Let the moving begin!

Took the day off yesterday and rested all day long. Boy, I needed that. Have done too much and my body was telling me to knock it off. Feel better this morning. Going to get keys to the new place this morning, and start moving in. Kristen has a friend who has a truck and he volunteered to move all the boxes over today. What a sweetie. Friday, Pat & Tyler will move the big fish tank, get that done so Saturday should go rather smooth. Crossing my fingers and praying for a smooth move.

Husband has continued to decline. I told him I was getting the keys today. As soon as I told him, I knew it wasn't sinking in; "the look" is constant now. Several times after telling him, he asked when we were getting the keys. Really had to hold my tongue. There are times I want to scream about repeating myself, knowing I can't makes it all the more frustrating. He can't help it. That's what makes it so hard on me. He doesn't remember asking me 1 hour before. All he knows anymore is the minute he's in it. Everything else is gone, wiped away like on a chalk board. No memory to speak of is left. Gone, finished, done.

Thank you Debby, for your sweet comment about home help. The more I thought about it, the more appealing it is to me. I can go grocery shopping, run errands, you name it. So, as soon as I get settled, I am going to request a nurse to come in during the day, to monitor, care for, and take notice of the seizure activity during the day. I'm not a nurse, and having a professional in the house will help me get answers to my questions. I believe Medicare will pay for it. Hope so as I have no extra money to pay for home care. It's funny how I fight these decisions, then all of a sudden it makes so much sense.

Husband got quite angry with me last night. He wants me to give him $100 on the 3rd so he can carry money around in his wallet. When I told him I could not do that, but, offered $20 he told me I was spending all HIS money. Well, I had to agree with him on that point. I do spend ALL the money. On rent, food, utilities, insurance, gas, you name it, I spend it. Of course, he has no concept of money anymore, so, you have to talk to him like he is a child, explaining. Does no good though. Once he gets this way, all you can do is ignore him and eventually he falls asleep.

During my research on this deadly disease, before diagnosis, I read somewhere that they do become obsessed with money. Guess we're at that stage now. Fun. What's next?

Husband had a rough night. "Visitors" were back. A lot of seizure activity, but somehow I managed to fall asleep anyway. One of these nights, when the "visitors" come, I am going to turn over and look to see who these "visitors" are. Man, if I see a mist or an image of someone, I may just freak out. Curious to see if they are real or it's just an hallucination on husband's part. They are real to him, so who knows?

OK, so, here we go, the start of the big move. Have it pretty well organized, just want it to go smoothly. In the meantime, I will try to keep husband calm, hoping he will behave today. Like moving with an unruly 2 yr old.

In the realm of things now, with Phase I being symptoms of Dementia, and Phase 7 being the end, with all that he has done lately, I'd say we are moving into Phase 6. How I know all these statistics surprises even me. But, when you live with it you just seem to know. I can have conversations with the top Neurologist here in the city, using terminology I never thought possible, with the Dr understanding me and vice versa.

Did I miss my calling?

A new home, a wheelchair and home help!!

Been a few days since I've posted. To say I've been busy is a real understatement. I also said I was going to post at night, well, that worked for one day, now, I'm back to posting in the early morning.

This moving without a man stinks. The work involved! I am beat. Of course I've got Kristen & Jack, they helped so much on Sat & Sun, by Sunday night, we all three started dropping like flies.

The new house is so pretty. It has skylights in the living room, kitchen and master bath. So bright. And the fireplace. It's a Kiva Style fireplace. Modern. The kitchen has been gutted and replaced with Oak cabinets, nice counter tops. Oh, I could go on and on. Just want to get the move over and start anew.

Husband has not been doing well. Wants to drive by the new house a few times each day. He also started to panic the other night. He came out of the bedroom, holding onto to the walls, as he came into the living room, he seemed out of breath. He told me I had to switch the utilities over to the new place. I told him it was already done. Went back to bed. Got up again, came dragging his feet back to the living room and told me that there was one thing important I needed to do. I asked what, he told me I had to do a change of address, and seemed so scared about that. Asked me did I know how to do that? Yes, I reassured him, I know how to do that. He had this fear in him.

I know what it was. He could never do that, he doesn't know how anymore, but, to him, well, no one knows how to do it. I have to reassure him several times each day, all has been done.

Finally got a call back from Dr A's office. They wanted to know how he was doing, so, I told them he is not doing well, has taken a sudden decline that is concerning to me. His nurse said she would pass along that info to Dr A, see what needs to be done. I asked her where I could purchase a wheelchair, she gave me several places to call. Will do that AFTER our move.

She asked how I was coping. Told her as best I can. She asked me if I would like a home nurse to come in and help me with husband. I said I would, but, not for awhile. Explained to her that we are moving, and need to get him settled, adjusted, then will visit that. She said she thinks it's time for home help. I wanted to cry out and say, "Not yet", but who am I fooling? It is time, I know.

I knew this day was coming, but, it seemed so far in the future. Now here it is, slapping me in the knees. I'm not able to do it alone anymore. I do need help. I don't like this part. When his mom got home help, it was only a matter of months before she passed. I'm comparing, I know, but it's all I have to go on. I have been dreading this. That and the fact I have to get him into a wheelchair now. It's all happening so fast now. Doesn't give me enough time to adjust, then, bam, time for wheelchair and home help. Enough!!!

Once we get moved and settled, I'll address these issues. Until then, it's all I can do to keep me balanced and thinking straight. I am so tired, but, have to keep my eye on the end result, moving. And to watch husband for any sudden changes. How did I get here?

I certainly don't like what I'm seeing in husband. It's hurtful and scary. He's going to die, I get that, but, jeez, why?

Onto the next phase in this horrific disease. All I want is for husband to be comfortable. To feel safe and secure. Funny, no one asked me if I wanted to do this. Never in a million years did I think the unthinkable would happen to us. Never!

This new house

Today was a busy one. Did a lot of packing and cleaning. Several people showed up to look at the house. I had to play hostess. Wasn't too bad though.

Patrick took husband to the shooting range yesterday. Husband took a bad fall while there. Poor Patrick. He was pretty shook up about it. He has never watched husband fall. Husband was OK, but a bit unsteady.

Husband has been quite unsteady for a few days now. Cannot seem to gain any balance. It's so hard watching him go downhill so suddenly. I've noticed yesterday and today, he stumbles even with the walker. His legs are almost completely gone. Just when I thought the walker would do for awhile, I am now thinking of getting him a wheel chair. Only, I don't have money for that. Will have to check with Medicare, maybe they can help me buy one?

While I was doing the packing, husband was sitting on the couch. I came out of the kitchen, into the living room and noticed husband slumped over, asleep. I woke him up, told him to lie flat on the couch. Occasionally, he would yell out in his sleep. He would call one of the dogs, I'd look and he'd be sound asleep. Then, he would have a conversation with I don't know who. He slept for about 4 hours. I had to wake him up, as people were coming to see the house. He seemed disorientated the rest of the afternoon.

Husband has asked me several times today what day it is. One time he thought it was Wednesday, the next time he thought it was Sunday, then Friday. Continually asks me what day are we moving. I get so tired of repeating myself.

Tonight I am sad. Sad that we are moving, sad that there are so many memories here in this house. The new house won't have the kind of memories we have here. The new house will have different, end of life memories. No more looking out into the backyard, remembering the BBQ's, family parties and watching the kids run with the dogs. No, this new house will not hold such memories. But, it will be better for me. Clean slate in the new place. I will always think of this house. The house that holds so much dear to my heart, but, also so much heartache.

Another adjustment. But, I am looking forward to a new place. It will be a good thing.

I believe!!

Took the day off yesterday. I have been thinking of doing nightly posts, that way, everything is still fresh in my mind. I don't sleep well anymore, because husband doesn't sleep well, and there are some mornings I come here so sleep deprived, it's hard to review the day before. Will try it out, see how it goes.

As far as husband is concerned, nothing new. Same issues. No changes to report as of this morning. Seizures continue. Not a lot left in the memory category. Same blank, haunting look. Same shuffle and dragging of the feet.

Happy to report though, since I put him on the walker, there have no more falls. He can get through the house easier. I think he has accepted the walker and the two have bonded. I was teasing him the other day as he was trying to get around the big dog. She would not budge. I told him I was going to get him a horn to attach to the handles of the walker and the next time ole' Bessie wouldn't move, just blow the horn. I got a chuckle out of him.

The dogs DO NOT like the walker. Once in awhile, the little one will bite the wheels. Bessie will go to the other side of the room when she sees the walker. My dogs, they are so funny.

I will be able to start moving in on Monday. The big move won't happen until next Saturday, but I can start taking boxes in, leaving, (hopefully) only the big stuff for Saturday. The high school boys at our church have volunteered to help load the truck next week. I now will have plenty of help. Wish the move was over with.

So, there you have it. My life, so far. Each day seems to melt into another. Each day looks the same as yesterday. No sudden changes with husband (I'll take it). It's just, well, life. As crappy as it is right now, I know in my heart God chose this for me and I feel blessed to walk this journey. It may be heartbreaking, gut wrenching and just plain not fair, but, God is there, with me, with husband.

I believe this and it's the only thing that gets me through the day anymore.

The New House

Not a whole lot to post today. Quiet around here the past few days. Waiting for 8 am to arrive so I can call Dr A. Anxious to talk with him.

Husband slept a lot yesterday. I kept checking on him, a few seizures here and there, nothing big. Either that, or, I am just getting used to seeing the seizures. He seemed in good spirits when awake.

When Jack got home from school, he spent some time with his dad. I could hear them talking and laughing. Was good to hear.

Anticipating the move a week from Saturday. So much still to be done here, but, I have a handle on it, just a lot of work. Want it done and over with. Excited to get into the new place though. I love the area where we are moving, know a lot of people over there. It's a quiet, gated community where everyone walks their dogs, knows each other and greets you when at the locked mail boxes or the pool.

The new house is smaller than this one. That's fine with me. There is only a very small back yard, easy to manage. The HOA takes care of all the front yards, has sprinkler system for the front, they mow your grass, weed, do it all. You are responsible for your back yard. No more weeding, raking or mowing. My kind of place. Yeah. Am looking forward to being back in the old neighborhood and a new house. Also looking forward to saving money.

Did my budget the other day. By moving into the new place, we will save money, not a whole lot, but every little bit helps. Being that I have not found a job, and don't know if I will, by moving and saving money, getting a job will be less stress for me. And, I'm all about less stress!!

Also, I just want a fresh start. There are no memories in the new place. This house has too many memories. Looking out my sliding door, I see the Patio husband built a few years back. When he was well. I see the flower garden with the wooden arbor he built. I see the pond he installed. Too much for me at times.

So, onward and forward. A new beginning for us. Jack will not live in the new house for long. He will leave for the Air Force in the Fall. Kristen will be getting her own place. It will be husband and I. The two of us. He will not be able to do anything in the new house. He will exist only in the new house. It will be different, yes, but, no memories to ponder about in my waking hours.

One and a half weeks to go. And we're off!!

Update

Quiet. I love the early mornings. It's my time. I like to reflect on what the previous days have been, what today will be and, what tomorrow will bring.

For the last two weeks, I have witnessed husband decline faster than before. I am so glad I insisted on him using the walker. My gosh, he just cannot walk without it. His legs, when he walks, do not leave the ground, he drags them along. Both legs are now very stiff. When getting into the car, he has to lift each leg in.

Seizure activity is on a regular basis, all day, all night now. Even with the strength of drugs he is on, morning and night, it does not stop them all together. Thankful for the drugs, imagine it would be worse without them. These drugs are what's keeping him alive right now. Otherwise, the seizures would stop his heart.

Memory continues to be a constant struggle for him. One minute, he knows what day it is, the next, he doesn't know where he is. That blank, haunting look in his eyes is constant now. He sees, yet, he doesn't see. When he looks at you, those once beautiful brown eyes are now a dull brown, and shows no recognition, even with me. He will have a conversation with you, but, it's all one sided. He will nod his head while you are talking, but I can tell it's not registering with him.

His greatest fear to date is the swallowing issue. His reflexes are shutting down, so, I have been cooking softer foods for him. Easier for him to chew and swallow. I have watched him eat. It's slow and deliberate. He has to concentrate on chewing, then, swallow.

I will call the Dr tomorrow. He wanted me to call him in 4 weeks to give him an update on husband. 4 weeks will be tomorrow. We are also waiting for the genetics testing results to come in. We've got 4 weeks down, 2-4 more weeks to go. I am anxious about the results. We all know what he has, but, because of the rarity of this disease, the Dr wants to pinpoint this deadly disease. Also, because I will not agree to Autopsy, the genetics test will tell the story. This waiting can be hard at times. I try not to think about it.

This is where we are at, today. Basically an update on husband's condition. I can sometimes surprise myself when I read back what I just typed. I have learned so much medical terminology the last 2 years. Why, some of those long words just roll off my tongue nowadays. Never thought I would be in this situation. Course, we always think it will happen to someone else, certainly not our family. Then, the unthinkable happens.

I liken this disease to being punched in the gut. Just when you think you've got a handle on the situation, you get punched again, and again.

I don't like this, no I don't.

Another day in the life

The packing continues. I just don't understand how one can have so much stuff and not see it on a daily basis? Even after TWO garage sales, I still have......stuff. Oy vey.

And, I have to throw this out there. Why is it, when you mention you are moving, people ask when, you tell them, thinking they will be offering up their services and they start making all kinds of excuses as to why they cannot help? I had this conversation with two people who shall remain nameless on Friday morning. All of a sudden, one was going to be out of town, the other said he could help until 11:00, but that is all. I actually found it so amusing. Here are two big strong, grown men, fumbling over their own words. Had to walk away chuckling.

Husband seemed OK yesterday. Pat took him for most of the day. Pat is having a very hard time with husband's disease. He got choked up yesterday morning. Just helping husband out the door, Pat looked at me and said, "Mom, this is awful." Yes, my son, I know.

Pat took husband to the shooting range. Husband used to go a lot. He said husband had a great time. Said he smiled and talked all day. It was good for husband to get out of the house. It was good for me to have husband gone for a day.

Later, when husband got home, he told me he had wet his pants. He looked scared, but, I just had him change his clothes and did not make a big deal about it. Easier that way. I told Pat to watch him to make sure he goes to the bathroom, because bodily functions are beginning to shut down. He did fine all day, but, once he got home, well, he couldn't hold it.

I am putting this job search on hold, for now. No one is calling anyway, but, I cannot care for husband, do a move, AND, look for a job. Too much. Plus, I am beginning to think that going back to work is not God's Will for me. I have this feeling. What would be nice is for me to obtain 2 or 3 housecleaning jobs each week. The little bit I could earn would help me make it through the month. Because we are moving back to the area where we lived before, I do know people in the area, so, maybe, just maybe?

This is where I am at today. Not a whole lot left to do now, but, sit and wait to move. So much is packed up. Kitchen needs to be done, but, that's easy. Need to do the master bedroom and closet, but, I am organized, so the closet will be cake.

Until tomorrow. Stay tuned.