There is a Solution, I just haven’t found it yet

quote-about-figuring-things-out-and-moving-forwardI am exhausted. Mentally more than physically. The paperwork. The worry. The constant watch. The pure, unadulterated sadness. It is beyond overwhelming, it has changed my thought process, my soul and my inner-sanctum.

Watching a person die is horrible. Watching someone you love die is worse. Watching someone you love die a slow, tortuous death is beyond comprehensible. The guilt, the helplessness, the frustrations, the anger, the heartache, the wish for it all to end…. There are times I wish Jim was afflicted with something simple like cancer or heart disease. Not only would there be hope for him (and therefore us) but there would be more support and understanding from the world around us. And most importantly, HE would still be with us.

The endless paperwork, processes and lack of understanding from any system that can help us is completely unbelievable. If someone else in my situation was telling me this story, I would immediately think that there must be something they have missed, there must be a solution and obviously they haven’t tried hard enough. Well, I am here to tell you….I have tried.

Many readers have been so, so kind and reached out with suggestions and ideas and just thoughts of love. Thank you. I want to address the following to you:

Jim is retired Air Force. He is currently on Medicare because he has been on Social Security Disability for over 3 years. Once a person who has Tricare Health Insurance collects SSDI for over two years, they are automatically switched to Medicare. There is no option.

We have applied for Medicaid and have been told our case should be reviewed and a checklist should be sent out sometime during the first part of August. In the meantime, I just wait to find out what paperwork they will need. I have done some research and so far have gotten together most of what I think they will want….every bank account, every insurance account (they want to know if life insurance policies have a cash value), every investment account and our mortgage statement. It took me several days to get all of this together. Obviously the person(s) who decided this whole process have never in their life been in a predicament like we are currently facing. The application, the turning in of said application, the conversations on the phone, the gathering of information, the waiting for an answer….it is almost as if they are trying to just wear people down so they don’t finish the process so they don’t have to help them. How do others get through this??

The Veteran’s Administration. Oh boy. Where do I start? Should I tell you about the gentleman who was supposed to be helping us with our intake questionnaire but instead  WAS WATCHING COLLEGE BASKETBALL on his computer? Let’s be honest….it isn’t college basketball season which means it was a re-run which means he already knew who won anyway! Ok, I am moving on….Jim scored a 9 on his MMSE. Some of you who have travelled this road know that means he tested in the severe range. How unbelievably awful it was to sit, as the psychiatrist, who obviously has no Alzheimer’s Disease training or background, tried to ask Jim about his recent psychotic break. Then tried to carry on a conversation with him. Then asked him simple questions he could not answer, as I sat and watched, tears streaming down my face. Awful. Just awful. But at least the kind doctor said he would try to help us and would try to find a way to get Jim care. Again, his disability isn’t service related. He isn’t a Vietnam Vet or Gulf War Vet and he is not 65. We make over $26,000 a year. We are the middle class and we have nothing.

I sat at my desk the other day just dumbfounded by this whole mess. How am I expected to take care of Jim the way he deserves AND take care of two children the way they deserve? And somehow keep sane? Actually I am not sure I am at this point!  $6000 a month is the starting point for Memory Care. I sat and figured out where I went wrong…If we had saved $500 a month for each of the 18 years we have been married, we could cover 18 months of care. But, we didn’t. Please let this be a lesson for all of you. In other locales around the country, the costs are double. So start saving my friends.

Jim is still home. He is doing very well. He is happy in a childlike way. He now needs assistance with getting dressed, with shaving, showering and unfortunately parts of the bathroom routine. He takes it all in stride, not getting angry or embarrassed. Well, occasionally he snaps, “I can do it” and there have been a few moments the kids were scared because he seemed to be getting agitated and we are all on eggshells knowing what happened in Connecticut,  but overall he is easy going. I feel bad because he can’t figure out things to do without constant urging and help. He will sit and color at the table, but needs some direction. I, unfortunately, am at this point either making phone calls, trying to fill out paperwork or collect needed paperwork or fixing dinner, or starting a load of laundry or  trying to make sure I focus some attention on the kids to remind them I love them and I do want to hear about their day and their thoughts.

I have not left Jim alone since he returned and I now feel like a prisoner in my own home. He has returned to the wonderful respite program he attended before a couple of times a week but otherwise I have a shadow.  No quick runs to the store, or walks with friends or private conversations (he is always lurking within 10 feet of me) or ALONE time. None. On one hand, it is so sweet that he loves me and needs me so much he cannot possibly be out of sight of me. On the other hand, I am reminded of crazy stalker people and no one wants to feel as if they are constantly being watched and followed. It is creepy and unnerving.

I need $72,000+ a year on top of the income needed to take care of myself and the kids to now take care of Jim in a facility that will keep him safe, occupied, clean and happy. I hate that money has become such a huge issue in his care, in our story, in the eventual way he is taken care of. I believe all that should be at issue is making him feel safe and loved as he dies. Helping our children lose their father with the least amount of long term affects.  I struggle every day to figure out a solution. I am college educated, strong, smart and capable. There must be an answer and I must not be good enough to figure it out. After all, it just doesn’t make any sense to  not have a solution. Wonderful suggestions have been made: Go Fund Me pages, ads on my blog, selling the rights to our story, divorce, spending it all down and using our savings because I am young enough to build it back up again, in home care, re-doing our walk up attic for him and a caregiver, etc. How is it that so many others have dealt with this situation and yet we are still not able to call the right person, hear a few viable options and pick the one that best fits our family? Lots and lots of ideas have been floated our way and it’s just hard to know what the right answer is. I suppose I will never know what the right answer is. I will be forced to make the decision I can make and then I will keep moving forward because that is what we do. Humans keep moving forward. Through grief. Through pain. Through hard times and even through good times. We all move towards some unseen light and hope that along the way we are consistent with our happiness, our love and our contributions to others.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (17)

Battles Within

Enjoying Chincoteague Island and thankful for The Refuge Inn! Mother's Day 2015.

Enjoying Chincoteague Island and thankful for The Refuge Inn! Mother’s Day 2015.

It has been time for a new post for quite a while and I have written many in my mind. But sitting down to express my thoughts and feelings hasn’t been able to happen, for many reasons.

The first being I have been down. DOWN. As Jim declines, I decline. At some point,  I have to pull myself out of whatever hole I am in, even if he can’t. Without his help. Without his support or his belief in me. Without any communication about such daring escapades. Without the caring gestures and the simple pleasure of knowing he cares and is by my side. Mentally AND physically alone. It is only recently I have come to realize that dealing with one part, say the mental absence, was doable for a while. But then, there is the nonexistent physical connection as well. (Not just sex, but just a simple arm around my shoulders or hand placed at the small of my back as we enter a room….) The two combined equate the ending of our marriage as we knew it, as we lived it, as we dreamed it. Without either the physical or emotional connection to sustain us, what is left?

I feel as if I am a character in an old silent movie, teetering precariously on a steel beam high above the city, with my arms flailing, trying to keep balanced as my body contorts to whatever way my instability throws me while trying desperately to keep steady enough not to fall to my impending death, far, far, below. It is a symbol of the doom I seem to carry with me, even as I try so hard to focus on all the good that surrounds us daily. I mean, let’s be honest, I have much more on the positive side than the negative side happening in my life. It just seems that one, teeny, tiny negative somehow outweighs all of the positives and makes it beyond difficult to ignore or somehow unable to focus on the good stuff enough to keep myself happy and content.

I have been busy. Busy at very specific times. There have been times I have neglected even the most mundane tasks by deciding I couldn’t do anything besides roll over and go back to sleep after the kids went to school. NOT cool. AT ALL. So, after I would do this, once I was awake and functioning, I would go into some sort of immediate guilt trip of spending way too long in bed when I have many, many important things to get done. It has been a vicious cycle and an uphill battle. I am told not to beat myself up and to let myself have this time to heal and deal. It’s just not who I want to be. But only I can fight this battle. And I am winning. Not at the pace I would like, but still, I am winning. I am aware this is textbook depression. I have started seeing a therapist. I am aware this is normal. And it may be, but for me, it is not acceptable. Under any circumstances. See the sentence above about how many more positive things I have going for me.

As previously stated numerous times: JIM IS DECLINING. Yep. He isn’t getting better, but we knew this was our trajectory years ago. Years. You would think at some point this would all become old hat. Even so, our natural human nature is to always hope for something better to come down the pike. It is hard to keep this positive outlook and positive demeanor while understanding and acknowledging Jim is not getting better which means he is sliding closer and closer to things much worse.

Jim recently told me one of his last wishes (don’t worry, he isn’t THAT far along) was to go back to Chincoteague, VA. We used to go every year for Mother’s Day. Last year we missed it. So, this year, with the very kind help of The Refuge Inn, we were able to go and enjoy Mother’s Day weekend. Taking in the beautiful scenery of Chincoteague and Assateague Islands, Jim was like a little kid. Literally. We had such a memorable and fun time together as a family.

I had been worried if he would be able to do the customary bike ride, but it was no problem for him. I was worried if he would have trouble at the beach, but again, it was no trouble. Just the opposite. He was giddy, and happy and crashing into waves like he did years ago. It was such a wonderful site to behold.

Jim riding on Assateague Island, May 2015.

Jim riding on Assateague Island, May 2015.

We had a grand time. The kids enjoyed their dad and the island and just family down time. I enjoyed it all. And Jim fell into a memory that was familiar to him.

Back to reality. The night we returned: I was starting laundry and the kids were putting out the recycling and trash bins. Jim was confused. He wanted to figure out what was going on and what to help with. This is always such a treacherous place. I asked him to go upstairs and get his shower, but he knew we were all doing “chores” and things around the house. As I sorted the laundry, I heard the front door open and close. Not too long after, Frances came in and told me, “Dad just took off.”

Of course I was alarmed and worried and stopped what I was doing. She told me Brad had taken off after him. It was dark. I was immediately uncomfortable and worried. Frances and I started searching for them and calling out their names: loudly into the neighborhood. It seemed like ages, but in reality was probably only 5 minutes before she had located them. I was torn. Angry at him for doing this to his children and relieved to have found him. And sad. For many different reasons. We walked home in silence.

Later I asked him why he ran away like that. His answer was a simple and honest one: “I don’t want to be this person, I don’t want to not be able to do things and to keep getting worse and worse.” He had tried to run from the disease.

There was nothing else to discuss. I just sat with him and silently wondered why such a good man was being tormented over and over.

This whole life with Alzheimer’s Disease is a constant battle.

Battles with Medicare and finances.

Battles with emotions.

Battles with guilt and expectations.

Battles with loneliness.

Battles with internal desires.

Battles with commitments and timing.

Battles with anticipatory grief.

Battles with science and karma and helplessness.

I know I will be ok. I have to be, right? I have to for my kids. For my parents. For Jim. For my friends. For…me? Do I really care if I’m OK? At what costs will I make it through all of this and will I be able to look back and like the person I was and who I become? Will I still be a good Mom and a good friend? Will I continue to be a good caregiver to Jim (although some days I wonder if I am at my optimal and what he deserves).

Only time will tell. Not having been a patient person, I am learning to soak in the opportunities that come our way while recognizing it may take time before I can truly appreciate or understand the journey we have lived through.

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)

My Happy List

Mystery flowers left on our front porch last year......

Mystery flowers left on our front porch last year……

I started writing a piece a few weeks ago about how angry I was. I will still publish that piece, but right now, I am just not feeling it. I am feeling new and exciting things on the horizon. So, I started doing just the opposite. I started a list of what makes me happy. Wow! I was surprised at how many things, many of them simple, that really make me happy. I don’t mean just put a smile on my face. I mean the kind of happy you feel inside; the kind of happy that makes you love your life and like nothing can bring you down. The feeling that all is right in the world.

After the devastation in Oklahoma and other parts of the Midwest this past week, I thought it would be a much better idea to share something a little more on the sunny side.  As I was cleaning the bathrooms and kitchen floor this morning I thought of those that have no bathroom or kitchen floor to clean and how lucky I was, even if I wasn’t too happy about the actual task.

I would like to suggest you take a few moments and really think about what makes you happy. You might be surprised by your own list. Maybe you can use that list to make sure you integrate your HAPPY into your everyday life.

Things that make me HAPPY:

  • Hearing my kids laugh and carry on a conversation together. Especially when they don’t know I can hear them.

 

  • Hearing my 9 year old son rapping in the shower.

 

  • Hearing my 12 year old daughter belt out tunes in the shower.

 

  • Listening to the rain while sitting on a screened in porch or while lying in bed.

 

  • Smelling the earth after a rain.

 

  • Feeling the warm breeze off of the ocean and feeling the salt spray on my face.

 

  • Jogging in the rain.

 

  • Biking at night with a full moon, a slight breeze and clean air. Even happier is when I get to do it with a friend.

 

  • Hearing Jim tell me he loves me. And that I am beautiful. This used to happen everyday and I took it for granted.

 

  • Visiting with my parents and getting to know them as friends, not just as parents.

 

  • Listening to friends chit chat and just be. Normal talk.  Hanging with good friends can carry me through a really bad day.

 

  • Visiting a place I have never been before.

 

  • Making a difference to someone.  This blog has really helped me feel like I am accomplishing this on a daily basis. I aim to do more of this….

 

  • Helping someone to see something in a different perspective that changes their life. This sometimes happens after a good heart to heart.

 

  • Having a clean house. Well, I can’t say this happens often, which might be the reason it makes me so happy.

 

  • Not having to decide what is for dinner. Or what we are watching on TV. Or what we are doing. Or, well you get the idea.

 

  • Not needing to get up first thing in the morning and having the kids come into bed and snuggle with me. LOVE.

 

  • Having a great, candid, open conversation with my kids about their life and who they are as a person. These don’t happen enough.

 

  • Seeing my children happy.

 

  • Seeing my husband happy.

 

  • Enjoying the sunshine after a cloudy, rainy, snowy, cold day.

 

  • Helping a perfect stranger and then not needing to tell anyone about it.

 

  • Reading a really good book that I just can’t put down and realizing I haven’t forgotten to fix dinner or take the kids to practice.

 

  • Realizing that I matter to others and accepting their love and care. This is an ongoing process for me. It is harder than you think.

 

  • Hanging with just Jim; watching a good movie and enjoying together time. These don’t happen often enough.

 

  • Watching my kids become their own person. This also would fall under the proud category.

 

  • Helping a friend with a problem and believing I contributed  in some small way.

 

  • Jogging or walking the Noland Trail. I am very happy as long as I don’t see a snake, then there is no happy.

 

  • Reconnecting with an old friend and realizing they have missed me too.

 

  • Organizing my chaotic house. This is a process that has never been done. But it will make me happy when and if it ever happens. In my mind it is doing to happen almost every day.

 

  • Having a husband that shares my hopes and dreams for our children and our future. Although Alzheimer’s Disease has taken a lot of this away from us, I know that I have a partner in Jim that supports my efforts and our children’s efforts.

 

  • Giving a bouquet of homegrown flowers to a friend or teacher. I love flowers. But not the silk ones.

 

  • Riding in the car (ok, van) with a great song on the radio that I know the words to and belting it out. Even better with the windows down and the sun shining. I refrain from this often since I drive a lot with fellow drivers in close proximity. 

 

  • Listening to the birds chirp and chatter. 

 

  • Getting through a list of things to do: I don’t know if it makes me happy or feel accomplished, but either way, it is on this list.

 

  • Becoming enthralled by a great song and playing it over and over until I learn all the words.

 

  • Feeling safe in Jim’s arms. 

 

 

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)

Two down….

 

Bike ride break overlooking the wild ponies. May 2013.

Bike ride break overlooking the wild ponies. May 2013.

We can mark #5 off  Jim’s bucket list. This past weekend we drove to Chincoteague and spent the night in one of our favorite places. We were able to get some bike rides in between the rain showers; even making it over to the beach.  We did skip our usual picnic lunch there this time due to the wind and chill in the air.

Yes, another bucket list item is done. I am trying to be happy about it, but just having to do the bucket list in the first place just really sucks.

We started going to Chincoteague every Mother’s Day when Brad was just a year old. Last year we missed going due to financial constraints and scheduling. This year Jim added it to his bucket list so we went the weekend after Mother’s Day.

What a great time we had just hanging out as a family. Seeing nature (we were able to see 3 elusive Delmarva Bushy Tail Squirrels in one ride), seeing the ponies, eating some great food and of course piddling through the stores.

A wonderful family owned inn.

A wonderful family owned inn.

For the past 6 times we have visited Chincoteague, we have stayed at the Refuge Inn. Love this place. Indoor pool, close to Assateague National Wildlife Refuge, great breakfast (free), awesome gift shop (knocked out some teachers’ gifts) and a corral of Chincoteague ponies on the property. We could see them from our room. They were kind enough to give us our bike rentals free!  Talk about awesome! Thank you Refuge Inn for helping our family make great memories again.

My second favorite store.

My second most favorite store in town.

Right across from the delicious bakery on Main Street is a really cute store that has lots of glass items and really unique stuff. We love browsing in this shop. The owners are really nice and usually remember us. A few years back I bought one of my favorite past purchases; a glass seahorse. I loved this seahorse. Every time I looked at it hanging over my kitchen sink it reminded me of our times in Chincoteague and it just gave me a nice fuzzy feeling. About 8 months ago, I was doing the dishes and realized the seahorse was gone. I asked Jim and he informed me he had broken it. I am not a materialistic person, but I was really upset this seahorse had been broken and no one had even thought to tell me. (actually this has happened quite a few times) It was something that has really been one of those things that bothers me more than it should. In the whole scheme of life and the whole scheme of my life, that glass seahorse was really not very important. But it was something that was special to me.

My new seahorse to go with my new normal.

My new seahorse to go with my new normal.

We made sure to make a beeline for the store and found the glass seahorses. They didn’t have the same exact one (they are handmade) but I found another that was just as nice.

It is back over my kitchen sink. I have faith that this one will last. The only problem is now when I look at this one, it reminds me of the other one and how upset I was and how I shouldn’t have been upset with Jim.

Why on God’s green earth can’t I just let it go? I have a NEW one. For all the tea in China, you would think that I could be happy with a perfectly good new one without trying to bring all that baggage from the broken one into the picture over and over.  I see this and realize I have to LET IT GO!!! Let it go and accept my new seahorse. Maybe I can convert it from being a reminder of  getting upset with Jim when I shouldn’t have, to a reminder of how special my life is and how I need to just let some things go.

Yes, I am sometimes human. I am not perfect. I expect too much of myself. I call this blog Confessions of an Alzheimer’s Wife for a reason. Because these thoughts, feelings and secrets are confessions to educate those of you NOT going through this less than desirable path of Alzheimer’s. And for those of you that are traveling this bumpy road, I write so you will understand you are not alone. You have many others that are thinking the same things as you, even though you aren’t allowed to say them out loud. Ok, maybe you can say them in your support group. I hope you are going to a support group and I hope you say those things out loud that you keep inside on a nightly basis. It feels good to let it out sometimes.

My most favorite store!

My most favorite store!

I love my life 90% of the time. I think that is pretty damn good. I have fantastic kids, I have a husband that is really amazing in the face of some pretty shitty circumstances. I mean, I got to go with these amazing people I share my life with,  that I adore, to a magical place that holds tremendous memories for us.

We are better off  than many other people. That is something to smile and be happy about. We are together. Our kids love us and each other and are happy. We have a lot to be thankful for and a lot to embrace and be joyous about.

Sometimes it is hard to see these things. We sometimes have to search really hard. When you look at what you have instead of what you don’t have or perhaps what you won’t have in the future, you can keep your happy with you.

Keep your happy. Let it shine, but don’t let it fly away.

Frances riding on Assateague.

Frances riding on Assateague.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (4)

Inconsistencies Abound

 

On top of the Assateague Lighthouse, 2010

On top of the Assateague Lighthouse, 2010

Tonight I asked Jim how many years we have been married. At first he said he didn’t know, then answered, “13”.

“No. Guess again.”

“I don’t know.”

“What year were we married?”

“1997.”

“What year is it?”

“2013.”

“So, how many years is that?”

“I don’t know.”

“Ok. 97 – 2007 is how many?”

“10”

“How many from 2007 – 2013?”

“6”

“So, how many would that be?”

“I don’t know. I don’t remember.”

“It was 10. So how much would 10 plus 6 be?”

“16”

“Yep, you are right. We have been married 16 years.”

So goes a conversation with someone in the earliest of stages of Alzheimer’s Disease. Unless you live with someone day in and day out, you really could not comprehend the frustration at the inconsistencies.  Jim normally is a math wizard, and I feel compelled to try to keep his mind active.  Letting him know that he can still figure things out is important, hence the above conversation.

This morning Jim had to go give blood for some tests. We talked many times yesterday about this for a variety of reasons. I told him to put out his sheet with the tests listed and the prescription. As usual, about 6:30 a.m. this morning he got up and went downstairs to start his day. I could hear him. I was just about to hop in the shower when I remembered he was supposed to be fasting. Oh snap! (ok, I might have said something a little stronger than that, but for the sake of your eyes, I am refraining from putting the exact words used) I quickly ran downstairs to ask him if he had eaten anything.

“No, just a peanut butter pretzel.”

“Jim, you were supposed to be fasting.”

Ughhh. Another one of those moments…..anyone could have forgotten.  My “old Jim” probably wouldn’t have. BUT, I need to accept the “new Jim”. On top of that, I felt immense guilt that last night I hadn’t put out a note or two to remind him. I should have. I meant to. I didn’t. I was tired and I went walking with a friend and failed to be one step ahead. I forgot.

Luckily, Jim called the lab. They let him know he could come in this afternoon if he didn’t eat anything all day. So that is what he did. He must have been starving, but he didn’t complain and just kept on keeping on.

I love that man. He is such a good person and such an easy going guy. (Please be sure to remind me of this at a future date when I am having a hard time recalling this fact!)

We are moving on down on the bucket list and will be headed to Chincoteague tomorrow after Brad’s baseball game. We won’t be there too long, but hopefully long enough to get in a bike ride or two, visit some of the shops and bakery and relax as a family with no agenda in mind. I am really looking forward to getting away with the kids and Jim to a place that is sacred to us.  I am REALLY hoping I get a chance to visit one of my favorite all time stores; The Coffee Shop.

Riding bikes on Assateague 2009

Riding bikes on Assateague 2009

I have come to realize that these overnight trips take a lot more forethought and planning. I will need to go through not only my stuff, but Jim’s as well. Frances and Brad pack their own bags, with me just going over verbally what they should have in there.  I will also have to make sure we have the bug spray, sunscreen,snacks, money for the toll, beach towels, bike helmets and the camera and well, you get the idea.

I am sure for so many people, this is standard for each trip. But I have come to realize that I cannot just tell each family member to do something, I must go behind them and make sure it is done.  When you work full time and have a million things going on in your head, this is actually much more difficult than it sounds. Especially when you have gotten used to having a spouse that spoils you by being on top of these types of things. There is a slim chance he will be on top of things and be able to help load up the car. He might remember to put ice in the cooler instead of just the items that are supposed to stay cold.  He might be able to help load the items in the van in a manner he taught me when we were packing up for our drive across country after we were married. Then again, he might not.

Yes, the inconsistencies get you. You never know what each day will bring.

We had a our support group meeting this week. What a wonderful group of people. All of us seem to be at about the same point in this journey. Jim arrived before I did. He filled them in a little and told them what a good time we had in Boston and at the ball game.  He also told them the Red Sox won the game. When they told me this after we were split into our separate groups, it was another one of those punches to the gut. I just wasn’t expecting it. I almost started crying. I was able to hold it together because they were so supportive and could see the immediate disbelief and they completely understood the look I must have had on my face.

Yet, today we were talking to someone and Jim let them know that the Red Sox had lost the game. How does this disease work? One day they know something and the next they don’t and then the next day they know again?

Inconsistencies happen. Life happens.  It will be ok and we will be ok.

Lookout Chincoteague, here we come!

Brad on a beach in Assateague, 2011.

Brad on a beach in Assateague, 2011.

 

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