes the “simplest” thing he did just a week ago is now something that seems foreign to him. Sometimes I forget he can’t do it. We spent years learning each other and setting our “marital chores” in place. You know what I am talking about. In every marriage there are the things one spouse does and other things the other spouse does. It is hard to take the expectations of them keeping up with their side of things off the table. On top of that, Jim is still aware of what he isn’t able to do and it is a very hard pill for him to swallow. Actually, he does a fantastic job, but I know it hurts him and it makes him sad. Sometimes when I don’t give him anything to do, he just seems to wander around our tiny house, lost in thought or trying to figure out what to do. I am not sure. But either way, he does better with a list of items he needs to get done.

He stood by as I strung the tree. He took 3 days to put the candles in our windows (no, we don’t have that big of a house). He watched Frances put the lights on the front bushes. He got confused when I asked him about wrapping paper.

Yes, I find it hard sometimes to write words that are appropriate to share with you. Not because I don’t have a lot to say. But because I am hurting. I am sad. I am depressed. I have a problem that I can’t fix. No one can. And why bitch and complain when there is no solution? Because it makes you feel better. For about 30 seconds. And then you feel bad. REALLY bad. Because you know it isn’t their fault. And then you start the cycle over. Feel Bad. Bitch. Feel ok. Feel Bad. Bitch. Feel bad about bitching.

It’s the happ, happiest season of all…….

 

Alzheimer's Disease, Younger Onset Alzheimer's Disease

Frances and Brad, Christmas Eve, 2006.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (5)