Life doesn't seem fair sometimes!

January 29, 2014

I feel like my Dad is being taken through the ringer right now!  Honestly, I don't know how much more one man can take in his life!  He seems to be remaining strong on the outside, but it makes me wonder how he's doing on the inside!?  Does he have moments of crying to himself? And moments of wondering what in the world has become of his life?  Certainly this is not what he had imagined his later life to be like . . I'm sure!  

 "Oh, we're really having a lot of fun over here!" is what he has said to me on the phone a few times in the last few weeks.  That is his sarcastic way of telling us that things have been a little crazy over there . . . especially lately!  He is dealing with my Mom, who half the time, is not remembering that he is her husband, and thinking they are not at their own home.  He is dealing with my older sister who has been in the hospital numerous times in the last little while with various problems . . . and a younger sister, a single mother of one little boy,  my nephew, who has recently been evicted from her apartment.  And, on top of that, when I went to pick up my Mom yesterday, to give my Dad a little break, and to allow him to go to his correlation meeting, I found him sitting on the couch in his bedroom, where the sun was shining on him, to find him not feeling well!  He had woken up with a sick stomach and achy body! 

My brother's wife's parents have offered to come to Salt Lake and stay a week with my Mom while my Dad goes to visit my other brother in North Carolina . . to just give him a break, and they are almost insisting upon it, but my Dad doesn't feel like he can do that.  Although my Mom forgets who he is half the time, she also relies completely on him to help her dress, do her hair and make-up, get to her social outings etc.  He doesn't feel that he can leave her!  

My Dad did decide to hire some ladies to come in to the house and help my Mom.  They will start coming in a few weeks and have been highly recommended by one of his friends, who also has a wife living with Alzheimer's!  We're a little worried about how my Mom will take having a few strangers in the house for 8 hours a day, 5 days a week!  Right now she says she doesn't want it or need it!  These ladies will be helping with housework, driving her places, keeping her entertained, and just watching over her.  Eventually they will be helping her with much more, but for now, that's what they'll be doing.  My Dad will be there much of the time, but he feels that this might be best, as her condition is worsening by the week!  

Here is one of the experiences my Dad has had lately . . . he was on the phone a few days ago with some car title people, verifying all of his personal information . . . while my Mom is in the background yelling, "He's a phony, he's a fake, he's not who he says he is!"  She was going through one of her bad moments of not knowing where she was or who this man was that her husband left her with!  The same thing happened to him as he talked to someone else on the phone that same day.  Can you imagine explaining that one to people . . . with a grown woman in the background yelling that he was basically a liar.  Oh, my poor Dad!  I just happened to call them on the phone just a few minutes after that happened and my Mom answered.  I asked her how things were going and she said, "Well, not good.  I am here with this man and I don't know who he is!"  I assured her that it was her husband and my Dad, as I could clearly hear his voice in the background  . . but she did not believe me.  She said, "People probably think I'm crazy but this is not my husband.  It doesn't look like him!  And he's being mean!  He just told me to shut up!"  I guess what happened is that he told her to be quiet and he walked in the other room and shut the door.  She then walked out of the house and went to the neighbor's house and told their great neighbor, Liz, that she didn't know who this man was that her husband left her with.  Liz walked back over with her and verified that it was indeed her husband, Mike . . and she even got on the phone with me and verified to me that it was my Dad.  Thank heavens for great, loving and understanding neighbors like Liz!  There are some good people in this world that we would not survive without . . . through this difficult ordeal!  Thanks to all her great, supportive friends! 

My Mom and I at Costco enjoying a little pizza!

Yesterday I picked up my Mom and took her with me to run a few errands and to take my son to piano lessons.  She was a trooper to drive around in the car with me for a long while!  Actually, she surprised me with how well she remembered me and everybody, and we had some good conversation.  She even talked about my Dad as her husband and not as a stranger!  She laughed at my jokes and even talked about how nice this girl was, next to her, (me) "Mardi . . . that takes time out of her busy schedule to be with her . . and to drive all the way in to pick her up."  She surprised me how with-it she seemed yesterday!  How strange this disease is!!  So unpredictable!  I was so grateful to be able to spend time with her and look at my experience with her yesterday as a tender mercy.  I hope to have many more experiences like that, but have a feeling they are going to happen less and less!  She is such a great lady trapped in this mind that is dying . . and that makes me so so sad!  Life doesn't seem fair sometimes . . . but that's just the way life is! 

Flashing back to 7.5 years ago . . . 

October 31, 2006

Today is Halloween and my day is filled with going to Halloween parades to see my kids in their costumes.  I’ve already been to the elementary school and in about an hour I’ll go to Spencer’s preschool to see his parade.  As usual, I’m dressed as a cat with my cat ears and painted on whiskers and black nose.  That's been my costume for the last handful of years!  Halloween is not my favorite holiday but I try to make it fun for the kids! 

My visiting teacher, Becky, called me this morning feeling bad that they have not officially visited me this month.  She gave me the message over the phone and then we spent the rest of the time talking about our mothers.  Coincidentally her Mom, who is also very young, 65, is showing signs of Alzheimer’s disease.  She has also not been fully diagnosed, but the signs are all there.  Our stories are so similar, it is amazing.  It sounds like her Mom is at about the same stage as my Mom.  I have known about Becky’s Mom for a few months now but have not dared bring it up to her because of the way I always fall apart when talking about my Mom.  I finally opened up and asked her about her Mom today and of course I could not hold it together.  I’m glad that I finally broke the ice because I think we’re going to be able to help each other through these difficult times.  She also believes that this is and will be the hardest thing that she will have to endure.  We definitely agreed on that!

My parents are just flying back from Baltimore right now.  My brother Steve and his wife Jenny live back there while Steve is in medical school.  Jenny’s Dad gave them a car and he didn’t have a way to get it to them, so my Dad offered to drive it back for them.  They drove three full days to get there and I had the chance to talk to them a few times on their journey.  My Mom seems really good and they both seem very happy.  They said the drive wasn’t too bad and they were getting to listen to a lot of books on tape and CD.  They love that!  It’s one of their favorite things to do while traveling. 

We have not been able to have a Sunday dinner together with our whole family for a long time – at least a month or more.  My parents will be leaving for Malaysia this weekend for about a week and then we’re going to get together then!  They continue to go on these medical missions where they go and teach people about neonatal resuscitation.  I wonder how long these trips will last.  I think they might be getting a little tired of it since they have been doing it for a few years now. 

December 7, 2006

            How much can one family take?  I’m not sure.  This is the question I have been thinking about for the last 24 hours since I talked to my Dad yesterday.  My dad said that he is surrounded by sick people and he longs for some normal adult conversation.  I’m proud of myself because I was able to hold myself together as I talked to him about all the sick people in our lives.  Usually I would be a crying mess! 

So this is what’s happening:  My Dad’s dad, my last living grandparent, just got out of the hospital after fainting down in Mesquite and having to be flown back up to Salt Lake.  He’s been experiencing faintness for a while now and the doctors believe that it might be due to his heart rhythm.  Last week he got a pace maker put inside of him and we’re hoping that it will do the trick!  Matt and I went to visit him a few days ago and his memory is not very good.  He could not tell us anything that happened down in Mesquite.  He was supposed to play in a golf tournament down there with a bunch of buddies, but it didn’t happen!  I can hardly even imagine what frustration there comes when your body begins to fall apart and doesn’t work like you expect it to.  I feel bad for my Gramps . . . he’s such a great guy!  Anyway, so my Dad is dealing with his Dad who is not feeling well and who is not remembering.  My grandpa has always been as sharp as a tack and so we are not used to him being forgetful!

Next, my older sister Paige just got out of the hospital yesterday after being hospitalized for 5 days.  I’m not exactly sure, but I would guess that she has been in the hospital at least 10 or so times this past year.  No doctors are completely sure what’s wrong with her but she has these attacks where she can’t breathe and she’s even had to be intibated (spelling?), where a tube is put down your throat and a machine breathes for you.  On top of asthma, she has even something more wrong with her lungs that the doctors can’t quite figure out.  She’s going in for a bunch of tests tomorrow.  Paige lives alone with her dog Andie right down the street from my parents and spends quite a bit of time with my parents.  

My other sister Cammy, just under me, found a lump in her breast a few weeks ago and has been waiting for the final results of the tests.  My dad was waiting to find out if they were benign or malignant yesterday when I talked to him.  I told him to call me back if the results were negative, but fortunately I did not hear back.  That’s one thing in our favor!

Lastly, my Dad deals with my cute Mom everyday 24/7.  I asked how things were going with her memory, and all he said was that it was very hard.  Although she can carry on normal conversation with most people and can function fine, my Dad said that most of their communication is her asking him questions of things she can’t remember or doesn’t understand.  He feels like sometimes he is babysitting his own wife.  I asked if my Mom is aware of her lack of memory and inability to keep everything straight.  He said “Yes!  She is fully aware of it and that’s why it is so hard.”  My Dad is still holding on to hope that maybe this is all something different than Alzheimer’s and that it will all level off and they can just learn to deal with the memory loss.

I’m proud of my Dad!  In the past I saw impatience and frustration on his part, but I’m sensing now that he is being more patient and loving with my Mom.  I sure hope that is the case because that’s what my Mom deserves!  My Dad is going to come out of all of this a much more caring and patient man!  He is learning things that he could probably not learn any other way!  I’m not saying at all that my Dad has not been a loving sort of guy in the past because he has.  I have always loved him to pieces!  I’m just saying that I believe there are things that I believe he is to learn from all of this.  I guess there are things that we’re all going to learn from all this.  We are going through the refining fire right now and it hurts!

I shed a few tears for my Dad last night while I laid in bed thinking about him.  He’s a strong person and I know he can do it!  We all can!  

My Mom and the cute twinners, Sammie and Cate . . . 2010!

Amongst all this bad news, a few days ago my whole family received some exciting news from my brother Mike and his wife Jennie who live in Boston.  They are expecting their second baby in May, which is not the good news.  Well of course that’s great news, but the even greater and more fun part of it is that they just found out that they are expecting twins!  We are all thrilled for them.  I never even dreamed that our family would have twins.  I guess it runs somewhere in the family.  My grandpa on my Mom’s side had twin brothers.

Christmas is coming too.  We should all be happy about that!

"My husband went home and left me with this stranger!"

January 22, 2014

My husband and I just had the fun opportunity to go on a cruise to the Caribbean last week.  My husband is a relationship coach and speaker and a travel company asked him to come on this one week cruise and teach some workshops throughout the week.  We were happy to go and had a fabulous time!  We returned last Saturday (4 days ago) after not talking to my parents at all for about 9 or 10 days.  I called my Dad on Sunday to find out how they were.  After a little chit chat about our trip and about their week, my Dad said my Mom wanted to talk to me for a minute.  That is pretty typical . . . when my Mom hears who my Dad is talking to, she often wants to just say HELLO.  Her social self doesn't like missing out! :)  Well, this time my Dad added, "Will you assure your mother that I am her husband and that she is at her house?"  Oh boy, I thought!  Things at first seemed as normal as normal can be at this stage in her Alzheimers.  She asked me how my trip was and if I was tan, and she told me she was glad for me that we could get away and that we got home safe . . . the typical things that my Mom would say.  I then asked her what was going on around their house.  She proceeded to tell me that her husband had gone home and had left her with some other guy . . . . my Dad!  For about 5 minutes I tried to convince her that the man sitting next to her was indeed her husband and my Dad, but she didn't buy it!  She said, "I'm all messed up now because my husband has gone home and everybody is telling me that this man is my husband!"  My Dad got back on the phone to tell me that this had been going on for about the last 5 or so days.  She lapsed in and out of it . . . but was mostly in it!  I really wondered when this day would come and did not think it would happen quite this early!  The man that she spends 24/7 with, that helps her dress and does her hair and makes her food is now a stranger!  This disease is so strange!  I really thought this stage was further down the road, closer to the end!  

I got off the phone and had one of my little breakdowns!  I feel we've entered a new stage with this disease . . . the stage of her not knowing her own family . . . the stage I have dreaded!  My breakdowns are a lot less frequent though these days . . . fortunately!  I have come a long way in the last few years!  There was a day I could hardly speak about it without crying and being so upset . . . and I didn't want anyone to bring it up . . . but it's getting easier, thankfully!  I've wondered if it's possible that a person go through the grieving process over and over again?  I feel like I've been in and out of it for over 10 years now!  Fortunately I feel that I am mostly in the "acceptance" phase.  I have accepted her disease and know what the outcome will be.  I just don't like it very much!   

I got thinking about this new stage my Mom is entering and was trying to find any positives of it.  I think I've mentioned that my Mom lately has had frequent moments of anger towards my Dad.  She has expressed anger of having the disease, and being treated differently, and not being able to drive, and not having control over the credit cards or money anymore.  She has often taken out her frustrations on him and has even hit him . . . . which is so unlike my Mom in her right mind!  Well the positive of this new phase is that if she believes my Dad is a stranger most of the time, maybe she won't get quite so angry with him . . . since she's usually on her best behavior with strangers or friends.  Also, my Dad said this morning that she is becoming less aware of her condition, which we believe is a blessing in disguise!  She's been pretty aware throughout this whole disease thus far!  

My parents at Alta in the 80's . . .
we all skied in my family!

My Dad is looking into hiring a few gals to come in and stay with my Mom for a few hours, a couple days a week . . . especially on those days that my Dad has meetings to go to or when he's volunteering at a clinic downtown.  He's a little nervous about it and wonders how my Mom will deal with it all.  We're keeping our fingers crossed!  

I pray daily that Heavenly Father will be merciful and will not let things drag out for too long!  My Mom is a woman of class and dignity and has told me before that she does not want to reach the stage of having to have her bum wiped!  Hoping!  

Flashing back to 7.5 years ago . . . 

October 19, 2006

  

I got a call from one of my Mom’s friends, Jean this morning.  My mom has known Jean for years through her book club of many years and from playing tennis, and from living in the same general area etc.  Jean’s husband, by the way, is my children’s pediatrician and I really think a lot of them.  They are some of the nicest people I know!  Anyway, Jean was calling me about something to do with my husband’s work, but at the end of that conversation she asked how my Mom was doing.  Jean is the same person that we ran into down in St. George a year or so ago who told me she had noticed a change with my Mom, which was the first time I realized that other people were noticing a change.  Anyway, she proceeded to tell me that she went to lunch with my mom and a group of women yesterday.  Jean had called my mom to see if she could pick her up.  From playing tennis with my mom, she has been fully aware of how forgetful my mom can be and so she thought it would be helpful if she picked her up and took her herself.  My mom ended up calling her yesterday morning to tell her that she’d have to meet her at lunch because she had some errands to run.  The luncheon started at 12:30 and Jean made it a point to repeat the time a few times to make sure she would remember.  Well, my Mom rolled in at about 1:05 to say, “Am I late?”  
          Jean has really been a good, supportive friend through all of this.  Ironically, about a month or two ago she suffered a very scary stroke and did not know if she would come out of it unscathed.  Fortunately for her, she has recovered almost completely, other than some headaches.  So Jean asked my Mom if she keeps track of all of her “things to do” on a calendar and my mom assured her that she does.  My mom says that the problem comes when she’s out and about and doesn’t have her calendar with her.  I guess maybe we need to help her find a way to carry it with her at all times. 

Jean and I both agreed that my mom can seem so normal and with it some of the time, and then other times she asks the same questions over and over and over again and can’t find words that she’s looking for.  What a frustrating way to live!

Whenever I talk to Jean about my mom, I always break down and cry. . . my bi-weekly breakdown.  My breakdowns usually come when I’m all by myself in the shower or driving in the car or just wherever.  I guess it’s just that there are certain people that I feel safe and comfortable with that I know I can open up to.  Jean assured me at the end of our conversation that she loves my mom and she will do everything she can to support her during this hard time.  That means a lot to me! 

Jean also said that my mom has been pretty open about her forgetfulness lately which I’m glad about.  She’s not trying to hide it anymore.  My mom admitted to Jean a while back that when they’re playing tennis she can’t keep track of the score.  Jean told her not to worry – that she would keep track of it. 

My mom told Jean something the other day which is quite sad.  A group of ladies that my mom has been playing tennis with for years are going to play in nationals which they have done many times.  They didn’t invite my mom to go this year and my mom is sad about it.  Jean is not in this particular tennis group and she is disappointed that they would not include her.  I guess it’s understandable that they wouldn’t want someone on their team that can not keep score, but her doubles partner could have helped her out.  I guess, according to Jean, my mom continues to play a pretty great tennis game.  It’s just the keeping of the score that she has a hard time with.

One thing that I really dread is the day that I hear that my mom is missing and no one can find her.  It happened with my Grandma a few years before she died.  I got a call on the phone one day saying that my Grandma had taken the bus and had gone downtown to go shopping.  She had not returned and she couldn’t be found.  Another time I believe she had tried to walk home from her doctor’s office and she got lost.  I think that day they had police out looking for her.  I remember feeling very hopeless on the other end of the phone knowing that there wasn’t a whole lot that I could be doing from 20 miles away and with my little kids at home with me.  I hope and pray that it never happens to my mom.  She goes out so much on her bike that I’m afraid it might happen on her bike one day and that she’ll get disoriented and lost!  

My parents with my Dad's sister Pat and his parents on a fun trip to New York . . 
25ish years ago!  This is my fabulous Grandma Margaret who also had
Alzheimer's disease or some form of dementia in her later years.
And this is my Grandpa Bill, who was a stud of a guy!

I’m fascinated with this disease of Alzheimer’s.  If that is truly what my mom has, it has not affected her Mother hen instinct of protecting her children and grandchildren.  She is still ultra protective and still tends the grand kids, usually with my Dad there to help.  It also has not affected her ability to drive safely and to make good judgments on the road . . . at least not yet.  I wonder at what point do you take away someone’s driver’s license?  

I honestly can not think of a worse way to go.  As I mentioned earlier, one of my mom’s worst  fears has been that of losing her mind and ultimately losing her dignity by having someone else have to feed her and wipe her bum.  As I sit here at my computer with tears streaming down my face, I just have to wonder what it is that we are all to learn from this.  Is my Dad to learn more love, patience and compassion?  Is that what I'm supposed to learn?  I think one of the reasons I am so upset by all of this is that I am a young mother with 6 little kids.  I am overwhelmed enough in my life without having to worry about my Mother who is slowly losing her mind!  Sometimes I don’t know how I’m going to do it!

The thing is, I believe that it’s helpful for me to talk to people about it, to cry and let out my fears and frustrations, but most of the time I don’t like talking about it.  It upsets me way too much and I’d rather avoid the topic.  Most of the time when people ask me how my parents are doing, I just say “fine, they are just fine!”  I have told a few people about her short term memory loss but then I quickly change the subject.  I hope I get to the point where I can talk to people about it without falling apart!

What does the future hold? That is my biggest fear!

January 6, 2014

I haven't seen my parents since Christmas day, but have talked to both of them on the phone a few times since then.  I guess my Mom has had a few incidences in the last week where she has gotten lost and ended up in someone else's car . . . in one case a total stranger's!  Yikes!

The first incident:  My parents used to have season tickets to the U of U basketball games.  They had them for years and years until they finally sold them a number of years ago.  They occasionally still go though when invited by friends.  Last week they got to go . . and as they were leaving at the end of the game, my Dad said there were swarms of people and he was afraid he was going to get separated from my Mom.  That's exactly what happened!  As he got to the doors to go outside, she was nowhere to be found.  Long story short - after about 30 minutes of searching for her and even some friends helping in the search, my Dad figured that she probably had just started walking home.  He started driving to go find her when he got a phone call from my Mom on a total stranger's phone.  My Mom had told these people that my Dad had left her and could she get a ride?  These strangers were driving her home!  Coincidentally they were not far from my Dad and they met up.  I would have explained to these people what the true story was, but my Dad didn't bother.  I think he was embarrassed and he said he didn't have time to talk to them.  My Mom's belief was that my Dad purposely left her!  :/

The second incident happened last Saturday as I was talking to my Dad on the phone.  Apparently my Mom had just left to go on a walk because she was mad at my Dad.  Lately she's been obsessed with the idea that her tennis friends are leaving her out and not calling her to play like they used to.  It's far from the truth, but my Dad can not convince her of that.  She is convinced that they are playing without her.  I said to my Dad, "Don't you think she's getting to the point where we can't just let her go out by herself?  She's going to get lost one of these days!"  My Dad said that it would be hard to tell her she can't go and to force her to stay home.  He also said that so far she's always been successful at finding her way back home on her own.  Occasionally my Dad will get a call from a neighbor saying they saw her walking in such and such a neighborhood, but she has always managed to get home!  

Well I guess a short time after we got off the phone, my Dad got a call from the Relief Society President in their ward saying that my Mom was down at the tennis club, which is one of the places where she plays tennis that is not really a comfortable walking distance away.  Apparently she had run into a neighbor (that she doesn't know well) and she told this neighbor she needed to get to the tennis club.  This neighbor, not knowing what to do, and not really understanding her condition, drove her down there.  Thinking she may have made a mistake, she drove right to the Relief Society President's house and told her what had happened.  Together they drove back down to the club looking for her.  She wasn't there.  That's when I believe they called my Dad to get in on the search.  My Dad drove down to find the same . . . but luckily around that same time, got a phone call from my Mom saying that she was at "Fresh Market" grocery store.  She was on her way home on foot and I guess borrowed someone's cell phone.  Thank goodness she remembered my Dad's cell phone number!  That's what we're most grateful for . . that she remembered his number!  What would have happened in both incidences if she hadn't?  Well, I guess the strangers would have driven her home from the game, and she would have had to walk home in the freezing cold on Saturday!  

Two Christmases ago all of us kids pitched in and gave my Mom an identity bracelet - a pretty one that looks like a nice pearl bracelet, that has my Dad's number on it.  She didn't have it on at the basketball game, but DID have it on last Saturday!  I think my Dad will make sure she doesn't leave without it from now on!  

My Mom and my oldest and only daughter . . . cabin time in the mid 90's!

My biggest fear is . . . what does the future hold for her?  This is the stage in her disease that I have dreaded the very most!  What else is going to happen?  My fear in the dead of this freezing winter is that she will really get lost!  I think my Dad might be realizing that it might be time to finally bring in someone that can stay with her and help him out a little!  I still want to help him out whenever I can!!  

Flashing back to about 6 years ago . . . 

October 10, 2006

            Coincidentally Matt and I ran into my parents at a party that both of us were invited to, but we didn’t know that each other were going.  It was a western Hoe Down up in Oakley, (a small town in Southeastern Utah) about an hour away from Salt Lake City.  It was fun because there were people my parents age and people our age, and everything in between. 

            We arrived late and my parents were sneaking out early, so I made them come back in with us for a few minutes.  You see, my Dad is not a huge fan of anything that has to do with him having to dance.  He didn’t admit that but I remember he’s been that way since I was just little.  We heard that they had already danced a few square dance numbers so we didn’t put any pressure on them to come dance with us.  To be honest, Matt doesn't love it either!  

            My Mom had forgotten that she had brought a sheet cake to share with everyone.  Everyone was asked to bring something to share and she accidentally left it in their car.  But when we arrived, she remembered and we took it in.  The problem was, everyone had eaten by that time.  She must have asked me at least three times in a ten minute period if I would be sure and bring home her cookie sheet.  I don’t like it when she does that.  It upsets me and it frustrates my Dad.  I always just pretend like she is asking me for the first time.  I don’t want to upset my Mom!  My Mom also asked my Dad about three times where her purse was.  My Dad repeatedly replied that she probably left it in their car.  

Summer of 2012 . . . with sis-in-law, Mom and sister!

My parents are such great people.  Why is this happening to us at this time?  I’m not sure I’m ready for all of this!!  I’ve already cried a million tears and I’m sure there’s a million more to come.

I used to think that it would be easier to lose someone close to me in a quick accident, but I think I’ve changed my mind.  Although I believe this is the hardest thing that I will ever have to go through, this is better.  It gives me time to remember all the great things about my Mom, and time to appreciate her and all her goodness!  I definitely am grateful for every little bit of time that I can spend with her, and of course with my Dad too!