Monday, July 4


I must say that today I am feeling a bit upset.  I am so tired of hearing everyone say how bad my father has it and how tough it must be on him.  Why the pity?? Why does everyone forget just how awful the marriage was and why is it taboo to speak the truth?  Why must I pretend that they kissed and hugged and loved each other unconditionally, when it was not the case?  Why does no one speak of the fights, the horrific trips, vacations or holidays?  Why does no one talk about how much they dreaded that Audrey was coming..Dying from Alzheimer's does not change that, despite her wonderful personality and caring heart, my mother was sometimes really really mean?  Do I need to glorify her just because she is dying?  And why does everyone say how bad it is for my father, but don't seem to consider that it is just as hard and tough on my brother and I? I love my mother dearly and feel honored to help take care of her, but that does not change the history I have recorded in my diarys, all those words of sadness and frustration that she caused me to feel.  Does it change the fact that once she is dead, my father will have a chance at a new life, probably a happier one than the one he had with Audrey?  I promised myself that when I started this blog, it would be a true reflection of my thoughts and feelings.  Not to write something that is an illusion, but to show the struggles and joys of caring for a person that is dying.  I must say that throughout this, I feel that the negativity and pissing contests the worst part of the caregiving:  who has it harder, who does more, how tough it is for so and so.  So few look at this experience from a positive outlook and will not face the harsh realities or truths.  People say how hard it is for my dad and I do not understand.  He is blessed.  He will have a chance for a new life and new relationship with a woman that might actually appreciate him and love him afterwards.  He has his two children by his side helping him along the way.  Everyone seems to forget just how much we are doing and not to sound selfish but what about us??? Once my mother dies, he will have a chance to date again and maybe meet someone new that will love him.  But for Kevin and I, we lose our mother whom cannot be replaced by anyone.  We have a future of holidays with my father and the possibility of a new wife for him. While I am ok with that, we will still not have our mom anymore.  I am tired of people trying or saying that it is harder for one person or easier for another when the reality is that it just plain sucks.  It is difficult for everyone when it comes to death.  I am a realist and do not mind people talking upfront with me.  But please dont tell me how much harder it is on others and expect me to stay quiet.  It is equally as hard for my dad, for kevin, and for me.  It is hard for anyone out there that is taking care of a loved one.  But there are so many fantastic things that it does offer.  It lets you see what you are made of, what your true character is.  It lets you depend on others and learn from each other.  It forms amazing bonds between people.  There are so many amazing things.  Yes I can say ...for my dad it sucks because his life is on hold. While he should be retiring and traveling, he is stuck taking care of my mother.  The problem with this theory is that if mom was well, they would not be traveling because my mother was not the type of person you took trips with unless you want to hate the trip and the time spent because she would get upset and make the trip miserable.  I feel that for Dad, it is tough because has to watch his wife, that he once loved, turn into this other person.And since their relationship was so difficult, it has to be hard to take care of her because he doesn't have love from all the years to carry him through; he has a reminder of the hate and fights that stared at him every day.  But the blessing in it is that he can start over and possibly find someone that will love him unconditionally.  My mother was so tough on him and on me.  She loved Kevin unconditionally but for my dad and I, we were never good enough.  So I can understand what he is experiencing. Yet how many other fathers can say that he is loved so much by his two children that they have sacrificed everything to help him take care of his wife? 

I do not get to talk to my husband or even see him except  to say hi by.  When i get home it usually is so late he is  And because it was so late, I would sleep in until the kids got up and jason would be gone.  So now I am going up Monday Wednesday and Friday nights staying utnil my mom falls asleep and Kevin is there Monday-Friday from 11-5.  That means, between Kevin and I, my dad gets a break Monday from 11am-3am.  Tuesday from 11-5, Wednesday from 11am-3am, Thursday 11am-5pm, Friday 11-3 am,  and Sunday for a few hours when Kevin goes up (which might end up with him sleeping over on Sunday night). The only day my dad has to take care of my mom by himself is Saturday, and even then usually I or Kevin usually pop in for a bit. So instead of pitying us, find it amazing that we work together to help each other handle this. Stop telling us how hard it is on whoever: yes it is hard but why not find the blessings from it.  How many alzheimers patients can say that they have three people dedicated to caring for them? How many caregivers can say they have two children spending about 50-65 hours a week helping them out? So we can choose to complain or focus on the brighter moments.  Tell me which is easier to listen to and sympathize with: A.) I am so tired because after taking care for two very young children, running up to visit some of our elderly widows for a couple of hours then rushing home to cook dinner, schedule babysitters for when I have to work, pay bills, welcome in the neighborhood teen moms, swim and have to rush Connor to the Er because he busted his front tooth and split his tongue in half.  I barely get to see my husband and tehn have to rush to my mothers sit with her as she mumbles incoherently, try to pick out a movie, muscle her into the bath, stay until 2 oclock in the morning until she finally passes out only to start again.  Or B.) Today I was so happy to take my children to visit one of our elderly widows.  She was so excited to see us since it had been a week from our last visit.  We spent a couple of hours with her and finally headed home. Once we were home, two of our neighborhood teen mothers came over to visit-showing me their newborn.  Watching my son gently kiss them made me feel happy that my three year old has learned to be so gently.  We then were able to go swimming and after, connor managed to slip and eat tile.  In the ER, he stopped crying and was so proud that his tongue was split in two and that he managed to wiggle the second half of his tongue.  Despite all the blood and gruesomeness, I started to laugh.  I even made it home in time to make it up to my mothers.  I said goodbye to hubby and went to spend the evening with mom.  I got to see my dad and chat briefly with him before hanging out with mom.  Just remember that  how you deal with any situation is a choice.  You can focus on how awful and how difficult things are, or you can find some reason to be thankful, something that is a blessing.  You will find that when you are positive a lot more wonderful things happen along the way.


Anonymous said...

Pain is pain. Grief is grief. It isn't that his journey is harder than yours, it is that it is different than yours.

I know that you are often sleep deprived, for example. When was the last time he was able to sleep through the night with no need to keep one ear open for an emergency? You get to go home and sleep knowing that you will be able to sleep through the night. He doesn't.

You have a husband and a partner in life. His partner in life is the one who has left him because of the dementia and who is dying. The fact that he might find another partner some time in the future, doesn't mean that he doesn't have to climb this mountain and the desert beyond first. The future is meaningless.

You, on the other hand, ARE losing the only mother you will ever have. That is certainly true. And hard!

Pain is pain. Grief is grief and there is no harder or easier. There is just grief and pain.

Kimberly said...

As a mother of two, there is not a night that goes by where I know I will be able to sleep through the night. I never know if Dad is going to call me because he needs my help with her. My Dad sleeps soundly trust me-he is a deep sleeper always has been and once asleep nothing will wake him. Short of the house collapsing, my Dad will remain unconscious. As kids we used to joke about it-we could jump on him and he would sleep right through it. Plus I stay until 2 or 3 just so he can sleep and he has Kevin during the Day to get rest. No one in this family gets to go to sleep at night and know that we will sleep through the night. The point I was making is that my dad and my mom had a horrible marriage and that he will be happier once she is gone. Then he can have a chance for a future that he always desired. He even knows that. This long journey is what is difficult for him because his life is on hold. THe wonderful thing is that he had a life-a family-a career. My dear brother has sacrificed all of that for his mother...

Anonymous said...

Good job on the writing. The reality of your situation sounds extremely tough and I'll bet you waffle back and forth in your emotions constantly. That can be exhausting in itself but the constant care routine for you and your family would exhaust a saint. I'm left to wonder though, just out of curiousity, is it financially not an option to have some hired caregivers as well to help in this last struggle? I know that my husband has really responded favorably to several of the gals and they are now like family. I don't have the close family to help so my options were not what yours are with your mom. Thanks for writing and sharing such personal thoughts. I'll keep you in my thoughts and send positive energy.

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