The Guilt

The Guilt.  I guess this is a good title because it's all about the guilt and the feelings related to the guilt when it comes to caring for a loved one with Alzheimers.  Yes, the guilt...I feel plenty of it.  As you may or may not notice, there is always a big space in time from my last post to my next and that's because it is so damn hard for me to write about this because I'm either extremely angry or extremely sad about my experience with my mother.  Just about everytime I post my feelings on this subject...I am crying.  Crying through my words, crying through my feelings, crying through my posts.  This time, all I feel right now is anger and guilt.  Usually anger goes with rage and guilt goes with depression or sadness but my feelings seem to be all over the place lately and of course, like always, my posts come late at night with the assistance of plenty of wine.  But when the thoughts are pouring out of your head, no matter what time of day or night, you need to write because writing is good and writing is therapeutic.  Sometimes it's like throwing up because you gotta get it all out in order to feel better.  I've been feeling guilty lately because I feel like at times I did not take care of my mother as good as I should have.  There were many times where I just plopped her in a chair in front of the TV so that I didn't have to do too much when it came to her.  I know that I should have taken her for walks more often, or read her a book or paid more attention to her at times but I didn't.  I was too busy trying to get caught up on laundry or cooking or paying attention to my kids or whatever.  Now everybody tells me that I should not feel guilty for that because I have a family and had to care for them also but I still feel guilty.  At times all I wanted to do was just sit there and be depressed.  It takes so much energy sometimes to allow yourself to feel what is going on around you.  Just the thought of my mom's illness and the thought of me having to have her in my house on the weekends would have me gasping for air at times.  I know that sounds crazy but it's true and these are my true feelings.  Some people are so good with others and are true caregivers because I think they are born that way.  Although I would like to think that I am a kind hearted person, sometimes I think that I'm not and so, because of that, I am left with the guilt.  I always tell myself to not have any regrets and to make sure that I do my part and do what it right so that I don't have any regrets but I have many regrets and one of them is that I wish that I could now go back in time and change some of the moments that I had with my mom.  Maybe if I would have been more attentive, maybe if I would have had more patience, maybe if I would have listened better, maybe if......I guess I'll never know.  It was so much easier when she was in her early to mid stages because these were the times that I had the most fun with her and she was so happy and carefree.  It was the times that she was in her very advanced stage that were the hardest.  Sometimes I would just stare at her and cry.  Of course she did not know what the heck was going on but I did.  I was aware of what lied ahead for her.  She was so innocent and had no clue.  It would make me so extremely sad.  At times I wondered if maybe there was a way that I could trade my life for hers so that she could have her life back but I would then come back to reality and remember that I had a family who depended on me and children who needed me and so I felt guilty for even entertaining those thoughts.  If my mother had a voice, she would say......"this disease is like a living hell" She would say, "Please, please, please find a cure so that no one else has to experience this dreadful, shameful disease."  My mother was always a very private person and did not share too many delicate details of her life with anyone.  I am torn between continuing with this blog because in order for those who know nothing about this disease to know the reality of what really happens, I will have to reveal all the horrible details of a beautiful courageous person who became a victim of this terribly unexpected turn in her life and I'm not quite ready to do that just yet.  My mother went from the very courageous, beautifull, full of life, outspoken woman to this scared childlike person who experienced moments of frustration, fear and depression and also experienced moments of hallucinations and that's about all I can reveal right now because the rest is too painful.  One of these days someone will read this.  Maybe one of these days the rest of the world will wake up and realize that this is serious.  I will stop here and don't know when I will pick up again or what kind of mood I will be in when I do pick up.  But for now, who ever you are that reads this...I thank you for taking the time to read it. 

Memory Walk - What is it all about and who are we all walking for???

On Saturday, Oct. 3, we participated again this year in the Memory Walk that is put on by the Alzheimer's Association.  This year it was in Oxnard.  It was a really nice walk and nice to see people participating and doing what they can do to contribute to the cause.  My wish is that one day the Memory Walk will become as big as the Relay for Life and all of their success.  It takes a lot of hard work and dedication by a lot of really wonderful people to put it all together.  This year I did not receive not nearly as many donations as I have in the past.  I think the economy has a lot to do with this.  Either that, or sometimes I think that people just don't realize how bad this disease really is and how many people it really affects.  It not only affects the person who has it, it affects the caretakers and their families but it also has an affect on many others as well.

There is a situation in my office that I have been wanting to blog about and so I will blog about it now.  I have a co-worker whose evenings have been disrupted by a woman who lives on her street that has Alzheimer's.  It started several months ago one evening when my co-worker (I will call her Pat) was relaxing in her home after work when she heard someone pounding on her front door.  She opened the door and there was a woman at Pat's doorstep.  The woman was asking for her husband and her kids and she told Pat to send them home.  The woman was clearly aggravated and not happy at all.  The only problem is this woman's husband passed away years ago and her kids are grown.  Pat could tell right away that obviously something was wrong with this woman and so she told the woman that her husband was not at her house.  Since then, Pat has had to deal with this woman on her doorstep several times and each time the woman demands that her husband come home.  This situation has become very frustrating for Pat because she is not only concerned about this woman's safety but also for her (Pat's) sanity.  Each time the woman shows up at her door, Pat dreads the very next time that she comes again and at times she is on edge in the evening at her house because she's expecting her to show up again and does not want to be startled by the pounding on her door.  At times Pat has told me that she dreads going home at night because she has become a little frightened about what the woman might do if she does not find her husband.  The woman walks with a cane and sometimes she will pound on Pat's door with her cane.  Pat is also concerned about the woman falling because she appears to be a little wobbly when she walks.  Pat has called Adult Protective Services many times and has called the police several times but each time has been told that there is nothing that can be done about the woman.  Everyone in the neighborhood knows about the woman and her condition but no one can do anything about it.

Pat was given the phone number of the woman's daughter by another neighbor and has had a couple of conversations with the daughter.  Now the daughter lives in a different city, is married, has a child and works two jobs.  From the conversations that Pat has had with the daughter, the daughter understands that her mother needs help but appears to be so overwhelmed with not only her day to day schedule, but also now with her mother's situation.  Pat cannot understand why the woman goes only to her house and no one else's house.   This past weekend the woman showed up at Pat's doorstep again demanding that her husband come home and telling Pat to send him home.  The woman is clearly frustrated with Pat because she thinks her husband is at her house and Pat is clearly frustrated with the woman.  Pat decides to telephone the woman's daughter and the daughter tells Pat that she is on her way to deal with her mom.  Pat shuts the door because she does not know what the woman will do next and quite frankly is afraid of what the woman is capable of doing.

The daughter shows up and walks her mom back to her house and then telephones Pat at her house and requests that Pat walk down to her mother's house so that she can have a talk with her.  Pat reluctantly walks to her house not knowing what to expect but hoping that this will somehow now resolve things.  When Pat walks into the house and is asked to sit down, the woman looks at Pat and says "What the hell are you doing in my house?" then she tells her to get the hell out and twice calls her an ugly ass person.  Pat is startled by this behavior and the daughter tells Pat that the mother thinks that Pat had an affair with her husband and that is why she thinks that he is still at her house.  The daughter knows that this is not true and tells Pat this but the woman cannot get it out of her head.  After the woman again made some more derogatory comments, Pat left the house.  Pat once again calls Adult Protective Services and is told, once again, that there is nothing that can be done about the situation and because of the privacy laws, they cannot even contact the family when these things happen.  WHAT IS WRONG WITH THIS PICTURE???

Nothing can be done...until it's too late!  I would like to know when the time is that they, whether it be Adult Protective Services, the police, her family, whoever, think they are going to do something.  Will it be when this woman wanders off into the night because she can no longer figure out how to get back from Pat's house to her house and wanders down the street and gets hit by a car?  Or, will it be when the woman decides she's going to cook something and instead burns down her house and the house next to hers.  Or, will it be when some lunatic decides to show up at her door and robs her or even worse, physically harms her.  When is it obvious in someone's mind that someone needs to step in and take control?  The daughter talks about helping but only shows up once in a while to check on her mom.  The daughter has her own life to live and obviously not an easy one.  It could be that her daughter has a situation that does not allow for her mother to live with her.  Maybe her house isn't big enough or maybe her husband won't allow it.  Honestly, I think her daughter is clueless when it comes to her mother's situation.  Why is that?  Could it be because after 100 years from the day that this disease was discovered that there still is not enough awareness about this disease?  Isn't the message getting through to everyone?  Hello....people, WAKE UP - especially the baby boomers.  Don't think for one moment that it can't happen to you or to someone you love.  Your husband, your wife, your boyfriend, your girlfriend, your mother, your father, your best friend, your neighbor...

What is the Memory Walk really all about and what are we walking for and WHO are we walking for?  I'll tell you who. For all of the scientists who are working hard to find a cure. For my mother who continues to need care.  For all of those that have just been diagnosed 71 seconds ago.  For all of those that will be diagnosed in the next 71 seconds.  For all the caretakers who are at the end of their rope and ready to jump off a cliff. For all of those family members who are left frustrated and heartbroken.  And let's not forget Pat and all the other Pat's out there who have now become victims and who are absolutely frustrated by the system. The Memory Walk is for all of us because this disease affects all of us in one way or another.  So, next time you see that the Memory Walk is in town, PLEASE considering making a donation because you never know when that donation is going to make it's way back to you in one way or another.

Memory Walk

Very soon the Alzheimer's Association will be having another Memory Walk.  This year it's going to be in October and it will take place in Oxnard at the harbor.  I will be signing up soon and trying to collect as many donations as possible.  Last year was the first year that my husband and all my kids participated and also some cousins, my son in law, mother in law, sisters in law and my husband's cousins participated.  We even took our dog.  I so appreciated everyone showing up it meant so much to me.  Every year my mom and I would participate until she could no longer walk because her disease was advancing even further.  When she was able to walk she would get very excited because she knew why she was walking and she always had hope that a cure would be found.   One day when I went to visit her at the convalescent center, someone had placed a bracelet on her wrist with the words "Hope" written on it.  To this day, my mother still has hope.  Hope is all we can ask for, hope is what we can cling to when we are all at the end of our ropes.  All of us who are or once were caretakers to someone with Alzheimers.  Hope is the key word that keeps us going and getting up one more day to fight to find a cure.  To all of you caretakers out there, I feel your pain and I know what you are going through.  It is my hope that this blog can somehow help not only me, but someone else out there who feels numb from the pain, frustration and exhaustion. And even I did not have the full burden of most caretakers.  My sister is the one who took care of my mom about 85% of the time.  I only had my mom on the weekends.  My sister, on the otherhand, had to deal with the worst.  She had to deal with the sleepless nights and trying to stay awake at work the next day.  On her days off, she cared for my mother.  When she got home from work she cared for my mother.  She cared for my mother and cared for my mother until she could no longer give my mother the appropriate care that she needed because of my mother's decline and round the clock needs not to mention the fact that my sister's health was now at jeopardy.  My sister is the real hero in all of this because she was the one that took my mother to all of her doctors appointments and made sure my mother followed a very strict diet and made sure that she had her medicine at the right time.  Between my sister and I, it was becoming impossible.  My mother got to the point where she could barely finish a sentence.  She could no longer comprehend what we were telling her.  It became frustrating for my mother and for my sister and I.  We had to make the decision to place her somewhere so she could get the care that she needed and so my sister could get her sanity back.  I too was ready to get a good part of my life back.

I always battled in my head whether to give up a good part of my life for a while and have my mom move in with me and my family so that I could take my turn with my mom like my sister did.  But when I thought about that, all I could think about was what it would do to my husband and kids.  I was already missing a lot of my kids games and other functions.  My kids played football, baseball and soccer and I used to feel bad missing their games but there was nothing I could do.  I think for the most part they understood but I just could not visualize giving up more time because I was afraid of what it would do to my marriage and what effect it would have on my kids.  I had to choose and I chose the sanity of myself and my family over my mother.  That sounds cruel and to some people it is cruel because apparently there are a lot of people out there that would do it in a heartbeat.  Maybe I'm just not that strong like I used to always think that I was.  When I read about people and families who have a family member live with them and each family member takes turns caring for this person, I always feel like I should have at least tried, but it was always so hard for me to handle this situation.  Every time my mom left my house, I always felt so drained and so depressed.  I felt like I didn't even know who I was anymore.  I went from caretaker to mom to wife to working mom to caretaker to mom to wife, etc. Some days I just wanted to sit and cry all day from exhaustion.  I remember when everyone at work would always be happy because the weekend was coming, I always felt like I would never see the day that my weekends would be free because, quite frankly, I did not look forward to my weekends.  And even now, now that my mom is somewhere else where she has the care that she needs, I miss her and I look back and think sometimes if it was really all that bad.  Maybe I could have handled things differently or reacted differently to difficult situations with my mom.  Maybe if I would have had more patience with her, maybe if....I guess I will never know and I guess it doesn't really matter now.  I was frustrated and feeling sorry for myself when I had to care for her and now that she's gone, I miss her.  I guess that's how it goes.

This is my mom at a park in Simi Valley.  My dad used to pick my mom up once a week and take her to eat or take her for a drive and this was a favorite spot of hers.  My mom and dad were divorced for many years before my mom was diagnosed.  It such a nice thing that my dad would even think to do this for my mom.  She always enjoyed his company and it made her very happy when he spent time with her.

Visit with my mom

I saw my mom yesterday. I had not visited her for about a week and a half. She looked pretty good and the nurses always tell me that she is doing good. She eats well and at times is pretty alert. She was temporarily moved from her room to a different room. I was told by the nurses that they moved her because her roommate was starting to deteriorate and appeard to be slowly passing away. This is really sad - her roommate is a really nice lady who always smiles and at times would ask how my mom was doing. She is pretty quiet and usually does not say much. I got there just in time to feed my mom. She ate almost all of her food but kept closing her eyes almost like she did not want to eat. The nurses have showed me how to feed her. I need to make sure that she swallows all of her food so I always make sure she drinks plenty of liquids when she eats. All of her food is pureed because she really can't chew her food. After her meal, she needs to stay propped up for about 15 minutes to make sure that she does not choke. At the end of her meal, she tried to say some words but it was all jibberish. It sounded like a toddler who is trying to speak. If my mother could speak she would tell me to take her home or to just let her die. I remember when my mom was still living at home and she had a caretaker while my sister went to work. Her caretaker had just put her in the shower because my mom had an accident (she could not make it to the bathroom on time). My mom was in the shower and the caretaker ran out of the restroom for a minute and for some reason my mother decided to step out of the shower and when she did, she slipped and fell and when she fell she landed on the floor right next to the bathroom door. Her caretaker went running when she heard my mother scream but could not get into the bathroom because my mom was blocking the bathroom door. The caretaker called 911 and the fire department had to remove the door in order to get to my mother. As a result, my mother broke her arm. This fall was so devastating for her. She was in alot of pain and the only pain medicine that she could take was tylenol with codeine which did not even seem to have any effect. My mother could not take any other type of pain medication because her system could not handle it. She would hallucinate with stronger pain medication and it became dangerous for her. When she came to my house on the weekend after her fall, all she kept saying was that she wanted to die. She kept crying because of the pain and just kept saying that she wanted to die. I'll never forget because that was Mother's Day weekend. On Mother's Day all she did was lie down on the coach. My husband's family was over and it was so difficult for me because I just felt like being alone with my mom and crying. She was in so much pain and I just wanted to take the pain away for her and I was angry because I couldn't do that. There are so many painful and frustrating memories of my mom when she was still at home. But, there are also so many wonderful funny memories of my mom too. I know that I need to talk about those more and I will. For now, this is good for me to be able to write about my feelings. This disease really scares me because it is like no other. The brain controls everything and when the brain starts to shut down, so does everything else...slowly. The person who has the disease doesn't realize it. They become frustrated at first because they can't remember things as good as they could but it's not the things that they did 10 years ago that they have difficulty remembering, it's the the things that they did and said a few days ago or a few hours ago. One may think that they are ok because they can recall the names of their family members or who they were friends with in high school or many other things or maybe they can still function well on some levels, but then can no longer balance their checkbook like before or are having difficulty adding numbers together or trying to perform regular routine things that they do on a daily basis. This disease is like the snake who slithers very slowly and silently and takes its time to snatch its prey in its jaws. Once it gets a hold of you, it's only a matter of time. But death is not fast and you do not die quickly. Death is slow and lingers for several years with each year bringing more devastation and frustration to its victims. It's the death of your brain and the death of your dignity. If my mother could speak...she would cry out and say please don't make me live this way. I am her voice because she can no longer speak. I am not the only one.

Well it's been awhile since my last blog. I'm pretty new at this blogging stuff and not real good with a computer even though I'm on a computer all day at work but we have an IT department that sets everything up and takes care of everything - all I do is type on it. Anyway, it gets real depressing for me after a while when I think about my mother's situation. It's good to write and I know that it's theraputic but there are days that I just don't want to think about it or deal with it. My mother has been in a convalescent center for over a year now and I visit her but sometimes I let a week or a week and a half pass between visits because sometimes it's just too hard to visit her. She no longer speaks and cannot walk. She can't lift her head, her arms, her legs (she tries at times) or do anything else. She just lies there day and night, night and day. She has excellent care and really nice nurses that take care of her. They get her up almost every day and put her in a wheel chair for about an hour and she seems to enjoy that. She also seems to react at times when we go and visit with her. Alot of times, she just sleeps or does not even know that I am there. Sometimes when I'm in her room I cry because I still can't believe that this happening. I pray all the time that she can recover, that she can be cured. I pray for a cure, that the doctors can finally find a drug to cure this piece of shit disease, if not for my mother, but for the rest of the people that will be diagnosed down the road. This disease and its effects is so, so sad. My mother always told me that if she was ever on life support or was in an accident where she was brain dead and could no longer function, she wanted me to pull the plug. She always told me, "Don't you ever have me in a convalescent center like a vegatable, I wouldn't want to live that way." The only problem is that there is no plug to pull. In the meantime, she just lies there day and night, night and day. We almost lost her last year right around Christmas time. She had to be hospitalized because she developed pnemonia and also a urinary tract infection. The doctors at the hospital kept telling my sister and I that she was very ill and they had no idea whether she would recover. When she started getting a little bit better and her pnemonia was going away, they brought someone in to try and feed her and do a swallow evaluation. I was told by the hospital that she failed the swallow evaluation because she did not want to eat and kept pocketing her food in her cheeks. We were told to call hospice and take her back to the convalescent center because if she was no longer swallowing, this is the beginning of the end. It was a few days before Christmas and she was sent back to the convalescent center with hospice. We were told by the nurses that her death would not happen right away that it might take a few weeks but that we would be able to tell. We had her moved to a private room so that my sister and I, my husband and kids and the rest of our relatives could spend our time with her privately. Although hospice ordered that she no longer be fed (I found this out later), my sister and I told the convalescent center that we wanted her to be fed. We wanted them to try every day to feed her, not force her, but to try and feed her. Well...each day she ate a little more and a little more and she actually recovered and starting eating 80 to 100 percent of her food. We canceled hospice and she was moved back to her room. She has since then done very well, for someone with late stage Alzheimers, and she has recently gained some weight. Although now, we just found out that she has developed cateracts. Of course, they cannot operate because of the risk so I guess, she will eventually go blind? I believe this is what happens if cateracts are untreated and not removed. I cannot believe this is happening to my mother. A woman that was such a happy go lucky person. Loved her family, her life, her job and her friends. It it such an extremely sad situation. Anyone in my shoes can relate. Anyone who has taken care of a loved one with this disease knows what I am feeling and what my biggest fear is now. If you know anything about Alzheimers, then you'll know what I'm talking about. I have to be strong and not think about it. I have to go on and turn this in to something positive. It's just very hard to do. What is so damn positive about something so heart wrenchingly painful. Pain in your gutt, pain in your heart, pain in your head, pain all over. I sometimes resent other people whose mother's are still healthy and able to speak and go places and enjoy their lives. I don't like who I am turning into. I feel like I'm turning into a wimp. Someone who cannot cope with this situation. I have to get up over it and be on top and not let it ruin my life. I feel like a black cloud is over my head sometimes. Sometimes I feel like crawling under a rock. Sometimes I feel like going to sleep for a real long time. I don't like the attitude that I have. If I think about it for too long, then I get so depressed. But I know that If I'm not going to go to therapy anytime soon, then this blog is probably the next best thing for me to do right now. I will be going to see my mom today. Sometimes I read to her. If not, then I play her CDs for her. She loves Abba and Johnny Cash. She also loves to hear classical music. I try talking to her but she doesn't answer me. Sometimes she'll make a noise like she's trying to talk back or it looks like she's trying to say a word or two. My sister always seems to have better luck with her. I think my mom remembers my sister more than she does me. It used to bother me but I'm just glad that she can at least remember my sister and that might be comforting to her.

Alzheimer's frustration continued

My mother was first diagnosed by her primary doctor and then again later at the Memory Loss Clinic at UCLA. The whole experience at UCLA was very disappointing because they first informed us that because of my mother's age, she was a perfect candidate for a case study. She was very pleased to hear this because she desperately wanted to be cured. The doctors over there sort of strung us along and then at the last minute after signing all of the paperwork and after giving us all the details and what to expect, they changed their minds. WHAT A BLOW! As if we hadn't had enough bad news already. I was furious and demanded an explanation but never received a real explanation, just that they felt that she did not have the capacity to understand what was going on. Which was a bunch of BS because she felt so let down and was very upset. After that and for the next 5 years my mother lived with my sister and stayed at my house on the weekends. At first it was an adjustment to my sister and I. My sister and I both had to learn all her medications and make sure she took them at the right time. Soon after her diagnosis of Alzheimers, she became diabetic. I'll never forget this day as well. We were all at my oldest son's baseball game when she told me that she was not feeling well and wanted to go and sit down in our car. I walked her over to the car and she became very disoriented and had trouble walking. I could barely get her in the car and right when I did, she lost conciousness and turned white and then her lips started turning purple. We immediately called 911. Right after that she opened her eyes but still looked terrible. By the time the paramedics came, she looked better and was talking but she was still dizzy. The drove transported her to the hospital and they checked her out really good. They checked her blood sugar level and it was alarmingly high. The doctor's in the ER said that she may have gone into a diabetic shock.

So, in addition to the medicine she took for Alzheimers and Diabetes, she also had to take medicine for hypertension, hyperthyroidism, cholesterol, depression, etc., etc. I felt so bad for my mother having to take all of this medicine and she was always so good about taking her medicine and trying to eat good. During the time that my mother lived at home, she was usually pretty good and not too hard to take care of. Other than a few months here and there of some episodes of very bizzare behavior, she wasn't too difficult to take care of. The difficult part was watching all of these things happen. Watching her deteriorate every day with each day bringing some new challenge. It's a lot like watching someone disappear little by little each time.