I kept a copy of my old blog called Life with ____ in case I wanted to write a book about my experiences as a caregiver for a dementia patient some day. I warn you parts of these entries are a little gross and unsettling, but that is just how it is sometimes when you are caring for someone with dementia. Here is an entry entitled "Gradual Changes":

"So, there have been some gradual changes that have been happening and a few little tips that I think I may have overlooked telling ____'s kids about. And for any other readers who may be caregivers, I will just go through what I can remember starting with ____ getting up through the night and in the morning. This is her routine, but the most important thing is for the one you take care of to have theirs that is stuck to as closely as possible from day to day. Of course, visitors or outings will disrupt it somewhat, but keeping the basics a routine is important.

Once in a while, even though I have the monitor on at night, (Barb's note: I was a live-in caregiver, and my bedroom was upstairs, so I kept a baby monitor on my nightstand, turned on while I was sleeping) I will not get downstairs until she has already used the bathroom. I always keep a clean washcloth draped over the left hand side of the sink in the same way. If she has used the bathroom before I could get there, invariably the washcloth will be folded over and moved. She sometimes uses the washcloth to wipe herself without using toilet paper at all. Not wet, but dry. So, then I know I need to throw the washcloth and towels in the laundry and have her wash her hands. She never remembers to use soap on her own, although sometimes she rinses with just water on her own if I have not made it to the bathroom before she finishes. I also check the toilet seat and general areas in her bathroom and wipe them down. She tries to pull the poop out if she's alone in the bathroom for even a second and encouraging her to keep her hands on her knees does NOT insure that it happens, even if you are gone only a second. She thinks she has to poop every time she uses the bathroom. She doesn't seem to have the ability to tell when she doesn't need to. She has given herself hemorrhoids straining to go when her body is just not ready.. But if she really does know she feels a bowel movement coming, she will be adamant about it. She will either say there's something there and point to her rear, or sometimes pat her belly and either say it hurts or feels funny. Even though she sometimes wants me to climb back into bed with her after she gets up through the night, or when I first tuck her in at night, I joke it off, saying that we'd keep each other awake snoring. This does the trick and gets a little chuckle out of her which is always good. I let her know I am always close by to help her if she needs it.

It is almost always easy to get her settled back in bed after she gets up through the night. If she wakes up after 6:30 am, she almost never is tired enough to go back to bed.

When she's up for good, I get her glasses and clean them for her, handing them to her to put on. Then, I have her take her morning medication (watching to make sure she doesn't chew it or try to spit it out) after sitting her down at the kitchen table. I put some music on which is fairly upbeat to get her motivated to eat and begin her day. She almost always has oatmeal and a piece of fruit. She gets half caff coffee with flavored creamer in it, but rarely finishes a cup. After she finishes eating and I have cleared the table, I ask her if she's ready to get dressed. She may grumble a little, but keeping upbeat and singing or joking a little gets her moving.

She has been struggling more and more with balance, so I help her take her pajamas off. I pull the pajama top up her back and then I usually have to show her now how to slip her sleeves off and lift it over her head. Then I take her day old Exelon patch off her back and put a new one on, unless it is shower day (twice a week in the winter, every other day when it's warmer) and then I put the new one on after she dries herself after her shower or immediately if it's not shower day. I have her pull the bottoms (underwear and pajamas) down to her thighs and sit on the bed. Then I pull them off for her. The pad goes in the garbage and clothes, if the pajamas have been worn more than two days running, in the basket. This is almost always when she poops for the day. If she has bad diarrhea, I will give her a dose of Pepto which is in the laundry closet. After she poops, I wipe her (because she sometimes wipes back to front which can cause UTIs. I use personal wipes on her after. This is also when she washes her hands, face, and brushes her teeth. I put very little toothpaste on her toothbrush because she gags like crazy as it is. If it is Sunday or Thursday, this is when she takes her pessary out and washes it as I watch to make sure it is done well. I put it on a folded paper towel, lead her to the bedroom.

If it is shower day (every other day in warm weather and twice a week in cold weather, I have been warming up the bathroom while she brushes her teeth by running the hot water (with the fan running) in the shower stall so that it hits her shower chair to warm the seat, as well as using the space heater set to high when it's cold. I slowly guide her into the shower room, take the shower wand down, helping her step over the threshold. I have her sit on the shower chair while I pull the curtain slightly so I can still reach her. I wet her down, ask her to hold the wand, I shampoo her hair and wash her body, all except her nether regions to give her privacy to do that herself after standing up. I rinse her bottom, have her sit again, then I rinse her from head to toe. I turn off the water, hand her the towel, turn off the fan, and let her know I will be just outside the door while she dries herself. After a few minutes, I open the door and check on her, reminding her I am there. When she is done, she comes out, I make sure her back is dry, and put her patch on.

She sits on the bed and dries her feet. If it is Sunday or Thursday, I have her lie down on her back, handing her the Estrace applicator, sometimes needing to guide her hand to the right place to insert it. After the medicine is inserted, I hand her the clean pessary, folded for her to reinsert. I hand her a tissue to wipe her fingers and any residue from the Estrace. I help her sit up and help her slip her clean underwear (with a fresh pad) on, along with her pants to her thighs, and she stands and pulls her pants up. I help her slip her bra on, and let her sit again. She is usually a little dizzy and tired at this point. I put deodorant on her and help her slip her shirt and sweater on. I place her socks next to her on the bed. She puts them on, but usually needs help adjusting them. She slips her shoes on, then we walk around the bed and I dry (if it's shower day) and style her hair. If it isn't shower day, I use a little dry shampoo on her hair and then style it setting it with a little hairspray."

Of course the details of caring for a dementia patient vary according to the stage of the disease's progression, but I think it helps to know how much may be involved for those who are considering taking this on. My sweet ____ gave the appearance to many who saw and interacted with her that she was not too far gone, but those of us who cared for her for days in a row knew better. She was still loving and sweet almost all of the time right up until she could no longer be cared for in her home, but that does not mean it was easy. When a person know longer understands the basics of hygiene it becomes a whole new challenge.

The next post was a continuation of a typical day, entitled "A Day in the Life of ____":

"This is a continuation of the previous post about a typical day for Ruth.

After she is dressed and her hair is done, I get her settled in her recliner in the living room, usually covering her lap with a warm blanket. She gets chilly easily. Usually she is so exhausted from pooping, showering and getting dressed that she naps for a while. This is when I get little chores done and exercise.

After her morning nap, I give her a light snack of yogurt or fruit. We then will either get some walking in together or do a puzzle or look at the memory book together.

She usually has lunch somewhere between 12 and 1 -- soup, a sandwich, or sometimes an omelet. I make sure she gets her meds, watching her take them. She has tried to chew them and/or spit them out before. After lunch, I take her to the bathroom. She doesn't usually realize she needs to go on her own any more until it needs to be a mad dash.

If we haven't walked yet, we go outside if the weather's nice and walk for about 20 minutes. If the weather is not nice, we walk in laps around the inside of the house. I use Pandora to keep us musically motivated to move. She likes oldies from the 50s and 60s.

When she seems worn out, I get her comfortable in her chair again, and I usually put in one of her musical movie dvds.

After a little time watching a movie, she usually falls asleep again for a little while.

When she seems refreshed and the movie is over, I try to get her up and moving again, either inside or outside.

Then, a light afternoon snack and some activity, maybe a game of cards, usually just a simple one like War.

I try to get her to help make dinner to feel useful and distract her because sun-downing (seeming agitated or restless, unhappy) has become common in the late afternoon/early evening.

I give her her evening medication, again watching her take it and we eat dinner, usually around 5 in the winter and closer to 6 in the summer. When it gets dark early, ____ starts getting sleepy earlier, so we have dinner earlier, too. She likes to say grace before lunch and dinner, but for some reason, it doesn't occur to her for breakfast.

More in the next post on how we wind down for the evening, and just a few general tips and observations."

Then, I posted about her end of day routine in "Winding Down":

"This post is a continuation from the two previous posts about a typical day for ____. Hopefully, it helps to see how important consistent routine is in the life of a person with Alzheimer's.

After we finish dinner, I ask ____ if she has room for ice cream, which is kind of our little joke. No matter how much she has eaten for dinner, she wants ice cream. Just one scoop is enough for her though. Sometimes she hears the words ice cream on TV and asks for it then, but I just reassure her I always give her ice cream after dinner and that usually satisfies her.

While she eats her ice cream, I check to make sure all the doors are locked and the buzzers are set in case she tries to open an exterior door in the middle of the night. She had done this before I could get to her before we had the buzzers. I also take the phone off the hook. I can't tell you how many times the phone has awakened her after she just fell asleep. Her kids have my cell phone number if they need to contact us. I turn on the little space heater in her room to the fan only setting and turn on the sound machine to the "white noise" medium volume setting. These background sounds muffle any other noises that might wake her up through the night.

I usually ask her if she wants to get her pajamas on right after ice cream. That way, if she starts to get sleepy, it will already be done. I lead her to the bedroom, take off her good sweater, (even in the summer she always wears one) unhook her bra and let her slip it off. If she has a comfy t-shirt on already, I don't worry about having her change into a pajama top. Who cares if her top doesn't match her pajama bottoms? After I unhook it, she does that Houdini trick of slipping her bra off from under her shirt. Not changing her shirt is just one less step for her to struggle with. Funny how she has no trouble with the Houdini trick though! But if she has a non-stretchy button front shirt on, or a kind of tight shirt on, we change into her pajama top.

When we get to the part where I help her take off her shoes and then pants, this is her signal that she needs to use the bathroom. She doesn't usually want to wait until she has her pajama pants on. While she's in there, I put toothpaste on her toothbrush. After I wipe her, she brushes her teeth and washes her face.

I lead her back to the bedroom, help her get her pajama bottoms on, and slip an old well-loved sweater on over her top. I stopped using her bed jacket because the fact that it's missing a snap drives her crazy. Also, it has a collar that she constantly wants to adjust. I now take her medical information necklace off at night because it sometimes is just one more thing to fiddle with as she lies in bed trying to relax. She sleeps with her socks on.

In the short days of winter, it's difficult to keep her awake to a decent hour, but I try to. If she doesn't seem to be up for anything (like watching TV) after getting her pajamas on, I lead her to the couch, sit her on the middle cushion and I sit in front of her on the floor. This is when we wind down by giving each other scalp and shoulder massages. I'm not being selfish having her do mine first. I know she always wants to do it for me after, but she will be too tired after hers. She loves to do things for other people, and she gives great back rubs! Usually, we give each other about 15 minutes worth. When it's her turn, I ask her to stand up and I scoot in behind her on the couch, having her sit in front of me on the cushion, because she shouldn't sit on the floor. I make sure she's stable and comfortable. After a few minutes, she will start saying she just wants to go to bed. I make sure she really is relaxed and not just saying that because it's on her verbal loop of things she says. Certain situations trigger her to say certain things whether they're true or not. In the winter, sometimes it's as early as 6:30 when she's tired enough to go to bed, but it doesn't seem to make her wake up at a ridiculous hour.

We go to the kitchen, I get her a drink of water, then I have her try to pee one more time. Then, I lead her to the bedroom and have her take her glasses off while I turn the bed down. I have her climb into bed and I tuck her in. I smooth my palm across her forehead, give her a kiss, and wish her a good night's sleep and sweet dreams. I remind her I sleep in the room right above her in case she needs anything through the night, (she usually forgets this, but it is comforting to her temporarily) then I tell her I'll see her in the morning, say goodnight and go upstairs until I'm ready to go to bed.

Just some kind of random info:

Sometimes she will say she can't "see" something when really she just doesn't understand what to do with it.

Sometimes, she uses the wrong word. like off when she means down, as in pulling down pants.

She personifies individual body parts as if she can talk to them to make them work right.

She may use the wrong pronoun or verb tense. She may look you right in the eye and refer to you as her when she's talking about you.

She sometimes starts pulling down her pants when you gesture for her to sit on a chair. I'm guessing it's because she thinks she's getting ready to use the toilet and thinks she's getting ready to sit there.

She may personify situations she doesn't like (like pooping or dealing with her pessary) and transfer the negative emotion attached to it to the person who was helping her through the situation. It's hard not to take this personally until you realize it's just her mixed up thoughts and she can't help it.

She seems most upset when she has her attention brought to the fact that her kids don't live here anymore or they can't stay longer. Even if she has had several days running of visits from loved ones, when they go out the door to go home, she thinks they are never coming back, just like a baby who can't see her mother -- separation anxiety.

When she was going through this once, I reminded her they had just been with her and she said she didn't "see" them. Again, I think this is her just using the wrong word. I think she means she doesn't "see" the memory of them in her mind. For a long time when she would say this, I thought she was telling me I was wrong, but I don't think that any more.

Sometimes she uses poor judgment in her actions. Here is an example -- One time, I was sitting in front of her for one of her wonderful back rubs. I had my finger up to my eye, rubbing it. She smacked my hand, startling me and making me poke my eye. I think she was being playful. She doesn't have good motor skills anymore. Sometimes her motion will be jerky and fast when that is not her intention. Anyway, I turned around before thinking with a shocked, questioning look on my face. She said with a smile, "I was helping". I don't know what she thought she was helping with. sigh But I truly don't believe this is a sign of aggression.

She will sometimes try to guilt her kids into coming to see her by telling them she has been unhappy when she talks to them on the phone. We may have been having a great day, sometimes even a string of great days, but she wants them to come so she tells them she is unhappy. Isn't it weird how someone with dementia may not understand how to hold a toothbrush, but they know how to emotionally manipulate people?

She sometimes uses the wrong gender to refer to people or uses singular forms of words instead of plural or vice versa.

She loves babies and children so much that she thinks they are all part of her family.

She will fake knowing people when she knows she should know them.

She will also fake understanding a conversation or fake her responses. Sometimes her responses are generic enough that people don't catch it, but I can usually tell.

She hangs onto negative emotions much longer than positive ones. If something she is told makes her feel bad, she will hold onto the negativity sometimes for days, but not remember what cause her to feel bad.

She sometimes gets blue and says she wants to "go home" It means she doesn't like her life situation now, but there are times when she really does not recognize sometimes now that this is her own home."

As you can see, there are so many little quirks and idiosynchrosies that can develop when someone has dementia. It takes an abundance of patience and love to be a dementia caregiver. There is no shame in admitting you are not cut out for it, or that although you have been doing it, you no longer feel you can do the job justice. I had to admit that after 3 years. You have to know your limits.

I am so glad for my time with my sweet ____. She taught me about perserverance and love and I learned and grew as a result of my time with her. It is not, however, a job for the faint of heart.