Monday, January 30, 2012

A Glass (Half) FULL!!

small water Pictures, Images and Photos

It has been about a week since I last spoke to either of my parents. Reason being is that I feel Dad is probably so tired of hearing me blab on and on about the elder care attorney, the nursing home, the reasons for Mom to be admitted to ECH permanently. Deep down he knows what needs to be done. I hate to just keep rehashing everything over and over. Just hoping that he will take responsibility for the list of things that he must take care of on his own, things that only he has the ability to do until my sister and I are granted full POA.

On a lighter note the kids, David, and I watched some home movies over the weekend of our kids....birthdays when they were toddlers, and other adventures they have had. Yes, I cried a few happy tears, reflecting back to time when my children were so small, funny, and so sweet (of course you know they still are all of those things, just bigger). Also in some of those home movies were my parents (from about 8 years ago - year 2003) looking so happy and healthy. Dad's knees were still "his" knees and he acted and looked so happy. Mom had not yet been diagnosed with dementia and was living in the NOW. Watching those movies was a nice break in the (chaotic) action that I now live.

Amid all of this chaos though, I still feel like the luckiest woman alive. Folks.....no matter what life throws your way always try to look at your life as a glass half FULL, or even completely FULL. I found at an early age that if you don't LIFE will defeat you. Remember to stay strong, that it's okay to take a break, and always look toward the future. Nothing good can come from negativity.
XOXOX

Thursday, January 26, 2012

Mom and Me

Tonight I found this picture of Mom and me from one of my bridal showers, probably in late March or early April of 2000. This is how I want to remember my mom. This is how I want to remember feeling about my mom and I want to remember my mom loving me.

Meeting with the Elder Care Attorney!

Had a productive day yesterday as my sister and I met with an elder care attorney. Dad was supposed to go with us but had to cancel at the last minute because Mom was in a terrible mood and upset that he was going to be leaving for a few hours without her. My sister and I learned a lot about how Wills for the elderly are to be written in order for Medicaid to 'kick in', among other things. The attorney gave us a list of things that we will need to do before our next meeting with him. I am hoping that Dad will be able to help us to cross each item off of this list.

After the meeting with the attorney my sister and I met up with Dad to go over with him what we learned. Mom's caregiver had taken her to lunch so Dad was able to slip away. Dad seemed pleased to hear all that we learned and regretted that he had not gone.

In addition to the good that came out of this meeting there was a real bummer tid-bit of information that Dad informed Camille and me of. Mom's dementia paranoia has really kicked into high gear. She feels that the three of us are conspiring against her to put her into the nursing home. Well, that is partially true....the nursing home part but we are defintiely doing it for the benefit of her health and well-being, as well as Dad's. Dad told my sister and me that all of this has made Mom's feelings start to change toward us. I took 'that' as him saying that Mom doesn't like us much any more. I told Dad that if Mom ended up hating me when all of this was said and done then that was okay because I know that what we had done will keep Mom safe and well taken care of. I also knew that 'that' was her dementia talking, not Mom. If Mom was in her 'right, undemented mind' she would not feel that way and would be proud of us for stepping up to do what is right. Needless to say though, I was weepy about 'that' comment the rest of the afternoon.

Part of me feels like Dad and my sister are not completely on board for the nursing home either. My feeling is that Dad cannot continue living with Mom with the way things are going, fearing that he will die before Mom (see my note regarding their living situation from my post on Wednesday, January 18, 2012.

This is the hardest thing I've ever had to deal with in my life. I am really struggling to not let it effect my own family life. It's not easy. My kids saw me crying yesterday and kept asking me why I was crying. Trying to protect them I just told them I was sad that my Mom was so sick. I didn't think they needed to hear that my own mother may hate me.

Tuesday, January 24, 2012

From Marilyn's Birthday Book of Memories, from Joyce Boone - April 30, 1997

"April 30, 1997

I have known Marilyn for 20 years or maybe I should say I have known of her for that length of time. Hal hired me at my present place of employment that many years ago. As I began to know Hal, he began to talk of his family, especially Marilyn. There were many times that Hal would come in with a long face and we all would know that Marilyn was having a difficult time with her health. He would talk to me about her and before long I began to think of her as a friend also. I remember so many times after I was transferred to our Los Angeles Distribution Center, thinking of Hal and Marilyn and how she was doing. Then I was transferred back to Louisville and found out that Marilyn was working in Real Estate. I spoke with Hal and asked him if Marilyn would help me find a house. Well, that was all I needed to say. She immediately called me and the search was on. I think what stands out in my mind mostly was the day that I closed on my new home, Marilyn took me to lunch at The Bristol. I had not eaten there before and I so enjoyed the atmosphere and talking with her so much about general things rather than business. It was such a joy to see her looking so well after all she had been through.
And look at her now.
Marilyn, I hope that you enjoy your 60th birthday with all of your friends. I am sorry I could not attend, but I will be thinking of you. Have a great day.

Joyce Boone"

Friday, January 20, 2012

It's a New Day

I'm feeling better this morning. My brother-in-law came into town last night so now I'm focused on having him as a house guest. Having him here is allowing me to focus on anything other than my parents.

I am really struggling.

Thursday, January 19, 2012

Feeling Helpless

Today I feel like I have nothing left. How can my sister and I help someone who doesn't seem to want help. I guess Dad wants help but doesn't seem to want to change. I think he is ready to move Mom to the nursing home, yesterday he seemed excited. Today...I think he still wants to do it but he is still making careless, extremely poor, potentially dangerous decisions regarding Mom while she is still living at home with him. Even Mom knows she isn't supposed to be home alone, she is the one who called me to inform me that she was alone. Of course I rushed right over there this morning....no shower, barely dressed, even forgot my winter coat and gloves. Why did he say he "had no choice" when there are so many? Why does he act like he has no clue what to do?

Now my day is shot; I have so much to do but I feel I have nothing left. I feel like all of the air has been let out of my sail because I don't feel like we're getting anywhere....FAST. I really feel like giving up completely. Here I sit at my computer, writing, because if I don't then the anger and resentment I feel will brew inside of me and destroy me. My heart palpitations will come back. I will sit and cry. But instead I write this with a lump in my throat, trying to make sense out of my life right now.

Wednesday, January 18, 2012

What a difference a day (or a few) can make!

With Dad's physical and emotional health taking a serious hit lately I began to fear what would happen to Mom should something devestating happen to Dad. Actually, this has been in the back of my mind all along as you've probably read in prior posts. There was really NO long-term care set up for Mom, especially if Dad died or became debilitated before Mom.

I have had discussions with Dad over the past few months about pros and cons of Mom being permanently admitted to the nursing home. Turns out there were far more PROS than CONS. Here is the list I sent to Dad in an email following up our discussion...

Hi Dad,

Here is a list of things to consider for your current living arrangements. I've sent this to you once before. This is in consideration of Mom's benefit as well as yours. After the last few weeks I really believe the time has come to have a definite plan in place. If something were to happen to you then there is nowhere for Mom to go so this needs to be taken care of. We also need to work on funeral arrangements and money for that, as hard as that is to talk about.

If Mom were to go into ECH permanently now or later....

1. She will be SAFE, less chance for falling like at home.
2. Her meds will be given ON TIME daily.
3. There is some sort of medical personel on staff at all times.
4. proper physical and oral hygiene daily.
5. proper nutrition daily.
6. social and therapeutic activities daily. Right now all she does is sit around the house doing nothing.
7. she will, more than likely, have more visitation from friends and family than she does at home.
8. round the clock care. She doesn't receive this now.
9. and remember....no matter where Mom is she says she wants to go home so please don't base your decisions on her saying this.

For your benefit, Dad...

1. You will no longer have to worry about Mom's medications. They will be monitored by the medical staff at ECH and Mom's doctors.
2. so much less worry for you knowing that Mom is always safe.
3. you will have so much more freedom and can LIVE again.
4. more time for golf with your friends, movies and meals with your daughters and grandchildren.
5. time for volunteer work.
6. better sleep (and this will help with your depression).
7. you can spend time with Mom anytime you want and as long as you want.
8. Your physical and mental health will become better because you will have so much less stress.
9. Your friends will begin calling and inviting you again. They stopped because Mom can no longer do all of the things that you once used to do together.

Dad, in my opinion...you cannot afford to not seriously consider having Mom admitted permanently the next time she goes into the hospital. I honestly believe that both of your lives depend on it. You are both withering away with the way things are going now. I can hardly stand to see you living like this and being so depressed.

Please call your neighbor Pete whom you met at the meeting last week and set up lunch with him. I think having a friend like him will help you. He is going through the same things you are so he knows how you are feeling...confide in him. Let him help you too.

Also, Camille and I cannot both keep dropping everything we are doing at a moments notice. There MUST be a plan. We want to help you but you have to be willing to help us help you. I feel like you want the two of us to do everything and we can't. We need you! I love you Dad. Please help us. Anne

Today my sister and I went with Dad to the nursing home to meet with the Head of Memory Care and with ECH Pastor to find out what options there were regarding long-term care for Mom. The meeting went surprisingly well and Dad even admitted to me that he was excited about all of this. He now knows what will need to be done, what steps need to be taken, and now the appointments are being made for the hoops that we'll need to jump through to get Mom where she needs to be. After all that, Dad can begin to mend as well. I think I'm beginning to see the light at the end of the tunnel.

Saturday, January 14, 2012

Who, What, Where, When, Why?

The title of this post may seem familiar to you from the 1970's tv show Welcome Back Kotter. That is what Vinny Barbarino always said whenever he was asked a question in class. When I was a kid I and my family liked to watch that show. I never thought those five words would actually have relavence in our lives in a non-funny, completely different way. Those five words are what I was trying to help explain to my mother on the phone last night.

Last night which was Friday night January 13, 2012 I received a phone call from Dad around 6:00 PM. I was busy trying to get my daughter, Emma, ready for her schools Sock Hop which was to start at 7:00 (I almost had to cancel the plans for me to go to the Sock Hop with Emma and make quick new arrangements for her to get there). Dad seemed a little distraught but composed. He said that Mom was in bad shape, that she didn't know who he was, who she was, where she was, why she was (whatever that means), and she was afraid. He asked if I'd talk to her to hopefully 'reboot' her thinking (not really possible with a dementia patient).

Mom took the phone and said "Hello". She sounded tearful and timid. I told her who I was and I asked her what she was afraid of. I asked her how she felt. Her answer to both questions was "I don't know". I told her that she was with Hal, that Hal was her husband and my father. I asked Mom is she recognized Dad....she said "kind of". I had to convince her that Hal, her husband, was with her, taking care of her and keeping her safe and warm. I had to tell her who I was, my name, and that I was her daughter. I told her that I would come if she needed me. She asked "what good will that do? What will you do?" All I could say was "I don't know, we could talk about old times and good, fun times we've had". Mom declined.

I am feeling fairly certain these days that it's time for Mom to have a 'new' kind of care. She needs more consistency, more activity. She seems to becoming more childlike in a lot of ways. Moments of seeing "Mom" have deminished a great deal. For me, seeing Mom anymore is almost more than I can stand. It upsets me, it drives me crazy, I get frustrated, and I get sad. When I'm with Mom I don't feel like she is Mom, I feel like I'm with a stranger and it's a very uncomfortable feeling for me.

Wednesday, January 11, 2012

Support

It has been months since I last attended the Alzheimers Support Group meeting at the Episcopal Church Home. I went tonight, took my dad with me. I think the meeting was great tonight and really opened my dad's eyes to his, our, harsh reality. He is ready to make some tough decisions now....or at least he seems to be tonight. I am afraid that when he wakes up tomorrow morning that everything will go back to the normal chaos. The chaos that my sister and I are having to live with because of poor decisions or even no decisions.

I think my dad made a friend at the meeting. This man and my father seem to have a lot in common. My dad really needs a friend to lean on who can really understand what he is going through emotionally with losing my mom. I'm keeping my fingers crossed for this friendship.

All my thanks go out to all who were in attendance at tonights support group. I'll keep you posted!

Friday, January 6, 2012

So Far This Year...2012

1. Mom didn't know who Dad was.
2. Mom didn't know she had daughters.
3. Dad didn't know who I was. Could this be the beginnings for him? OH GOD NO!
4. Mom tried to buy my lunch at a deli using a Von Maur department store credit card then told me "if that one doesn't work use this one". It was a Chicos clothing store credit card.
5. Dad in the hospital for (possibly) his third TIA (Transient Ischemic Attack) or mini-stroke.
Wondering if I've left anything out.
!!!IT'S ONLY JANUARY 6!!!

Name Change

I did it. I changed the title of my blog from "Our Family's Long Good-Bye" because I felt like I had stolen it from Patti Davis who had her writings about her father, Ronald Reagan, published into a book called "The Long Good-bye". Not sure if I'm thrilled with my new title but this is what it will remain until something better pops into my head.

I also updated the description on the blog. Below (the paragraph in BOLD print) is everything I wanted it to say but I was only allowed 500 characters.....so out with the old, in with the new (description, that is).

And one more thing. I am glad to see that my blog has had over 2500 views! I hope that anyone else out there who is having to deal with a loved one living with dementia is reading this, knowing they are not alone, and maybe learning something along the way. To be blunt....this disease TOTALLY F@&#ING SUCKS!!!! And it litterally SUCKS! It sucks the life out of the victim and every single person around it. Dementia has even changed me. I am full of resentment and guilt and I don't know what to do about it. I'm on edge almost every minute of every day. I guess we are all victims. My father, especially. Dementia has taken a serious toll on my father and he isn't even the dementia "victim". My biggest fear is that he will die before Mom. Dad is Mom's caregiver. If he dies before Mom then Mom will most certainly end up in the nursing home. Dad is not well, has suffered 3 mini-strokes (TIA's) in less than 2 years. He is in the hospital at the very moment because of a (believed) third TIA.

This blog is like my therapist, my diary. I hope to not offend or upset any member of my family but I must be honest in my writing. These are MY THOUGHTS and MY FEELINGS, some of which are very raw and may seem cruel but they are MINE. I began this blog shortly after my mother was diagnosed with dementia. I was losing sleep with all of these thoughts racing through my head....I had to get them out....so this blog was born. It's my therapy.

Dementia is such a cruel disease robbing its victim of their precious memories and their physical being. Slowly it eats away at the brain of its victim, completely erasing everything that makes them who they are. Our torture is having to watch Mom slowly drift away from us. We are all trying to understand how to cope, how to decide the best way to take care of her. None of it makes any sense.

Thursday, January 5, 2012

Someone Please Get Us Off This Carousel!

Dad is now in the emergency room....we think he's had another TIA (mini-stroke). Can our family go for an entire month without one of my parents in the hospital?

Wednesday, January 4, 2012

An Important Lesson and a Must-Read by You

If I have learned anything from this whole experience (and I have learned a LOT) it is that you MUST have a plan for long term health care. Please, if you are reading this and you love your family and friends.....BY ALL MEANS HAVE A PLAN FOR LONG TERM HEALTH CARE!!! At this point I am harboring so much resentment for this very issue. And it was something that could have been avoided very easily. Upon the diagnosis back in 2006 a plan should have been put into place and money should have begun being saved. But instead there was a "head in the sand" approach, senseless and extreme spending (an example was a matching pair of Vespa motor scooters) and now....well, there is a serious predicament. My fathers physical and emotional health has taken an serious decline and because of this there is now an "I can't or don't want to deal with it" attitude from him. Now everything is left up to my sister and me; and probably including making funeral arrangements because that hasn't been planned ahead for either. No, no one has died.

How on earth will I ever be able to get over this resentment and my guilt for feeling this way? I do love my parents, deeply. I guess that is why I feel the way I do. Please feel free to offer any advise by leaving a comment. My sister and I (and my mothers sister's) sure could use the support.