**This blog has been edited as the original was misleading. I realized that in it, I hurt my daughter Heather's feelings in that it appears I was furious because they keep their door locked. Quite the contrary. I am in complete agreement that they keep their doors locked as Gary has been found sleeping in their beds and being there when he shouldn't be. I was furious with the world and with Gary, not Heather and Xander. In fact, had the door not been locked, he most likely would have peed in their room as opposed to the hallway. So, I'm glad she let me know she was hurt....I had another good cry because of it. I love you, Heather.
Today started normally. Gary and I got were awakened by Xander, our 4 year old grandson squealing about something he considered delightful. I got up and went to the kitchen to make coffee and breakfast since we can no longer go to church.
My thoughts were on taking down the Christmas tree and doing some tax preparation. After I finished breakfast, I left Gary at the table while I went upstairs to go to the bathroom. I was gone about five minutes. As I walked out into our upstairs hallway, I witnessed Gary standing in the hallway next to a locked bathroom peeing.
After inquisition, screaming and lots of anger, it was determined that he had to go badly and rather than ask where the bathroom was, he attempted to follow me. Since Heather and Xander keep their doors locked, he stopped to try those (as he does frequently) before losing all hope. I was furious. Knowing that I had a problem, I moved him into the shower and began the clean up process.
I grabbed the carpet shampooer and started the clean up. In the middle of sucking the now clean water out of the carpet, the shampooer stopped working. It has been used since Diva was a puppy, so I guess it was to be expected.
I rushed Gary through a shower and did some quick research on a good buy on machines. Once dressed, we took off for Costco. Gary seemed VERY unclear all day. As we arrived at Costco, he was moving at a snails pace. He said he was not in pain, but just moving s-l-o-w-l-y.
To save time, I asked the door attendant where the carpet machines for sale are kept. She directed me to the right aisle and amid hundreds of crazy shoppers, I found them. They were on a shelf and very heavy. At this point, I was very overwhelmed by Gary, the reality of the situation and the crowds. I said to him 3 times, "Gary, please help me get this box down." I guess on the third time I was very forceful and loud. A couple standing nearby assessed the situation and by the look on the man's face, he knew Gary was not responding and jumped in to assist. The man told me to stand back while he moved the box and his wife held the buggy still. I started crying.
My emotions zoomed from thankful to embarrassed to dependent to pissed off. I thanked them for their help and they said, "Have a happy New Year!". God's servants are everywhere.
I did all I could to not lose it in the store. I choked back the tears. There was so much traffic in the store and in the parking lot, that I made Gary walk behind me and hang on to my jacket so I would know he was there. Once we reached the outer parking lot, I put the box in the car, took back the buggy and joined Gary in the car. I sobbed. He just sat there. Finally, he looked at me and asked why I was so upset. I told him all the reasons.....
We got home and I assembled the machine and shampooed the hallway and our bedroom. Well, why I was at it, I also did part of the stairs. The machine has some very cool attachments. Halfway down, I would have had to move to a downstairs electric outlet and realized I was tired. I've been fighting a head cold and headache for days and determined that I was overdoing. So, I put the new machine away. I put the old machine away....at least until I can put it out for garbage.
Oh yes. The Christmas tree also came down and was stored.
After fixing Tamales for dinner, I sat down to write this blog. Prior to that, I walked Gary to the bathroom and saw him in front of the toilet. As per usual, I said, "Close the door, put up the toilet seat and then flush." I closed the door behind him and walked away. A few minutes later, he walked out and went to the coat rack to put on his jacket.
I asked where he was going and he replied, "Nowhere." I asked why he was putting on a jacket and he replied, "Because I peed all over myself."
I looked up and sure enough, despite standing in front of the toilet, he didn't make it. What was he doing all that time? He has no recollection.
So, we have finished the second shower of the day and the second urine related load of laundry. The expletives were flying.
I knew I would know the right time to start using diapers. They have been preventative until now. Today, they are going to be part of life.
I don't know how long I can do this. There is no sobbing tonight as I am numb.
Showing posts with label public reaction to dementia. Show all posts
Showing posts with label public reaction to dementia. Show all posts
Sunday, January 3, 2016
Saturday, November 21, 2015
Public Embarrasment
Sometimes I feel punished. I know its a mindset but it is difficult to not get bitter. Anger is certainly an emotion that enters my heart near daily. Why do I have to change my patterns, errands and wishes because Gary has dementia? If I chose to get a "sitter" all the time, or impose on Heather more, I could have more freedom. He is not so far along that I feel that is right either. So, I'm stuck somewhere in the middle of this already in-between comparison to Hades.
Last Sunday, I took Gary to church. It is a loving group where we have worshipped before since moving to Anaheim. Because of Gary's constant repetition of many words he hears and due to his verbal processing (often loudly) of most thoughts, I am always on edge waiting for what jewel he may drop on humanity next. Sure enough, a few minutes into the Pastor's sermon, Gary stood up. I pulled on his jacket to get him to sit as I knew whatever he was processing was paragraphs behind the poor man's sermon. I managed to get him to sit down without too much noise or shuffle. Then, he started reading aloud the bulletin which I gave him to hopefully keep him quiet. I tried to quiet him with the ever-dependable "shhh". He merely repeated the noise several times growing louder with my frustration.
I could tell the folks in front of us were a little un-nerved. How to handle? When the Pastor asked for folks to stand up who were ready to commit their life to Christ, Gary took the opportunity once again to stand. Well, who am I to keep the man from re-giving his life to Jesus....even though he was probably hearing some other message.
The rest of the service was uncomfortable for me. Of course, the anger started. Is it lack of control that invokes the anger? Is it embarrassment? Yes.
Then today, he really needed a pedicure. I can't effectively take care of his feet so I choose to have him professionally soaked, massaged and clipped every so often. I haven't found the right person who completely understands his behavior, needs and quirks. Today, we came close. The lady doing his manicure (I just asked for a pedicure and he decided LOUDLY, that he too needed a manicure) was very sweet and spoke English in a tongue he could clearly understand. She told him that we were treating him special because his birthday was this month. He treated the entire audience within the salon's hearing range with his signature "Yeah, yeah, yeah!" and "That's more better than good."
The other discomfort for me is not knowing how loud he will be or what he might say. (for example, he told the woman she had nice breasts and asked if he could touch them). I apologized and told him his behavior was inappropriate and that he needed to stop and that certainly he could NOT touch her. She understood, laughed and said she understood. I watched her body language for several minutes and she really did seem to accept his mental disorder. There was a woman around my age who was there with her adult daughters. She sat next to him and talked to him while my procedure was being finished. She asked how long he had dementia and that she had a friend in my "situation". All I could say was that I was sorry for her and that I wish the disease on no one. I gave her the blog address for her to share. Perhaps it will help someone else. Perhaps it is a hell that they would better cope with if they don't know what is coming. I'm not sure that I want to see the future.
There seemed to be a sigh of relief when we left. All employees were tipped very well. I will have to consider whether I go back to the same salon or find a new one. Do they want our business?
So, one should be able to see why I am beginning to think that I can't take him anywhere. I guess I will have to start shelling out additional dollars for a sitter, even for routine errands.
I will have him from Wednesday afternoon until Monday of next week due to the Holiday. Heather and Xander are escaping for the weekend. Escaping. Yes, I said "escaping". Bless them both. They put up with so much.
Pray for us all. Sometimes being a part of a family and having committed to a relationship is hard. I will not let him down.
Last Sunday, I took Gary to church. It is a loving group where we have worshipped before since moving to Anaheim. Because of Gary's constant repetition of many words he hears and due to his verbal processing (often loudly) of most thoughts, I am always on edge waiting for what jewel he may drop on humanity next. Sure enough, a few minutes into the Pastor's sermon, Gary stood up. I pulled on his jacket to get him to sit as I knew whatever he was processing was paragraphs behind the poor man's sermon. I managed to get him to sit down without too much noise or shuffle. Then, he started reading aloud the bulletin which I gave him to hopefully keep him quiet. I tried to quiet him with the ever-dependable "shhh". He merely repeated the noise several times growing louder with my frustration.
I could tell the folks in front of us were a little un-nerved. How to handle? When the Pastor asked for folks to stand up who were ready to commit their life to Christ, Gary took the opportunity once again to stand. Well, who am I to keep the man from re-giving his life to Jesus....even though he was probably hearing some other message.
The rest of the service was uncomfortable for me. Of course, the anger started. Is it lack of control that invokes the anger? Is it embarrassment? Yes.
Then today, he really needed a pedicure. I can't effectively take care of his feet so I choose to have him professionally soaked, massaged and clipped every so often. I haven't found the right person who completely understands his behavior, needs and quirks. Today, we came close. The lady doing his manicure (I just asked for a pedicure and he decided LOUDLY, that he too needed a manicure) was very sweet and spoke English in a tongue he could clearly understand. She told him that we were treating him special because his birthday was this month. He treated the entire audience within the salon's hearing range with his signature "Yeah, yeah, yeah!" and "That's more better than good."
The other discomfort for me is not knowing how loud he will be or what he might say. (for example, he told the woman she had nice breasts and asked if he could touch them). I apologized and told him his behavior was inappropriate and that he needed to stop and that certainly he could NOT touch her. She understood, laughed and said she understood. I watched her body language for several minutes and she really did seem to accept his mental disorder. There was a woman around my age who was there with her adult daughters. She sat next to him and talked to him while my procedure was being finished. She asked how long he had dementia and that she had a friend in my "situation". All I could say was that I was sorry for her and that I wish the disease on no one. I gave her the blog address for her to share. Perhaps it will help someone else. Perhaps it is a hell that they would better cope with if they don't know what is coming. I'm not sure that I want to see the future.
There seemed to be a sigh of relief when we left. All employees were tipped very well. I will have to consider whether I go back to the same salon or find a new one. Do they want our business?
So, one should be able to see why I am beginning to think that I can't take him anywhere. I guess I will have to start shelling out additional dollars for a sitter, even for routine errands.
I will have him from Wednesday afternoon until Monday of next week due to the Holiday. Heather and Xander are escaping for the weekend. Escaping. Yes, I said "escaping". Bless them both. They put up with so much.
Pray for us all. Sometimes being a part of a family and having committed to a relationship is hard. I will not let him down.
Sunday, November 8, 2015
Words from my mouth on Sunday......
Some utterances from my lips on a Sunday....not necessarily in order and with no context to assist the reader in understanding the insanity of dementia. I will omit conversations with anyone other than Gary.
12:38 am "She said she was taking Xander to the Emergency room. He has an ear infection. Go back to sleep."
2:38 am "Honey, you are in the closet. Come out and go to the toilet. Gary, go to the toilet. You are in the closet.
Did you flush? I didn't hear you wash your hands. Okay, dry your hands and come back to bed."
7:20 am "Good morning. I'll be right back. I'm going downstairs to make coffee and get your pills. Cover up and stay warmy dormy."
The quotes from the rest of the day will remain timeless....
"Finish up your coffee, take off your clothes and get in the shower. No, take off your pajamas. Hand them to me, I'll put them in the drawer. Get in the shower. If its hot, turn it down a little. Then, turn it up to warmer.
Hold still while I shave you. Don't rinse the conditioner out of your hair. Rinse after I shave you. Yes, I will help you wash. Okay, rinse your hair and get out. Step on the rug and towel off. No, you may not use my towel. You have your own.
Now, brush your teeth and comb your hair. Your underwear, shirt and pants are on the bed. Lean against the bed to put on your underwear. That way you don't fall.
Okay. Here is the hairspray. Don't spray your hair and then comb it again...it will make it gooey and you'll look like Alfalfa. That is a fake drawer, not a real one. This is the deodorant drawer. You have already put on your deodorant.
Now, put on your clothes. Where are your glasses? No, Gary, not those shoes. You have to put on your clothes before your shoes and those are your slippers. Your church shoes are at the end of the bed. No, lets put them on the correct feet.
Oh Lord, wont you buy me a Mercedes Benz? Oh right, you did. Thanks, Lord.
Gary, I already put the granola in your yogurt, stop flipping the top over. I already did that. Gary, stop playing with the napkin and eat your food. I'm taking Diva out to poop. Stay here and finish your coffee.
Why did you come out here? Diva is just going poop. Yes, you may sit down.....lets relax a minute. Ok, lets go so we aren't late for church. Do you have to pee or poop? Ok, good. Lets go. You just said you didn't have to go....ok, go ahead.
Gary, are you done? Hurry up, we're late! Did you wash your hands? Gary, why are you doing that? Don't wipe your hands on your shirt. There is a towel here its right there. Dang it, now go upstairs and dry your shirt with the hairdryer. NOW! Oh hell, come on up. I'll do it. NOW!
What were you thinking? Oh right, you weren't. I'm sorry. I know you can't help it. That doesn't make it easy.
Okay, lets go. Get in the car. NO, not out the front door. Gary. Stop. Stop! Oh hell. Get in the passenger side. No, get in the front seat. Put on your seatbelt. Stop messing with your jacket and put on your seatbelt, please?
Stop reading signs. No, we are not turning right. The church is straight ahead on this road. Stop stomping your feet. Why do you do that? Yes, Jesus loves you. Don't wave to the people in the car. Put the window up. Stop locking the door. Stop unlocking the door.
Here we are. Now, we're late so try to walk fast. Hi, Ms. Dru, I really have to go to the bathroom. Can Gary stay with you? Thanks.
Ok honey, lets slip in the chair over there behind Pastor Jim. Stand up and sing. Ok, you can sit down. Are you tired? Stop fidgeting. Shhh. Shhh, the woman is praying. Shhhhh!!!
Amen. Lord, thank you. Help me. Help us.
Hey, I have an idea, lets go get something quick to eat and go see the new James Bond movie. How does Carl's Jr. sound?
Yes, it is a good burger. We are going to be late for the movie, so lets go to the store and then home and go to the 2:30 movie. Its the new James Bond movie that came out this weekend. Do you like James Bond movies? Good.
Stop putting your napkin in your mouth, that is disgusting.
Do you have to pee before we go to the store?
Take off your seatbelt and I'll come around and help you. Wait, that lady is getting out of her car. Gary, STOP! You almost hit that car door! Stop means DON"T MOVE. I've told you that a thousand times.
What did you do with my list? Why did you ball it up? OH geez, this isn't the list at all. What did you do with it? I know, you don't know. Now, I have to remember the list.
Coffee. No, I want beans not ground. Because we have a grinder. No, you can't have alcohol. Wine is alcohol. You have had your lifetime allocation. It mixes with your medicine. Come on honey.
Walk faster. You are holding up traffic. Come on this side. Watch your head. Put on your seatbelt. We are not going that way, we are going home.
Help me carry in the groceries. No, this way. To the kitchen. Go straight into the kitchen. thanks.
Now, lets go upstairs and get out the clothes that are too big for you. Because you can't wear them anymore and there was a bad fire at an apartment complex and they need men's clothes. Try this on. I know you like this one but your stomach sticks out. You have gained a lot of weight.
Besides, if you lose weight, God will replace them. Someone else needs them worse. There was a fire at an apartment complex and they need the clothes worse than you.
Carry this box downstairs. Nevermind, I'll do it.
Get your shoes on, its time to go to the movie. We are seeing the James Bond movie. Do you have to pee? I don't want you to have to go in the middle of a chase scene. The last three movies you did that. Go pee.
Well, that movie is full. I should have purchased the tickets online. I know better. Ok, we will wait on the next show...its only a half hour. No, we will get a small coke and you can sip it. I don't want you to have to pee during the movie. Oh yeah, and Gary, you have to be quiet during the movie. You repeat everything and you can't do that in the movie. Understand?
Here is some popcorn. Only a sip. Shhhh. Be quiet. Be quiet. Shhh. Be quiet. I don't know what he said, you were talking. Dammit. You really have to pee? Can you wait until this action is over? Ok, go now. That way, over those people. I am so sorry. Go, Gary, Go.
I can't believe you have to pee. Come on, hurry. Do you realize that I just can't take you anywhere anymore. I am 52. I am too young for this. This is not the life I want. No, that is the men's room. I will wait.
What took you so long? Did you wash your hands?
We can't go to the same seats... we'll just slip in seats on the end....in the front. I know this is too close, but we are not crawling back over those people. SHHHH. Be quiet. Sit still. Stop wiggling your legs. No, we can't kiss. Be quiet.
Shhh. Be quiet. Oh no, really? Again? Get up! Go. I can't believe you have to pee again. We ARE going back and I am GOING to see the end of this movie. Hurry up.
What took you so long? Let's go back to the theatre. Are you enjoying the movie? Its James Bond. I'm going to have to start getting a sitter. I'm missing out on too much life. God gave me you for a reason. Look for it, ADA.
That was the end. Let's go. Home. Put your seatbelt back on. Why did you take it off? Oh good, Lord.
This is our home. We live here now. I'll fix supper. Chicken.
Why did you put your spinach salad in the mayonnaise. Now, its wasted. You better eat it. Stop feeding Diva. She had her supper. Gary, stop feeding Diva. Why did you put your napkin in your drink and suck it? That is the most disgusting thing I've seen you do in a long time. Stop it.
Bring your plate in here. Let's put you in the chair. Want a blanket? The heat is on. Don't touch the remote. It is set on relax with heat.
No, Diva. NO more treats. Diva, stop. What Gary? Stop calling Heather, I am right here. What do you need? WHAT? No, we don't need to buy another car. We have two.
Its right down the hall. Turn the chair off. I'll help you. Its down the hall. Turn on the light, close the door behind you.
Wash your hands. Did you flush? No, I'm not going to bed yet. I'm watching Madam Secretary and writing a blog.
12:38 am "She said she was taking Xander to the Emergency room. He has an ear infection. Go back to sleep."
2:38 am "Honey, you are in the closet. Come out and go to the toilet. Gary, go to the toilet. You are in the closet.
Did you flush? I didn't hear you wash your hands. Okay, dry your hands and come back to bed."
7:20 am "Good morning. I'll be right back. I'm going downstairs to make coffee and get your pills. Cover up and stay warmy dormy."
The quotes from the rest of the day will remain timeless....
"Finish up your coffee, take off your clothes and get in the shower. No, take off your pajamas. Hand them to me, I'll put them in the drawer. Get in the shower. If its hot, turn it down a little. Then, turn it up to warmer.
Hold still while I shave you. Don't rinse the conditioner out of your hair. Rinse after I shave you. Yes, I will help you wash. Okay, rinse your hair and get out. Step on the rug and towel off. No, you may not use my towel. You have your own.
Now, brush your teeth and comb your hair. Your underwear, shirt and pants are on the bed. Lean against the bed to put on your underwear. That way you don't fall.
Okay. Here is the hairspray. Don't spray your hair and then comb it again...it will make it gooey and you'll look like Alfalfa. That is a fake drawer, not a real one. This is the deodorant drawer. You have already put on your deodorant.
Now, put on your clothes. Where are your glasses? No, Gary, not those shoes. You have to put on your clothes before your shoes and those are your slippers. Your church shoes are at the end of the bed. No, lets put them on the correct feet.
Oh Lord, wont you buy me a Mercedes Benz? Oh right, you did. Thanks, Lord.
Gary, I already put the granola in your yogurt, stop flipping the top over. I already did that. Gary, stop playing with the napkin and eat your food. I'm taking Diva out to poop. Stay here and finish your coffee.
Why did you come out here? Diva is just going poop. Yes, you may sit down.....lets relax a minute. Ok, lets go so we aren't late for church. Do you have to pee or poop? Ok, good. Lets go. You just said you didn't have to go....ok, go ahead.
Gary, are you done? Hurry up, we're late! Did you wash your hands? Gary, why are you doing that? Don't wipe your hands on your shirt. There is a towel here its right there. Dang it, now go upstairs and dry your shirt with the hairdryer. NOW! Oh hell, come on up. I'll do it. NOW!
What were you thinking? Oh right, you weren't. I'm sorry. I know you can't help it. That doesn't make it easy.
Okay, lets go. Get in the car. NO, not out the front door. Gary. Stop. Stop! Oh hell. Get in the passenger side. No, get in the front seat. Put on your seatbelt. Stop messing with your jacket and put on your seatbelt, please?
Stop reading signs. No, we are not turning right. The church is straight ahead on this road. Stop stomping your feet. Why do you do that? Yes, Jesus loves you. Don't wave to the people in the car. Put the window up. Stop locking the door. Stop unlocking the door.
Here we are. Now, we're late so try to walk fast. Hi, Ms. Dru, I really have to go to the bathroom. Can Gary stay with you? Thanks.
Ok honey, lets slip in the chair over there behind Pastor Jim. Stand up and sing. Ok, you can sit down. Are you tired? Stop fidgeting. Shhh. Shhh, the woman is praying. Shhhhh!!!
Amen. Lord, thank you. Help me. Help us.
Hey, I have an idea, lets go get something quick to eat and go see the new James Bond movie. How does Carl's Jr. sound?
Yes, it is a good burger. We are going to be late for the movie, so lets go to the store and then home and go to the 2:30 movie. Its the new James Bond movie that came out this weekend. Do you like James Bond movies? Good.
Stop putting your napkin in your mouth, that is disgusting.
Do you have to pee before we go to the store?
Take off your seatbelt and I'll come around and help you. Wait, that lady is getting out of her car. Gary, STOP! You almost hit that car door! Stop means DON"T MOVE. I've told you that a thousand times.
What did you do with my list? Why did you ball it up? OH geez, this isn't the list at all. What did you do with it? I know, you don't know. Now, I have to remember the list.
Coffee. No, I want beans not ground. Because we have a grinder. No, you can't have alcohol. Wine is alcohol. You have had your lifetime allocation. It mixes with your medicine. Come on honey.
Walk faster. You are holding up traffic. Come on this side. Watch your head. Put on your seatbelt. We are not going that way, we are going home.
Help me carry in the groceries. No, this way. To the kitchen. Go straight into the kitchen. thanks.
Now, lets go upstairs and get out the clothes that are too big for you. Because you can't wear them anymore and there was a bad fire at an apartment complex and they need men's clothes. Try this on. I know you like this one but your stomach sticks out. You have gained a lot of weight.
Besides, if you lose weight, God will replace them. Someone else needs them worse. There was a fire at an apartment complex and they need the clothes worse than you.
Carry this box downstairs. Nevermind, I'll do it.
Get your shoes on, its time to go to the movie. We are seeing the James Bond movie. Do you have to pee? I don't want you to have to go in the middle of a chase scene. The last three movies you did that. Go pee.
Well, that movie is full. I should have purchased the tickets online. I know better. Ok, we will wait on the next show...its only a half hour. No, we will get a small coke and you can sip it. I don't want you to have to pee during the movie. Oh yeah, and Gary, you have to be quiet during the movie. You repeat everything and you can't do that in the movie. Understand?
Here is some popcorn. Only a sip. Shhhh. Be quiet. Be quiet. Shhh. Be quiet. I don't know what he said, you were talking. Dammit. You really have to pee? Can you wait until this action is over? Ok, go now. That way, over those people. I am so sorry. Go, Gary, Go.
I can't believe you have to pee. Come on, hurry. Do you realize that I just can't take you anywhere anymore. I am 52. I am too young for this. This is not the life I want. No, that is the men's room. I will wait.
What took you so long? Did you wash your hands?
We can't go to the same seats... we'll just slip in seats on the end....in the front. I know this is too close, but we are not crawling back over those people. SHHHH. Be quiet. Sit still. Stop wiggling your legs. No, we can't kiss. Be quiet.
Shhh. Be quiet. Oh no, really? Again? Get up! Go. I can't believe you have to pee again. We ARE going back and I am GOING to see the end of this movie. Hurry up.
What took you so long? Let's go back to the theatre. Are you enjoying the movie? Its James Bond. I'm going to have to start getting a sitter. I'm missing out on too much life. God gave me you for a reason. Look for it, ADA.
That was the end. Let's go. Home. Put your seatbelt back on. Why did you take it off? Oh good, Lord.
This is our home. We live here now. I'll fix supper. Chicken.
Why did you put your spinach salad in the mayonnaise. Now, its wasted. You better eat it. Stop feeding Diva. She had her supper. Gary, stop feeding Diva. Why did you put your napkin in your drink and suck it? That is the most disgusting thing I've seen you do in a long time. Stop it.
Bring your plate in here. Let's put you in the chair. Want a blanket? The heat is on. Don't touch the remote. It is set on relax with heat.
No, Diva. NO more treats. Diva, stop. What Gary? Stop calling Heather, I am right here. What do you need? WHAT? No, we don't need to buy another car. We have two.
Its right down the hall. Turn the chair off. I'll help you. Its down the hall. Turn on the light, close the door behind you.
Wash your hands. Did you flush? No, I'm not going to bed yet. I'm watching Madam Secretary and writing a blog.
Saturday, October 10, 2015
A "more-better-than-good" Haircut
Getting Gary's haircut was something I was dreading today. Perhaps it was previous trips to the salon where he talked incessantly and the stylist did not understand. Or the time he told the stylist she had nice boobs because she was leaning over him to cut bangs. Well, today was different.
I chose to go to the same salon as last time since I remembered nothing negative and only some quiet Facebook time while I waited. We walked in and checked in using Gary's name. The same woman who cut his hair last time heard us and said, "Welcome back, Gary. My name is Gloria, do you remember me from last time?"
She remembered us and gave me a "you poor thing" look as she helped him in the chair and asked him if she could give him a more-better-than-good haircut. He answered with his signature "yeah, yeah, yeah!" She used his phrases "more-better-than-good" and "yeah, yeah, yeah!" multiple times throughout the haircut. She asked him what was most important to him and he answered, "my wife". She winked at me.
I asked her name again and made sure to implant her face firmly into our life as she is a keeper.
As we checked out, she looked at me and said, "you are doing very well." I thanked her and we left.
He looks pretty normal at first glance. That is what concerns me. If I don't keep him right beside me when leaving grocery stores, he often trails along behind, holds up traffic and smiles and waves at people as he goes by. My fear is some day a road-rage driver who doesn't understand will run him over with their vehicle. Hopefully, I can be vigilant and God will continue to watch over his safety.
Yesterday, his Adult Day care called to say he would be coming home in different clothes as he had a two-way accident. He stayed the rest of the day but came home in brand new jeans and someone's high school gym shirt. Apparently, they keep extra clothes around for such events.
However, where are his underwear, jeans and golf shirt from the morning? Hopefully they didn't just hand them to him when he left and didn't tell the driver what it was....if he left them in the van on the last stop of the weekend....and its 100 degrees outside....well, that won't be very pleasant. Is that a nice way to phrase it? That could be a very crappy morning for everyone on Monday!
I chose to go to the same salon as last time since I remembered nothing negative and only some quiet Facebook time while I waited. We walked in and checked in using Gary's name. The same woman who cut his hair last time heard us and said, "Welcome back, Gary. My name is Gloria, do you remember me from last time?"
She remembered us and gave me a "you poor thing" look as she helped him in the chair and asked him if she could give him a more-better-than-good haircut. He answered with his signature "yeah, yeah, yeah!" She used his phrases "more-better-than-good" and "yeah, yeah, yeah!" multiple times throughout the haircut. She asked him what was most important to him and he answered, "my wife". She winked at me.
I asked her name again and made sure to implant her face firmly into our life as she is a keeper.
As we checked out, she looked at me and said, "you are doing very well." I thanked her and we left.
He looks pretty normal at first glance. That is what concerns me. If I don't keep him right beside me when leaving grocery stores, he often trails along behind, holds up traffic and smiles and waves at people as he goes by. My fear is some day a road-rage driver who doesn't understand will run him over with their vehicle. Hopefully, I can be vigilant and God will continue to watch over his safety.
Yesterday, his Adult Day care called to say he would be coming home in different clothes as he had a two-way accident. He stayed the rest of the day but came home in brand new jeans and someone's high school gym shirt. Apparently, they keep extra clothes around for such events.
However, where are his underwear, jeans and golf shirt from the morning? Hopefully they didn't just hand them to him when he left and didn't tell the driver what it was....if he left them in the van on the last stop of the weekend....and its 100 degrees outside....well, that won't be very pleasant. Is that a nice way to phrase it? That could be a very crappy morning for everyone on Monday!
Wednesday, April 1, 2015
Traveling with a person with Dementia
Going on vacation with someone with Dementia is a new experience. Gary and I went to Yosemite National Park last week for a few days to celebrate my birthday. It is a place we have visited many times and know locations, attractions, restaurants, etc. very well.
I did all the packing and planning for the adventure which would include renting a cabin, cooking two meals per day (cabin was remote and not near restaurants), hiking, walking and chilling out. In retrospect, I way over-packed but feel good about it as I never know when Gary will need layers.....too hot, too cold, etc.
For the 3.5 hour drive, he asked a gazillion questions. Where are we going?
- When will we get there?
- Why are you driving so fast?
- Why are you driving so slowly?
- Can I drive? Why not? (I explained at least 10 times that he no longer has a valid drivers license due to the dementia...he hates that answer and still does not accept it)
- When are we stopping for lunch?
- Why are we going to Yosemite?
We arrived at the cabin and he asked why we were not staying at the Ahwahnee hotel again. I explained that the rooms there were much more expensive than the $200 per night cabin we had rented. He dropped the subject as I asked him to assist me in bringing firewood into the cabin.
I unpacked while he familiarized himself with the cabin. Throughout the stay, he often had to ask the location of the bathroom in the two room cabin. One night, I awoke to have the cabin totally dark since he turned off all the lights. He could not find the light switch nor get back to the bed. I grumbled and complained and found the light to get him back to the bed. Of course, in that period of time, he had gotten very cold and spent the rest of the night complaining that he could not get warm enough. ARGH!!!!
On my birthday, we went to the Yosemite Valley and walked to the Lower Yosemite Falls. The drought conditions are horrible! We have been to this area of the valley so many times when the water was abundant. I commented on the horrible state of stress and by Gary's comments, I could tell, he did not recognize the change. He was just enjoying himself and the beauty that was there.
The next day, we hiked a very easy hike to the Mariposa Grove of Giant Sequioas! It was an easy .8 mile hike up and .8 back down to the bus. As always, we were dressed appropriately in hiking pants, layers and with a hiking stick. Four years ago, Gary and a group of friends hike up the back slope of Half Dome....a very grueling hike. THis year, I was in the lead and often times had to stop and wait on him. He seemed fearful of walking on the gravel and was afraid of falling. I slowed to a crawl and walked with him. He wanted to stop and talk to everyone on the trail.
While friendliness on the trail is normal, his version is over the top. Many of the visitors were not English speaking and he did not seem to recognize foreign accents and the fact that many did not understand his language nor his random, often non-sensical share-outs. I tried to explain but finally gave up and let him experience people looking at him as if he is crazy. Moving along seemed to solve the problem.
While hiking, I had to take inventory of my feelings regarding traveling with him in the future. Planning needs to be extensive or plan to not take him at all. He enjoys himself except for when something foreign to his brain happens and then he gets confused. Confusion leads to frustration and that to yelling or uncomfortable situations. I am not sure what to do for our 30th anniversary later this year......we have always done a spectacular trip on the "big" anniversaries. For example:
5th anniversary: big trip to Yosemite
10th anniversary: Windjammer cruise to the Carribean
15th anniversary: 11 day backpacking trip to Yosemite and renewed vows
20th anniversary: Windjammer Pirate Cruise and 10 days in St. Lucia
25th anniversary: Visited our home in Panama and toured Costa Rica for a week
30th anniversary??? At this point, who knows? I will keep you all posted as I ponder what might work.
Wednesday, March 4, 2015
Blog title change: Go to Your Corners and Come out Loving!
On Sunday, I was talking with a very dear woman whose husband is in an Assisted Living Facility with Alzheimers. They have been married for eons of time (not sure how many years) and are now living apart. She knows of Gary's dementia and sees him on a weekly basis. She quietly asked me, "How quickly is he progressing?" I answered that I am not sure how to answer the question compared to others but that he has declined but he seems manageable.
Today, I dropped him off at his CLUB and watched him stand at the door while an attendant came to let him in the locked environment. We had a great breakfast immediately before with lots of very lucid conversation. When he saw the woman, he lit up and went into "hug" mode. She came out, hugged him and motioned to me in the car to see if I was ok. I gave a thumbs up and he went into the building without ever looking back at me or acknowledging my presence.
Months ago that would have devastated me, but today, not so much. As I drove away I considered the conversation from last Sunday. People who know others with dementia ask "how is Gary?" but i realized today the real question is: How quickly is Gary declining? Everyone except me seems to know that he will never get better. I have been holding out hope and continuing with treatments, supplements, gimics with a private hope that someday he will get better. He will not get better. I need to face that fact. (Miracles excluded)
So, with that acceptance, I am now looking at behaviors that I have been participating in toward the end of "recovery". What can I stop doing? What angers me that shouldn't?
One of the steps to grieving is acceptance. Okay, check that one off. I accept the fact that my husband has dementia. Perhaps I should rename this blog from "Go To Your Corners and Come out Fighting" to "Go To Your Corners and Come out Loving". I will change it.
Perhaps this can assist us both in being calmer, less frustrated by expectations and overall, much happier. For all you prayer warriors, I always request that you pray for God's will. If its His will that today's acceptance is correct, I pray for more Loving. There is nothing to fight about in this situation. We will not win the battle.
Monday, January 19, 2015
"That's DISGUSTING!"
I have an ongoing issue with the behavior that results from my husband's dementia. I have little patience anymore and it is easily tested by me trying to control situations, prevent situations and to accept them when they still happen.
A few months back, I got a new Galaxy 5 telephone, so since my old Galaxy 3 was paid in full, I decided to give that phone to Gary. Somewhere along the way, he lost it. (you can check the archives of this blog if you really need to know when....) I used the insurance clause and spent the $100 deductible to have it replaced. Of course, when the first one was lost, so was the heavy duty "Otter" box and belt clip which housed it. So, shortly after replacing the phone, I realized that he still needed a belt clip as that was the only hope of him not losing it. I tried to save money by going to an accessory store and bought a middle of the road quality phone case and belt clip. (Lesson #1 of this adventure: don't try to save money by buying lesser quality goods.)
There have been several times since that trip to the cheapo store that the phone either flipped off his belt or just fell out of the case. Each time, he got very frustrated and had difficulty putting it back together. Last Sunday, on the way to see the IMAX version of "The Wizard of OZ", we stopped by the Old SPaghetti Factory to have lunch. The tile floored echoed as Gary sat down, the phone flipped off his waist, fell into four pieces, hit the floor and slid under two different couples' seats. THe waiter was very sweet to displace the two couples, move the table, move the bench seats and crawl under to retrieve the phone, cover, face plate and phone. Nothing was broken except for the embarrased souls called Gary and Ada. (see last blog entry for the OZ story)
The next day, after getting home from the CLUB, Gary attempted to call me several times and was complaining about the phone case again.....enough! I picked him up after work and headed to the SPRINT store to buy an indestructible OTTER BOX. On the way, I noticed that he was twirling a Grape Tootsie Pop around in his mouth. Not only did it smell very tasty but he was clanging it against his teeth. I asked him to stop and he said "I'm almost finished, relax." I thought no more of it at the time....Upon entering the store, I was laser focused on finding the phone cases while the store employees focused on the current customers. Gary went straight for the counter and interuppted the customer and worker to ask "Where is your trash can?" I was hearing this but thought nothing of it nor did I hear the rest of the conversation. Suddenly, I hear a shreiking and a "That is disgusting! That was in your mouth!"
Apparently, the clerk had answered the question and continued to say the only trash was in the back of the store in a large bin. Of course, Gary had finished the sucker, needed it to be tossed and had no qualms of asking the clerk to throw away his stick. OMG.
I walked over, grabbed him by the arm and explained that my husband has dementia and does not realize that his request is inappropriate. She instantly got it and became a nice sales person rather than the screaming "Valley Girl" that was disgusted moments before my explanation.
As she installed the Otter Box, I explained to Gary why his request was strange and not acceptable. I told him that the ladies at the CLUB and I often do things for him like toss out tissues, throw away objects that the general public just won't do. He seemed to understand.
Its been over a week and the phone has not left its case nor flipped off his belt. I should have bought the better product FIRST. It would have saved the poor phone person the close encounter with Gary's saliva!
Subscribe to:
Posts (Atom)