Update on Pat's Condition

It's been so long since I wrote. I've been busier than the average person with Pat's condition quickly declining and my Dad still not up to par. I should have made time to write here.... because it is important to share this with other people going through the same thing. Knowledge is the KEY to surviving Alzheimer's.

Pat was getting so bad, her anxiety growing in to something unbearable for both Mark and I. The doctor had prescribed Ativan for this but we held off... at first. But it got so bad for her to go anywhere that we had to try something. We started giving them to her once in a while, just to calm her.

Before too long she started to be anxious all day long. Asking over and over to go somewhere and not making any sense. We thought it was the progression of the disease. So we called the doctor and he told us to double up on her anxiety so then we were giving her 6 pills a day. This made her act drunk though, slurring her words and having a hard time to walk. It scared us to see her decline so fast.

Talking to a friend one day, she asked what Pat was taking for her anxiety. Thank you God for this conversation! She told me that this drug can really mess you up. It goes in quick and leaves quick which puts a person on a roller coaster effect.

After speaking with Mark, and him recalling a friend that had taken too much of this same medicine and had the same result, I called the doctor. We changed the medicine to something more mild.

That same day, she improved. She was aware, able to feed herself, knew all her kids names, knew her name. She could walk, go to the bathroom on her own.

Now it is like 6 months ago. She is doing so good

We are in the process of getting a referral to a Geriatric Doctor, someone who specializes in the elderly, in hopes of regulating her medicine and improving her quality of life.

This experience has made us realize that she is in the right place. Because we know who she is and how she is, we were able to detect a problem. Someone who doesn't know her, might not realize it.

This has been the best Christmas ever! While I know it will continue to get worse, for now, it is wonderful to have Pat back with us, in the land of the living!

We All Want to Feel Beautiful - even a 78 year old with Alzheimer's

This week has been a little tough because Pat is fighting off a cold she got from her daughter's last weekend.  It's made it tough on all of us because she is worse than a little kid at times. She has just felt icky and tired.

I gave her her bath this morning, 3 days later than normal, because I know she hasn't felt up to it. Or maybe because I know how much harder it will be for me with her feeling this way. Either way, we prolonged it.

After her bath, I picked her hair for her. This is something I have started doing lately because she only pretends to lift her hair. If I don't do it, her hair is matted and she looks pathetic, for lack of a better word.

Anyway, today I picked out her hair and she pointed out that when she smiles the side of her face is all wrinkly. It occurred to me, in that instant, that just because you get older or have Alzheimer's, you don't stop caring about your appearance. You still want to look the best you can.

Starting today, I am going to take more time on lifting her hair, helping her with jewelry and clothese selections. It's not just about making sure she is cared for... provided for.

It's about holding on to her dignity.

Pat had a Birthday

Pat turned 78 a couple weeks ago and we had a great time! We had 2 of her friends, her son, my mother, and Mark, Summer, and I. We ate at her favorite restaraunt and sang happy birthday to her. I was emotional, as I watched her. It was just so good to see her happy and interacting instead of just existing.

We came home, let her eat more sweets (what everyone bought for her), set up her new puzzle, and continued to make the day hers. I bought a birthday card that said on the front, "You rock girl!" and she laughed about it everytime she looked at it. And at one point even said, "That's great Chris". Her tone reminded me of the old Pat, the good time loving Pat, not the worried all the time Pat.

The whole day was special for her. And by morning it was like it never happened. In fact, the whole day was spent reminding her where the cards came from. Eventually we just let the memories fade away. They were good while they lasted and reminding her only upsets her. She is upset that she forgets such big pieces of her life now.

But I think she still, for now, knows we love her very much.

Simple Things Aren't Always So Simple

Mark's daughter was with for half of her school vacation this week. To Mark and I, it is ordinary. To Pat, it changes her whole world.

When Summer first gets to our house after school, Mark and I usually go somewhere alone for an hour or so. She's almost 16 and all Pat really  needs is a companion. Plus, we NEED a break and Summer gets that. The whole time we are gone she questions Summer about where we are and why did we take her car without asking her. I told Summer, from now on, she needs to set up a puzzle for Pat to help distract her.

Her being here sends Pat in to another world. She starts her questions about where she lives and why can't she drive, and on and on. She adjusts quickly to Summer being with us though, and is back to her self by breakfast the next morning.

And then when Summer leaves, it creates confusion for her. I knew it would be worse this time because we had her longer. The night she left, Pat kept telling me something wasn't right. I just isn't right. She felt fine she said, but something was different. It must have been the lack of Summer, her teenage stuff scattered on the floor, and her bubbly personality that Pat missed. We did too!

To us, change in our lives is minor and we handle the simples things easily. For someone with Alzheimer's, sometimes even simple things aren't always so simple.

Recharging this Superbowl weekend with a Break from Alzheimer's

I just returned from a walk in the woods with Mark. It was chilly but the sun was gorgeous as we SLOWLY wandered along, not a care in the world. No need to hurry back to check on Pat... through the window to see if she's remained building her puzzle or gotten up for any reason. No having to come right inside when we got back.

Pat is at her daughter's house for the weekend and we are enjoying our time without responsibility. Dinner and up late last night. It's weird with no noise control, no schedule to keep, no meds to remember, no one to assist or answer. It seems weird to me anyway. My subconcience still has thought of her a dozen times only to realize she isn't with us. I feel like her mother.

The past month has been rough, yet still the same. She hasn't gotten much worse but the constant inconsistency of Alzheimer's is maddening. She likes corn, then she doesn't. She doesn't want anything to drinkwhen it's water because she doesn't want to go the bathroom but when I replace it with Crystal Light she drinks it right down. I tell her, "Time to take a bath".... She replies, "I don't feel good." How cold she must think I am when I authoritatively tell her she has to. She doesn't realize she says this every time I ask her to do something she doesn't like.

I cross the line with her all the time. Tell her lies, trick her and play games on a daily basis. And I feel bad for doing it, but that is the name of the game when caring for someone with Alzheimer's. Their rationality is gone and you need to keep them safe... so you learn to think for both of you and convince them to do what they need to do.

I respect Pat. I've known her for almost 10 years and have seen her go through some tough stages in her life. We have become pretty close to one another being together all the time. I can read what she is thinking/obsessing about just by her body language. And I can see how lost she is. Alzheimer's just stinks.

It requires so much energy to care for someone with Alzheimer's. It's emotional, physical and mental. We are happy to have the chance to power back up this weekend!

Alzheimer's Overload

My plan had been to write in this blog a few times a week, every week. I felt I could offer a lot of helpful insight to others dealing with Alzheimer's because of what I have gone through and continue to go through. But then I realized that I couldn't do it as much as I had hoped. I can not drown myself in Alzheimer's.

I live Alzheimer's every second of every day. The breaks I get are few and far between. I live for the hour a week Pat goes to the hairdresser. And when Mark's daughter is home with us, it feels nice to take a walk outside and not have to rush back to check on Pat. But still, those breaks are so few that I never really feel revived. So, as a result, I have slowed down with my posts on this blog. I hope to pick back up again, but for now, this is all I can do.

So, for those of you that look for my posts, I apologize for their scarcit of late. I've just needed a little break and will be back again soon with fresh material, inspiration, stories, frustrations, research, and general information.

Schedule for Alzheimer's a Challenge

The one struggle we always have with Pat is her sleeping pattern. She tries to go to bed so early and I know part of that is our fault. Things have been stressful, the questions constant and grating on our hearts, and when she wants to go to bed at 7:30, we let her start getting ready. EVERYTHING is a concern lately. Normally I can remove whatever is making her uneasy, but not lately.

Anyway, she goes to bed by 8:30 and then is up at 6:30. I have caught her the past two mornings and sent her back to bed. Her reasoning is more impaired in the wee morning hours and to convince her that I am headed back to bed too is tough. Yesterday I sware the second I shut the door, she sprung from bed and got dressed. Today she stayed in bed for another hour at least.

So, do I continue to make her go back to bed? Or do we all just adjust our schedules? While she doesn't try to leave, cook, or do anything really, I still don't trust her to be up alone. Luckily, Mark is an insomniac so he hears her when she wakes most times.

I guess for now, we will try to keep her more active. Tonight I will try to get her to build a puzzle after supper or to color. And hopefully, tomorrow, she will sleep. You can tell she needs a schedule but when she wakes, she thinks she is supposed to be up... and once that squeaky wheel inside her brain starts turning, you can forget about her sleeping.

Lotsa Helping Hands Calendar Service

I just stumbled across this scheduling calendar specifically tailored to the caregiver! It is designed so that friends and other caregivers can sign up for different tasks like making meals, appointments, companionship. The best part about it is the service reminds those that sign up when they have scheduled to do something so you don't need to worry about it.

Here is the link to it! http://www.lotsahelpinghands.com/ I hope it helps. We all need a break and this tool can certainly help! Let me know your thoughts on the service once you try it out.

Favorite Game to Play with Pat and No, It's Not on the Wii!

I love playing Yahtzee with Pat. I can usually handle one and a half games before my good nature starts to fade... and no, it's not because she is winning. It's tough to repeat yourself  (Have I said that before? I'm sure you will see me repeat myself a lot.). Every time I remind her to roll and what to play. It sort of reminds me of when I was a child and couldn't get others to play with me. I would play games against myself. But I didn't need to remind myself to go, roll, write...

I always have to coax her into playing. I know she is afraid she won't know what to do so I tell her, "Oh, come on Pat, I'll help you." And I'm glad she will do it because it helps pass the time. I don't really see her get excited about it, but she uses her mind keeping score and rolling the dice.

She's pretty good at recognizing Full House, Large Straight, Small Straight and of course YAHTZEE! When her granddaughter is home for the weekend, this is a game we can all play together and it includes Pat in it. Inclusion matters so much.

If you don't have your own copy of Yahtzee, you can get it anywhere. I looked it up at Amazon.com (affiliate link) and right now they have it for as low as $6.48! It's important to keep motivated and playing games is almost a neccessity.

Activity for Alzheimer's Patients

I have discovered one of the best pasttimes for Pat! It helps stimulate her mind while giving me something to do that is different and entertaining on these wintery days when we are stuck inside. Puzzle Challenge: Crosswords & More! I know that I have mentioned this in a previous post, but it is so great, I have to talk about again.

Unfortunately for some people, you may not have the Nintendo Wii. I strongly recommend getting one if you have an Alzheimer's victim in your life. There are a lot of games you can play on it to benefit the patient as well as the caregiver and people of all ages are using it to stay fit mentally and physically.

Pat has used the Wii Fit Plus game with me. She will get on the balance board, have her weight measured and do the 3 balance tests that measure your Wii Fit Age. It's good to get her up and involved and I think in time, I could get her to try one of the games, but haven't found a physical game yet that she could do because of her back.

Puzzle Challenge: Crosswords & More  is a lot of fun for the whole family. Pat, her granddaughter, and I have tried the crossword puzzles and especially liked that they have different levels of difficulty. Pat is a pro at crossword puzzles and her face lit up when we played. We also tried the Word Search puzzle and Pat found 2 of the words before we did. It held her interest the whole time we played!

To get your copy of the games or the Nintendo Wii, I recommend Amazon(affiliate link).

If you know someone living with Alzheimer's, please share this blog with them and help spread the word. Thank you!

Alzheimer's Patient Activity: What Matters Most

New Years came and went... and Pat sat in her chair, watching us, staring in to space... and I feel bad for her. I feel bad that she is forgotten by society. So many people say they will call, stop by, take her to lunch, etc, but then we never hear from them. And I wonder why?

Why do people act as though she hasdied? Like she no longer exists? Mark and I both think people avoid her because they don't know what to do around her. What do they talk about? What will she do? Will she freak out? Will she remember who they are? I'm not sure what goes through people's minds. I understand their discomfort. Before Pat, I was the same way.

Now that I take care of Pat, though, I've changed the way I look at life. I don't think so much about what I am getting out of my relationship with her. More about what she gets out of it. Does it really matter if you are uncomfortable... even irritated for an hour or two? Just look at what good it can do for that person. It brightens the day for someone who has NOTHING to look forward to.

I guess that's why I take care of Pat. I know the difference it makes in her life. I know sometimes, it is a difference between life and death... and sometimes much more. There are bigger things than life and death that none of us would care to witness. I shutter to think about someone else taking care of her. I know the things she does even with two people living with her, loving her and watching her. How is someone with no emotional ties going to be when no one is watching them?

I know some incredible nurses and aides, but I also know some not so good ones. Who is to say which of the two would be her caregiver? She is safe with us, no question... no gamble. And it's fine the way it is. we just wish she had more interaction.

Interaction for Pat is important and it's hard for us to do it every day. Every day. All day. And it's not that she is tough to be around. It's that I have never spent 24 hours a day, 7 days a week in the same house with anyone ever. Even Mark and I spend less time together than we do with her so it would be nice to have visitors. I understand how akward it is though and that all her friends are as old as her or older.

Perhaps it is time to get some relief help from time to time.