Husband's last camping trip

Husband's last camping trip

Saturday, July 30, 2011


Been some time. Haven't had much to say, even though it's been a rough week. There are so many issues going on right now, all pertaining to this horrid disease.

I had thoughts of going back to work also. I even went so far as to register and apply with the City of Albuquerque and with UNM Hospital. The whole time though, something inside was screaming at me, "No". It would be nice to have a little more money to live on. We get enough money to pay the bills and I'm thankful for that, but for the rest of the month, there's next to nothing. So, I sit at home, waiting for the next 3rd of the month to roll around. That's hard. Don't want a ton of money, just a little more would be nice, just in case. Oh well.

I have been depressed alot lately. Can't seem to shake it. Worrying about everything, loss of life, finances, decisions. Ugh.

I made a decision to other day to join a Support Group. I had been given the name of a lady who founded this group and had her number for about 3 weeks. Never called her. But, on Thursday, something told me to call so, I did. One of the best decisions I have made. Didn't know what to say at first, just mumbled a few words, and like God Himself spoke, this woman started to speak. "You don't have to say anything, I'm here to help you, I know what you are going through, been there". With that, I felt like I had found an old long lost friend. Told her I had her number for a few weeks, but never felt inclined to call until that day. She laughed and said she had been in Colorado Springs all month, so I wouldn't of gotten her anyway. Funny how God works. She had just got back into town the day before. Funny, but not so funny when you think about it. God knew when I should call, not me.

Turns out she knows all of husbands' Drs at UNM. Only she is on first name basis with them. She is going to use her power to get husband in to see a Dr we saw last year. He runs the Dementia Clinic at UNM, also does Clinical Research at the VA Hospital. Her husband was a patient with this Dr. He died too. Dementia. At age 54.

This group meets on the 1st Sunday of each month. She wants to meet me beforehand, so, we will be having coffee at a Starbucks this coming Tuesday. So looking forward to it.

In the meantime, she has given me advice on how to deal. I had mentioned that I may have to go back to work. She is not keen on this, as she said it would be dangerous to leave husband alone. I know, I said, but need a little more money to live on. So, we will have to see about that.

Am looking forward to this week. Joining this group I feel, will make a difference, I feel it in my heart. I feel as if a door has been opened, a new beginning, a new understanding on this horrid disease, a chance to meet others in similiar situations and someone who will help the survivors of a terminally ill spouse.

God spoke, "There's Hope".

Saturday, July 23, 2011

MY Weekend - How's Your's?

This morning started out good. I slept a little later. Felt good to get a little more sleep. Have been going to bed rather late, then, waking up early, around 5:30 or 6.

Like I say, the morning started out good. But, the whole time, I was holding my breath, because I know when the bomb is about to go off. And it did.

Just as sat down to get on my laptop, husband started in on his truck. The truck is at our friends shop, we had it towed 2 weeks ago. I told Sean that it would be a few months before I could afford to fix it, he was fine with that. Turns out it is not the transmission, it's the clutch. The cost will be over $400. I do not have that kind of money to "just fix it". And Sean being Sean, and, knowing our situation, understands, said it could sit there for as long as we needed it to.

Now, try to get your husband who has Dementia, cannot walk properly anymore, can't remember what day it is, can't retain ANYTHING anymore, to understand this and you have a disaster. He does not understand the concept of money anymore, thinks I have thousands of dollars in the bank (oh, I wish), thinks I'm holding back because I don't want him to drive anymore, (per Doctors orders, but, he's right there), and I come away shaking for the rest of the day.

I hate it. I only want the best for him, yes, but I do not have the extra money to fix this damn truck. Also, the Dr told him not to drive anymore, but he will not go by the Dr's orders. He takes his medicine, as prescribed, is on top of that, but, to not drive? No, he says he refuses to stop driving.

I realize it's a hard blow to him, but, I am at a loss as to what to do. When mornings like this happen, I want to just leave. Go somewhere quiet, no one to talk to and reflect on my situation. It may be wrong, but I want to get as far away from him as possible. Don't judge me folks, walk a mile in my shoes.

So, here I sit, shaking, trying to update, and husband "pouting" in the bedroom, forgetting that I cannot afford to fix his truck for a few months.

Nice start to the weekend. Great.

Thursday, July 21, 2011

Catch up

Been awhile. Not had much to say. Seems like every day is the same. Husband continues to decline, I prety much do the same thing, everyday.

My Jack has joined the Air Force!!! Yep, he did it. Tish & the kids are still here visiting, then on Tuesday, her hubby, Jace flew in. He had been spending alot of time with them, and, told them of his plans. Jace, being the Army man that he is, took control and so far, Jack has taken the pre-test for the ASVAB (?), scored very high, higher than the average young man. Tomorrow he takes the real deal. I am so proud of him. At first, I was hurt that he didn't come to me first, but when Tish told me the reason, it broke my heart. He said he didn't want to tell me because he was afraid I would be upset about him leaving me all alone. On one hand, I am thrilled beyond belief, on the other hand, yes, that will leave me totally alone, no husband, no kids. Done, Finished. But, when you know this is the best thing for him, well, how can I not be happy for him?

The Air Force is the hardest branches of the Military to get into. I know he will pass the ASVAB tomorrow. Then, it's on to all the other stuff like, physical. He will do fine. During this coming school year, he will have monthly commands he will need to go to. Technically, once he passes everything, he will be in the Air Force, even being under the age of 18. I will have to sign for him to get in.

Wow, so many changes, so sudden, so soon. Alls well that ends well.

On the Dementia side, guess no news is good news. He continues to decline. Jack and I see it more and more each day. Walking is becoming more stiff, more labored. Memory is poor to say the least. I went to my old boss's house for lunch yesterday. We had the best time. It felt so good to get away from the house even if it was for only a few hours. I told her I don't miss working, but I miss working for their company. We have a great friendship, love her twins, it was just all around a great time. I really need those "get aways" often. It makes it more bearable when I came home to reality.

So, today is just another regular day. Husband will follow me everywhere, I will do housework, start dinner in the slow cooker, and tell him 148 times what day it is, what we are having for dinner, remind him to wear shorts, it's summer, answer questions like I'm a weatherman and assure him he's fine. And we are off............................

Friday, July 15, 2011

Right before we left for Colorado, I took husband to get him some sandals. I have to be careful in buying him shoes, he needs support in his walking, so I just can't go buy him any shoes. They have to have alot of support. Not only is it difficult to find the right shoe, it's also expensive.

So, off we went. Now, husband has difficulty in making decisions, it's very hard for him to concentrate on one pair, let alone deciding between two pairs of shoes. I found two really good supporting sandals. Asked him to choose which one he liked better, after all, it's his feet. I could see the struggle in his face. Finally, he chose the pair I thought would best aid him.

Now, we come to this. Since buying him sandals, he wears shorts. Yesterday, I noticed just how skinny his legs have gotten. Then, as I was looking at his legs, I looked up at him sitting in his chair. He has become rather thin. His T shirt was hanging off his shoulders.

He does eat, but not as much as he used to. That man could put away some food. Not so anymore.

I know it's the disease, I knew this was coming. But when did all this weight loss happen? It seems to me like it happened overnight. One day he was at an OK weight, had lost weight, but was not skinny, next time I looked, his clothes are hanging off him.

It's happening. It really is. He is dying. I now can see it in his eyes. His eyes are beginning to sink into his head. His head even looks smaller. It's really happening, isn't it? Oh God.

Thursday, July 14, 2011

Too much time on my hands and too much money

The last few days have been rather boring. No news to report. Nothin'.

Oh wait, I do have some news. The day before we left for Colorado, I got a letter from the State of New Mexico. In it, they said that husband has been denied Medicaid. Surprise, surprise. I just chuckled, threw the letter in the trash and continued packing for our trip. The reason for the denial? We have TOO much money to live on. There was an 800 number on the letter. I wanted to call them and ask them just exactly where was all this extra money, I could certainly use it. They must know something I don't, so please tell me where it is. Oh well. Whatever. So much for the state, so much for The Land of Enchantment, as they like to say.

Where do I go from here? Don't know. After looking in Colorado, as much as I'd like to live there, I don't know. I'm going to just take a breather, let time happen, cause it will, you know. See where we go.

With this denial, we cannot follow Dr Q. We have to continue going to UNM Neurological Clinic. That's not bad, they are a great team, but, Dr Q was special. Need to make an appointment with one of the other Neurologists. We saw 4 other Dr's there, and liked all of them. Who knows? I sure don't.

This week I feel myself floundering. Feel like a fish out of water. I feel lost, have nothing to look forward to. I hate being in this state. Seems like everything is in limbo. Just hanging.

Next Tuesday, I am meeting my old boss for lunch. We have stayed in contact since I left last September. She is one great lady. Sometimes I wish the girl who replaced me would leave, then I could have my old job back. I loved working there. But, then I would have to take husband to Adult Day Care. Don't think he would go for that. At least I'd have more money to live on. Wishful thinking on my part. The girl who replaced me loves her job, but, Crystal told me she misses me more than anything. Looking forward to our lunch, she is so much fun to be around.

So, there you have it folks. Much ado about nothing. Today will be busy, need to start looking for all that money the state says I have.

Tuesday, July 12, 2011

It is what it is

As I've stated before, part of this disease is is being totally absorbed in oneself. When the "experts" say, "part", they should re-word that. In my experience with husband, "part" should be "whole".

I have always put others before me, must come from having 7 children, giving of oneself for the kids, husband and any others that have come to me. I'm not righteous, (I know, finding that hard to believe?), but, I do think of others, putting all aside for other people.

Time has come for me to be a little selfish. What do I want to do with the rest of my life? I have been thinking about that for the past week. My life is about to change drastically. I will no longer be married with a living spouse. I have choices as to where I would want to live. I can go wherever I want, well, almost, depending on how expensive it is. I will be able to do as I please. After Jack leaves home, it will be about me. I could get a part time job to keep me occupied if I so choose. I could get up at dawn without fear of waking up husband. I could choose to cook dinner or not. I could go to the movies at 10:00 PM if I wanted.

There is a whole new world opening up for me. Scared? Nope. Excited? I'd be lying if I said no. Sad? Of course. Someone has to die in order for me to be able to start over, a new life, a new challenge, a new me.
Would I change it if I could? Of course. I don't want to see my husband die. I don't want to see my son loose his father. I don't want to watch husband suffer like he is now. I don't want to see anyone suffer. But, I cannot change it. It is what it is. I have to accept it, continue doing what I do. And except it I have. I cannot sit here day in, day out, and feel sorry for myself. Never been one to do that. I do not question why him, why me, why us?

I knew in my heart 3 years ago that he was afflicted with this disease. I did my research. I knew when he was referred to the Neurological Clinic. I knew. Each test to rule out some other disease, I would tell Dr Q, no, that one will come out negative. It always did. Until, they would test for cognitive skills. I told Dr Q, yep, he'll fail those. He did, all of them. Every. Single. One. Of. Them.

So, you see, this isn't new to me. I knew all along. And, I was right. I have had this time to prepare. It didn't come as a shock. I knew.

Now, it's just a matter of time before he dies. And I have to go on living. And planning. It's not being selfish, it's called survival. The sun will continue to rise, life will go on. Other people will die, babies will be born. Cycle of life. I will cry, yes. I will mourn, yes. I will miss him, yes. I will hurt for my children, yes. I will hurt for his Dad, yes.

But, it is what it is.

Saturday, July 9, 2011

Waiting to Exhale

My going away party for Marie went great. Food was delicious, company was even better. Before we said goodbye, I warned Marie to not cry, "I mean it", I said. So, when the goodbye happened, she held on to me so tight, and I could feel her start to cry, so I started laughing, which got her laughing. It was great.

I hate goodbye's. I never know what to do, always get an uncomfortable, awkward feeling. Not that I don't feel, I do, but, I just never know what to do. It may come from my childhood, when I was told I was nothing but an afterbirth, I don't know. So, I made it light and funny.

She is on her way to a better life. I am so happy for her.

Husband gave me trouble yesterday morning. Reminded me of when the kids were little and I had so much to do, they would act out. He started acting out, so, I put my foot down. He pouted the rest of the day, but "behaved" himself for the BBQ.

Since we have been back from Colorado, I noticed he has started using the cane even in the house. He used to only use the cane when we went out, but now uses it all the time. Trouble is, he lays it down somewhere, forgets where he laid it down, and the search begins. I will be in the middle of folding laundry, he forgets where he put his cane, panics, comes to me, scared and out of breath, and I have to stop what I'm doing and help him find the cane. It's usually right by his chair in the living room where he always sits, but, he forgets that he sits there. He forgets so much now. It's pitiful.

People who have not seen him in awhile, saw him yesterday at the BBQ. They all came to me, saying things like, "My God, Susie", or, "He's so bad now". I know, I know, I would say.

Jack and I, on the other hand, accept it for what it is, just take care of the daily living stuff. Because we live with it, it's a "normal" for us that we accept what he has lost, go on, waiting, always waiting for what's to come next. And, each time there is a sudden decline, we inhale and exhale.

Friday, July 8, 2011

A Loss and a Goodbye

Where to begin. Um, let's see. This week has been OK, for the most part, aside from a few episodes, husband has seemed OK. On Wednesday, husband slept from 4 PM until 8 AM, thursday morning. I did get a little concerned, because it was a very deep sleep. He woke up and seemed very confused, could barely get out of bed. He was very quiet yesterday, just wanted to lay down and watch TV. He dozed off and on. By the time I went to bed, he was still awake, but slept the whole night. No sudden jerks, no halucinations last night. Need to be thankful for these kind of nights. If he sleeps good, I sleep good. If he doesn't, well, you know, I don't.

His walking is not so good. Jack and I both have noticed it just in the last few days. I know soon, he won't be able to walk at all. When you are first hit with a diagnosis such as this, you know that the "on down the road, he will no longer be able to walk" kind of thing, but when it actually happens, it kind of takes me by surprise. Even with his loss of memory, it still affects me when he has a lapse of memory, which is all the time now, by the way. I have to constantly remind him of things, people and events. His mind can no longer hold any kind of memory.

My daughter, Marie is moving to Texas tomorrow. Her Aunt, Uncle and her own Father drove from Texas yesterday to pack up the moving truck. I am happy for her, but, at the same time, will miss her, because, well, I love her....alot. I will miss her funny, funny outlook on life (alot like me in that respect), I will miss meeting her at Wal-Mart. This girl has been a Wal-Mart shopper for about 10 years. She loves Wal-Mart. I, on the other hand, detest Wal-Mart, not the prices, the people. But, my Marie has been going to the same Super Wal-Mart, and knows where EVERYTHING is in that store. She also knows when new people start working there. Will go as far as commenting to them, "Your're new here aren't you?" How funny. Anyway, off she goes to Texas, where she and her hubby have jobs waiting for them. They have already rented a home, a big, beautiful, 4 bedroom house, with washer/dryer, big backyard for the babies, it will be good for them. No more lugging clothes to the Laundromat, no more apartment living. But, those babies? Don't even want to think about it.

Tonight, I am having a big BBQ for her, hubby and the babies.

So, as tomorrow dawns, my Marie will be starting a new life and my husband will continue to loose his.

Wednesday, July 6, 2011

Home, again

We are back from our trip to Colorado. It was a very nice trip. It was not relaxing as I had anticipated. Husband was alot of work. He was confused, kept getting lost in Justin & Annes' house, (to his defense, it is a rather large house), asked me questions I couldn't answer and followed me everywhere. So, in answer to your questions, no, it wasn't a relaxing trip for me.

It was however, so good to see my Son. I am so proud of him and all that he has accomplished. He is a very successful Computer Engineer, bought his first home and happily married. What more could a Mother ask for?

We had a good talk about mine and Jacks' future. I know I've said before that Jack and I will move to Denver. However, after looking at the expense of living in Colorado, I may not be able to financially make it there. So, for now, I will just let time take care of itself, and I will know the way to go when the time is right. For now, I am content to wait. I don't want to just up and move, I want to find the right place for me to live, one that is comfortable, financially and mentally. So, here I am, not at a loss, just waiting.

It was good to talk with Justin about husband. My future, Jacks' future, finances. He told me he didn't realize just how bad off he really is. My neice, Kim came for the 4th for a BBQ. She had visited us last year, and told me how much of a change she saw in just a year. When she watched him attempt to walk, she looked at me and said, "Oh, Aunt Susie".

It's good to be back home.