Caregiving for Dementia: A Cooper Family Occasion

Cooper Family Occasion
For several years Denise Cooper cared for her demented mother and her extended family in a small town in Washington State. She recorded an extensive blog, from which this is a short excerpt....
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Introduction

In August of 1994, my two sons, my mom and I made our traditional road trip to California to visit my Grandmother. Grandma lived in a nursing home because she had broken her hip and couldn't be alone. Grandma still had her wits about her, even at the age of 95 and was as spry as ever. My mom had always been the first to jump in the car when she knew we were heading for California. We always drove straight through, sleeping in car the along side of the road for a few hours, then loading up on coffee. Mom loved it. This trip was different. Although it started out the same as always, it would change our lives forever.

The drive down was pretty much normal. Mom asking where we were now and how much longer until we got to Grandma's- When we finally arrived in Anaheim, where the nursing home was we got a motel room and mom couldn't understand why. She began to get confused and agitated. I thought that a good nap would help her and then we would go see Grandma. When mom woke up she was really confused and wanted to get back on the road, she stayed like this until she saw Grandma, her mother. We stayed in Anaheim for three days, the last time we saw Grandma Mom gave her big hugs and kisses, took pictures and helped Grandma back to her room, all the while Mom was continuing to be confused about things.

The drive back became unbearable. Mom began talking to people in the back seat that weren't there, seeing things, not recognizing familiar sights. She even thought that we had kidnapped her from her apartment and tied her up (it was the seat belt). I just attributed her behavior to lack of sleep and her age. After all, she hadn't slept much and at 79 that can do a lot to you.

A few days after we got home I took her to the doctor for a check up. Everything was fine, no problems noted according to the doctor. So, everything remained the same, Mom in her apartment and I in my house, visiting and talking in the phone as we always had. As time went on, little things kept happening. She would forget what time it was, thinking that day was night, night was day, forgetting to eat, not remembering if she had taken her medication, over-medicating as a result. Little things like that. So, after getting nowhere with her doctor, no answers, I decided that it was time for Mom to move in with me, this was February 1995.

We moved Mom out of her apartment on May 1st, 1995. We were looking forward to her 80th birthday, which was on the 17th. We were going to have a big party for her, however on the 11th she feel and broke her pelvis and right wrist. This was when our lives changed forever. The shock of falling and getting things broken, combined with lots of medication for the pain, for depression , for sleepless nights, for water retention, for dizziness, etc. and having her mother, my Grandma die on the 18th, just three hours after she last talked with her, threw my mother into a full blown case of Alzheimer's.

April 29

Yesterday was a low day for me, so was last night. I still haven't been to sleep. Insomnia or something. I feel like I am still a little kid and having to endure the same junk I did then. My Mom was not exactly the nicest person in the world, in fact she was down right mean. It's ironic, I started running away from home at 14 because of her treatment and here I am... I wonder what that Freud would say- I just know today will be better!!

May 2

I spent a restless night thinking. A few have mentioned to me via e-mail and telephone that I seem to have become very standoffish lately. Not really sharing my emotions and being pretty short. I analyzed all night and found that it is true, however, I feel I have no other choice right now. I have had to put a wall around my emotions, else lose it completely. My heart is heavy with concern for all of you that have shared with me your situations, I pray for all, each and every night. I was raised by a single, alcoholic, abusive mother. I began running away at 14 to get away from her. I fought my entire life to not be like her. She had two boys, then a girl. I was single, I had two boys, then a tubal ligation at 24 to stop that similarity. I moved to Washington state in 1978 to really get away, who came with me, mom. Her sons weren't there for her and my guilt was. I tried to live my life but, mom was always a fixture in it. Always abusive, drinking until 1995, when she moved in with me. I always excused her abusiveness on her alcoholism, now I excuse it on the Alzheimer’s. She complains about being lonely, depressed, unhappy, bored, well excuse me. I don't have a lot of time to 'play' with her. I have to clean up after everyone, wash her bedding and all of her panties everyday, scrub the carpet in front of her commode everyday, sanitize the main bathroom and toilet everyday, wait on her hand and foot all day, even though she can walk without assistance and knows where the coffee and fridge are. I have don't have time to be depressed, unhappy, bored or lonely because I am too busy being worried, stressed, anxious and tired. Where is the food going to come from- The light bill is high because she has to have a sauna going all the time. How am I going to pay the bills with little or no income- I start a day care, get one guy to come just so mom has something else to complain about, lest I forget, I am also going to start cleaning someone else's toilet, starting Saturday, so I can get a few more dollars. I'll really pay for that when I get home, " See, I told you that you didn't love me or you wouldn't have left me with someone else!!"

May 3

We had a good time last night. Robert, Crystal, Mom and I played 10,000 until 1:30am. They convinced me to play my old 45's, which we did until 3:30am. It was fun. Mom even enjoyed herself. I played some Patsy Cline for her and she sang along. Imagine that. Mom did good until about 4:45am, she got up from bed wanting to know where she was. She decided that she had to pack and leave, her children would be worried, her Mom too. This went on until 7:30 this morning. I finally got her calmed down and she went to sleep until noon. She is fine right now and remembers what we did last night and that she was being weird this morning. It's funny, she says that when that Alzheimer's takes over she can feel it, it is like a very bad headache and there is nothing that she can do to stop it. I wonder if this is real-

May 6

Yesterday was good. I got out of the house for a few hours. I went shopping for a birthday present for Crystal. I decided to get her a couple photo albums, one for me to put childhood photos of Robert in for her to keep and one for her to start. Robert got her an ENGAGEMENT RING!! Mom was none too happy with me for being gone but, it didn't last long. She actually went to bed at 9 pm, of course I made her get up at 9 am. I sat up on the computer instead of going to bed, dumb, I know.

10:30pm. We had a pretty good day. Crystal had a fun birthday, when Robert gave her the engagement ring we all cheered. David, his wife, and the girls came over for dinner and cake and ice cream. David’s wife wrote her first e-mail. Mom did pretty good, she is being VERY confused right now. She asked me to stop at the next gas station so she could go pee, she is sitting in her recliner! The family got a dose of what life is like with Mom tonight, they were surprised.

May 9

Yesterday was terrible. Mom was in a terrible mood. She got mad at me for getting her up at NOON, “She's old enough to get up when she wants to!!”. She was mean and nasty to everyone, including A. (Denise’s adult day care client -ed.) I thought it would be nice for all of us to go out to dinner, Mom was cussing out the other drivers because they wouldn't move. The first thing that she tried to find on the menu were the drinks (beer), then she got mad because I paid for dinner when she thought she had and then yelled at me for spending all her money and notified me that she was going to get her own place again because “It’s just not working out like this.” She yelled at Robert and told him to go to hell. When we got home she wouldn't talk to anyone, got mad again because I told her it was bedtime, “G--D--- it, I'll go to bed when I feel like it. You're not my boss. I'd rather be dead than have to listen to you all the time. I'm moving!”. I told her she has one of two choices, me or a nursing home, take your pick. This shut her up and she went to bed pouting, refused her bedtime meds., and wouldn't let me help her get into bed. I am letting her sleep all damn day if she wants, just so I can have a few hours of peace. My brother is coming down tonight for Mother’s Day weekend, he can deal with her tonight. I'm too tired today to listen to her.

May 10

My brother got here last night, he saw how Mom has been to me. She went off on me again, “I can't understand how a daughter could treat a mother the way you treat me. Why do you hate me so much- I want all of my money, I am leaving this f---ing place right now!” I thought that if I let her sleep in she would be in a better mood, she didn't get up until 2:30pm, and she was just as mean. Yelling at me because I didn't wake her up earlier. A no-win situation. At least my brother can watch her for me this weekend, I hope. He doesn't deal with her moods very well, sometimes he makes her worse by arguing with her. I know that she doesn't know what she is saying but, that doesn't make it hurt less. I slept in today and everybody else is still sleeping, so I think I'll go plant something or something.

May 16

Yesterday was pretty good. Mom was out there most of the day and night but, she was in a good mood. I watched my grand-daughters for a few hours and they played with Granny a lot, which Mom enjoyed. My little one, Kali, she is three in July, almost made me cry. She looked up at me with her big shinning blue eyes and said, “Nanna, you're the best Nanna in the whole world.” Gosh, I needed to hear that. She gave me big monster hugs and kisses. It was time to give Mom her evening meds and of course my little helpers had to take them and water to Granny. Jaide, my oldest one is 7, she asked me what all the pills do, I told her; but, when it came to the Gingko and maybe helping Granny get her memory back or make it better, Kali, with her innocent self says, “It didn't work Nanna, Sorry.“ God I love those girls. Tomorrow is mom's 82 B'DAY. I am taking her to a POWWOW. She really enjoys those. My friend’s husband is a dancer in the Grand Entry. It should be fun.

May 20

Crystal and I went out and look at wedding dresses, boy are they expensive!! She and her mom are going down to Eugene Saturday to a discount shop to look. Hopefully they will find one there. I am getting excited about the wedding. It is going to be small and non-extravagant but, the reception is going to be here. Lots of cooking and cleaning and decorating.

May 21

Things seem to have calmed down around here. Mom has been quite enjoyable lately. She has been joking around and laughing(at appropriate times). She is looking forward to going to the Dodger/Mariner's game in Seattle on July 14. She still likes baseball and remembers Ol' Tommy. We have been watching sports a lot on TV too. She wants to help me make cookies today, although I am dieting. I sure wish everyday could be like the past few have been.

June 1

This weekend has been really nice for me and Mom. Robert and Crystal have been gone all weekend so it has been just us. We watched TV together last night, a comedian on HBO, Mom laughed her butt off. She watched a Dodger game and really enjoyed it even though they lost. She remembers that we are going to one in a few weeks. I wish she could be like this more often, she almost seems like my old Mom. Sometimes though, this makes it harder, you see a glimpse of the old person for awhile, then they are gone again and you have to go through all the acceptance all over again.

June 15

Well, we survived the trip to Seattle. Mom had a hard time sleeping Friday night, she was up and ready to go at 5:30am. We left about 7:00 and made it in good time, little traffic. The game was good, although the Dodgers lost in the NINTH inning!! Mom was yelling and carrying on and having a great time. We had dinner afterwards and visited with my brother for awhile before heading back home. Again, we made good time. Mom went right to bed, even though she didn't know where she was. She remembers going to the game today, surprise! She is even in a good mood. Maybe the next time we will go to the horse races, she would like that.

June 17

I got a lot accomplished today. My garage is clean!! I am having a garage sale next weekend(maybe), now people can get through. I miss old A. Hope he is doing o.k. Mom is doing fine, although she is really being confused. She is certain that she moved this past weekend after we got back from the game. She wants to get her TV and clothes. Over and over again.

June 21

Hot Dog, I made $60 bucks today in the garage sale. I am going to do it again tomorrow because there are a lot of others in the area. Mom was really good today,(I gave her her B12 shot yesterday, that's why) rooting for me to make lots of money and making sure that I was warm enough. It was cute. It rained so hard I couldn't see across the street very well, beautiful first day of summer ;-( Crystal got her wedding dress yesterday, it is beautiful. A little over two months!! Mom's appetite has increased again. Sometimes she doesn't eat much of anything, other times I can't feed her enough. I started her back on L-Lysine and Lecithin again. I had her on it when she first came to live with me and it seemed to help her appetite and had some memory improvement, so, her doctor said go ahead and try it can't hurt.

June 24

Yesterday turned out to be terrible also. My Quincy Jones cat died. He had a girlfriend across the street and must have been hit by a car coming home. He made it to the front door and that was it. He was such a neat cat, my dogs loved him and he them. My grand-daughters are going to be heart broken when they find out. My Mom keeps asking where he is- I can't tell her he's dead because that would upset her too much but, thinking that he is just gone isn't helping either. I hate this.

June 25

GOD, what a week. I found out yesterday that my friend, G., has cancer again. It came back. There is nothing they can do now. The doctor said she needs four rounds of chemo. but, that it would kill her. Radiation would prolong her life awhile but, she doesn't want it. She is coming home, her Mom and I will care for her to the end. They live right in back of me so it will be easy enough getting there with my Mom. She is only 39, I hope God has a better plan for her than she had on earth.

June 27

Yesterday Crystal and I got to go up town for awhile. Robert watched his grandma for me, she was nice to him for a change. We were able to get some things for the wedding and even had lunch out. God, I felt like a kid in a candy store for the first time. I haven't been out in so long. Of course Mom was nasty as soon as I got back. Same ol' same ol'. She kind of mellowed out after we showed her what we got. Although she didn't remember that Robert was even getting married. She, I believe, is beginning to go down hill a little. The things that she has been saying lately are totally off the wall. Before they were at least based in some sort of reality, not now.

June 29

I took mom with me, Robert and Crystal to my friend Bonnie’s house yesterday. Mom had a good time. Bonnie is making the wedding cake for us, she also takes care of a couple seniors in her home. Mom enjoyed talking with them and kidding around. It was nice for all of us to get out together. We are going back more often. Bonnie understands how it is with mom, so it makes it easier for me to feel comfortable visiting.

July 8

I finally have most of the yard done, 1/2 acre of yard and garden is really too much to keep up with for me. Of course it is raining today so the grass will need cutting again in a few days, so will the weeds! Mom was in a pretty nasty mood yesterday. She is angry with me for giving G. my time. I walk up to her place in the morning and get her up, then do the same thing at night to put her to bed. It isn't like I am there visiting or anything. Her lady from church will be here sometime today for communion, maybe she'll get in a better mood then.

July 9

Mom was terrible yesterday. She was so mean and nasty. She decided that she was moving out even if she had to walk. All because it was bedtime, midnight, and she didn't feel like going to bed!! I finally got to sleep at 5:30 this morning, woke up to the phone at 9:30 and who is sitting in the chair right in back of me-- Mom. I sleep on the living room floor so I can keep an eye and ear open all night in case she tries to get out the front door. What is she doing now-- Sleeping in the same chair. AHHHHHHH. Sometimes I think I am going to go crazy, all of the COPING classes in the can't really help you deal with everything, I've been to many and taught many but this still gets to me.

July 10

Mom was a lot better yesterday. She got up in a good mood and pretty much stayed in one all day. She was pretty forgetful though and more confused than usual. She even went to bed without any trouble. Robert and Crystal went job hunting again today. Our rate of unemployment is three times more than the national average, so finding work is no easy task. I have talked with a few ladies about caring for Mom for me so I can go to work but, they think the deserve to get paid $10 - $15 per hour!!! plus meals. They must be crazy. Mom only needs supervision and lunch made for her, nothing else during the day and only if she is up. She toilets herself and can basically change herself if needed. I don't think I am going to find a job that pays me $20 - $25 per hour. Guess I'll just have to create a home business for myself!! Anyone have any ideas---

July 19

Mom finally couldn't take being in bed any more, she got up at 4:00 and stayed up until 11:30. She did pretty well the whole time. Still some pain but not much complaining. Robert and Crystal decided that I needed to get out so they watched Mom for me. I was gone for five full hours!!! I had a really good time. Mom didn't even get mad because I was gone and she was pretty good for them too. It seemed so good to be out in the public with friends around, people that I haven't seen for years.

July 24

Mom was really mixed up yesterday. She got up around 5:30am and would not go back to bed. She insisted that she needed to get home. Her boys were there and she knew they were going hungry because there was no food in the house and she had to get them lunch. She was crying and so worried about them. She began calling me Mommy and tried to walk out to the car so she could get a ride home. Then she would tell me how much that she liked the curtains and the house, it looked so much like Mom’s place. I finally got her to lie down at noon, but she didn't sleep. She was complaining about a very bad headache all day, aspirin didn't help. She was up and down all afternoon and finally just stayed up until 11:00pm. She came out of her confusion, a little bit, around 8:15pm but, went in and out. I really feel that she had another small stroke and I do think she has Multi-Infarct Dementia rather than Alzheimer's. The doctor has said he believes she has had several small strokes but, nothing shows up on the CAT scans. Her confusion is always at it's worse when she is complaining about having a bad headache.

July 25

Mom did good yesterday. She got up around noon and stayed up. She actually wanted to take a bath after dinner :-), we played a game of Trivial Pursuit after. Of course Mom WON! We had a good time playing. She and I got on a laughing kick and couldn't stop, our stomachs hurt from laughing so much. She even slept through the night!

July 29

Wow, yesterday Mom thought she was in a home again and didn't want to do anything. I told her that we were having an inspection by the administrator (lie, lie) and she needed to get her room cleaned up. She got right on it, after awhile she forgot about the inspection and just enjoyed helping me clean. She had strength and stable feet while she as doing it. Let's see, the windows need washing, just joking. She slept through the night again. I'm finally back in my bedroom. I decided that Mom hasn't tried to get out the front door at night in nearly a year so, I didn't need to sleep in front of it anymore. Problem is, I got used to the floor and now a bed is very uncomfortable. I feel like I'm in a strange room (well, it is) and have a hard time sleeping. Hope I get used to it soon.

August 2

Mom was in a strange mood yesterday. Like the old Mom would be. She was contemplating what she needed to get for the wedding, what else was needed for it, how much it would cost, did we have enough to get everything. Things that Mom usually doesn't worry about. Crystal decided on silk flowers for her bouquet so we got them and put it together last night, Mom watched us. It turned out really pretty. We also made boutonnieres for the guys, a smaller bouquet for the maid-of-honor and corsages for the women in the families. It was sure a lot less than real flowers ($295) and they are just as pretty. Mom was getting excited and anxious for the wedding to get here. I found out this morning that I am going to have to start sleeping on the living room floor again. I got up around 10 (yes, I slept in :-) and Mom was up in her chair sound asleep. I have no idea when she got up, I never heard her but, I know she didn't knock on the wall or call me. My room is right next to hers and I would have heard that. She hadn't been doing this too much in the past year so I thought it would be o.k. to go back into my bed, guess not though. I am afraid that she will walk out the front door if I'm not right there to stop her. Oh well, I dealt with 2½ years on the floor I guess I can do it some more.

August 13

Yesterday was a good day. Mom was in a good mood all day. She is getting antsy. The weather has been wonderful, which makes us all ready to be on the road. We always went for vacation to California/Nevada in August and still feel it in our bones. Last night we sat outside and watched the meteor showers. We were saying how much better we could see the stars about 100 miles north of Redding, along side the road. We would park off the shoulder, David and Robert would get their pillows and jump on the hood of the car with their Big Macs and shakes, Mom and I would be sitting in the car with the doors open, Mom with her Budweiser and McChicken, me with my cheeseburgers and large black coffee. It would be really dark because we always got there around midnight, not much traffic just the big rigs. The smell of hay with the days heat and the nights dew on it would remind us of Grandma's house. Gosh I can even smell it right now! We would be listening to Willie Nelson or Freddie Fender (the boys hated it)and Mom would sing along. God I miss those days, I miss my mother.

August 16

Mom slept pretty well on Thursday night. She was worried about H. (a woman with advanced dementia that was briefly a client at Denise’s daycare - ed.) all day but, happy to know that she was getting help in the hospital. Yesterday was a weird day for Mom. She got up again very early in the morning and came out to her chair and fell asleep. When she did wake up she didn't know where she was nor how she got there. She was like this most of the day, again she was complaining of having a terrible headache! I asked if she wanted to go to the doctor but, she refused, saying “ It wouldn't do any good at this late stage of the game.” Her appetite has decreased some as well and she isn't wanting to take her medicine again. She just wants to make it until Robert's wedding. She talks as though she is resigned to dying soon. She does say that she wishes she were dead so she wouldn't have to deal with this anymore. I sure hope that isn't the case. I firmly believe that when people give up or resign themselves to dying that it happens soon after. I'm not ready for that, I know that is selfish but,....

August 26

I made it through the wedding. It was beautiful. It was raining pretty good just before we were to get started but, it stopped until right when Crystal and Robert began to walk back down the aisle and then it only drizzled. Everyone made it to the house for the reception just in time. It began to pour off and on all afternoon. We were able to get pictures between downpours. The cake was absolutely beautiful. I will be posting pictures as soon as we get them. I really think everyone had a good time. The couple decided not to go to Vancouver for the honeymoon. The weather was so bad here and was to be worse up there so they went to the coast. That was the first place they went as a couple anyway so it seems appropriate. They will be back Thursday. I did real good until I saw my son standing at the alter waiting for his bride. That is when I lost it and started crying, I really did try not to. I love Crystal like a daughter and couldn't be happier for Robert, still, he is my baby and my best friend. Guess I'll just have to wait and baby my grandbabies huh. My Mom did really well through out the day. She was confused as to where she was, since the house looked like a reception hall to her and she kept forgetting just who was getting married but, all in all she had a good time and was just fine. Our friend Betty and her two grown children were here. Betty is the only one Mom really remembered and Betty just took control of Mom for me so I didn't have to worry about her. Her daughter cleared up and Betty did dishes for me. Lifesavers!! I must admit, I was glad when it was over. I sat down, had a cup of coffee and a cigarette and just relaxed, then I got the house back in order.

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