Caregiver in Crisis

I’m going to be honest – I’ve waited almost a week to post this as I am just getting myself back into a semblance of emotional balance over what happened last weekend with my parents. This ride on the Alzheimer roller coaster definitely has twists and turns that I am not prepared for. A week ago, my father called me and I think surprising both of us he unloaded the depth of his emotional crisis on me in one fell swoop.

The thing is, for anyone who knows my dad, he is one of those strong, silent types. He is also a rock. The strong support of his family so this tidal wave of emotional turmoil and frustrated rage was completely unexpected and out of nowhere. As the primary caregiver for my mom, my dad has had 24/7 care of my mother since her diagnosis three years ago.

For about six months, we – my brothers and I and our spouses, have all noticed that my dad is looking “tired” but of course he has denied that until just recently. We all knew that care of my mom was taking its toll on my dad but as my dad wasn’t really willing to let anyone in and let anyone help him care for mom there wasn’t much we could do except remind him we are here to help him.

Obviously, last weekend he hit his breaking point. My mom and dad have been married for 53 years and the absolute love they have for each other has always been obvious – an example to us kids on what marriage can look like so imagine my surprise when all of a sudden my dad is telling me things like they are going to get a divorce – he will let mom come and live with one of us kids etcetera, etcetera.

My logical mind was telling me – he didn’t mean anything he was saying. He was crying out for help. Telling me in the only way he knew how, how very bad things had gotten and that he couldn’t go on. My emotional heart shattered both for my mom who let’s be honest here, doesn’t have a clue what is happening, for my dad who has pushed to the point where he would walk away from the woman he has loved for 54 years because things are so hard and for us kids who would be devastated if dad did take such desperate measures.

He “poured it all out” on me for thirty minutes and was much calmer by the time her got of the phone with me but that call left me with a lot of work to do. I called the ALZ hotline (1-800-272-3900 – thanks to T.R. for making me call them immediately) and spoke to a counselor and I can’t believe what a help it was. They talked me through my own emotional state, talked to me about my dad’s state of mind, loaded me information and then pointed out what they thought were good options care to discuss with my dad.

They told me to buy the book “The 36 hour day; a caregiver’s guide to Alzheimer’s”  for my dad – which I did and it just arrived in the mail. I’ve browsed through it and know I need to buy myself one too. Its a amazing – just saying – and I think it will really help my dad understand Alzheimer’s in a way I don’t think he has been able to see it.  They also showed me how to use the ALZ website effectively and showed me how to find local support groups.

I went over the next day and talked to my dad about all the information they gave me. He listened. He cried. I cried and then I have left him alone this week to process things. I then called both my brothers and updated them on where we were with my mom and dad. I wanted us all on the same page – working together to support my dad and in the end my mom. We’ve been so focused on taking care of mom that we have left dad to his own devices and now our dad is in caregiver crisis.

As a caregiver it is SO important that they take care of themselves. that they are supported and that they have a safe place to unload. In this case, my dad is watching the woman he loves disappear before his very eyes and struggling every day to just get through one more day and all the challenges it brings. So, my mom is where my mom is in the process of this disease – it’s an unchangeable fact and now our focus has to be on dad.

To say that his emotional dump shook me up would be an understatement. Rather it was like getting hit with a tsunami, followed by a tornado and I have felt all week like I am now standing on the mountain top looking at the emotional ruins. I can see all the work that is to come but I can’t summon the energy to take another step. So….I have been licking my emotional wounds so-to-speak but I am not one to ignore a challenge for long.

My older brother said something that I have been thinking about everyday: “As long as mom is alive there will always be one more step to take along this path.” We have stepped into a new phase of this disease and I am left wondering if every step will be so devastating. But….I did learn that my personal support group is so much bigger than I realized and just like my dad needs love and support so he can love and support mom through this, my friends and family are there to love and support me so I can love and support him. It’s one big circle of love and I am so grateful for that.

 

No Ostriches Here

There is a rumor that Ostriches stick their heads in the sand when they see trouble coming and I swear there are days that I think I am an Ostrich according to that rumor.

Someone asked me the other day how my Mom was doing and I found myself saying “stable” as if that was a be all – end all kind of answer. They nodded their head as if they understood exactly what “stable” meant even though I knew they really didn’t have a clue as to what that entailed. So, even though I really wanted to say “stable” and leave it at that (Can’t you just picture me being an Ostrich sticking my head in the sand right about now?) I felt like I needed to go into an explanation of what that meant…….”She’s on medication. It will hold her at this level of memory loss as long as it can, hopefully long term, but eventually it will not work any more and then we will be on to a new phase in the journey. For right now we are still dealing with the current memory loss and trying to live as if it isn’t a life changing issue”.

Sounds pretty straight forward and sensible right? However, it nowhere near describes the complex layers of emotion tied to that by now rote statement. I realized even before I starting speaking that “stable” was a defense mechanism I was employing to avoid the emotion of the situation but its a crappy defense if you still feel guilty about not keeping people informed when they care enough to show an interest. The truth is that its really nice to know my mom is loved by my friends too. It’s nice to know they care about how I’m coping with the situation but some days when those words, “How is your mom doing?” leaves someone’s lips and reaches my ears its like my Ostrich “trouble radar” goes off and my brain processes the words as “emotional hellhole directly ahead…avoid…avoid….avoid!” and the overly simplified, unemotional answer that pops out of my mouth before my head goes diving into the sand is “stable”.

That being said, my mom IS stable and things are great in comparison to what others are experiencing in this process with their own families and I’m truly grateful for that so if you happen to ask me how my mom is doing and I smile and say stable, please know its the absolute truth and if I don’t happen to elaborate or I don’t elaborate much beyond that just know its not personal…I just might be avoiding emotional hellholes that day.

Snap back to reality

Funny, I never thought I would be quoting Eminem as an explanation for how I was feeling but….here we are. In his song Lose Yourself there is one line that says “Snap back to reality, Oh there goes gravity.” Yep, that is pretty much exactly how I feel right now.

In my last blog post I mentioned that we have Fairy Day coming up tomorrow. It’s there on my horizon but it is also busy season for my job. Every day is filled with activity and there is so much on my plate to handle both personally and professionally right now that I usually go into hermit mode until after mid-December because I literally can’t take on more or cope with more than what I already have to take care of. I say all that to tell you that I am pretty much wrapped up in my own little world right now.

Then yesterday afternoon I get a call from my mother. She is worried that we haven’t invited Chrissy for Fairy Day. (This is where I hear the words Snap back to Reality go through my head.) Despite talking to my mom every day this last week about Fairy Day she didn’t remember that Chrissy is coming. (It’s like being jerked out of a dream- my dream world of what is important to focus on and snapped back to the reality of what is happening with my mom) We have a brief conversation and I can hear in her voice that she is tired. She apologizes for being worried. (Really? Why the hell would you apologize? Okay – stop and see it from her perspective. She’s embarrassed now that she didn’t remember.) I tell her it’s okay and she starts to cry. She explains its been a rough day and she is really tired. (one of her triggers for memory loss) I calm her down and remind her that everything is handled. I tell her all she needs to worry about is being ready when I come to get her. She relaxes and we end the phone call. I spend twenty minutes trying to regroup and not cry. This is part of dealing with this. These moments come, deal with them, move on.

I think I’ve handled things pretty well and we are all set to go…..until a few minutes ago. Mom calls me and tells me she has decided that she shouldn’t go to Fairy Day tomorrow. When I ask her why she starts to cry. She has nausea and doesn’t thing it is a good idea she go. I tell her that I would hate to see her give up a day that means so much to her for something that is mostly in the morning. Then she tells me that it isn’t just in the morning anymore. Its pretty much all the time and she can’t be far from a bathroom. (*ALERT-ALERT* goes my brain!)

“Mom, did you call Dr. Bates and tell her? When we went to see her you and Dad said the nausea was only first thing in the morning but was gone once you were up and around. She said if it increased or lasted longer into the day to tell her because she would switch you to the other medication to see if it worked better.”

“Oh, well I guess I need to track it better and call her.” I tell her that no one is going to have a problem with stopping at restrooms, we are women after all and stop frequently as it is. I also remind her that the day is about being together and we have all day and are in no rush. (Silence – deafening silence on the phone) I tell her that if she doesn’t really want to go I understand but if she is not going because she doesn’t want to be an inconvenience than I think she should reconsider. (Silence still.) I ask if she is still there. She is but she is crying. I ask her if she is okay. She says yes but I know she isn’t. I can still hear her crying and my own tears start. I’m doing the best to keep the sound of them out of my voice but I know it won’t last long. 

I tell her it’s going to be okay. I tell her I love her. She sniffles and tells me she loves me too. I tell her I will pick her up in the morning and we will take our time and make the trip as stress less as possible. She says she will be ready in the morning. I remind her I will bring lots of low carb, low sugar, high protein snacks for her to nibble on throughout the day and that hopefully it will combat the nausea and give her some relief. Mom tells me again how much she loves and appreciates me. We hang up the phone and I lose it. (This is where I hear the words Oh there goes Gravity as I completely fall apart.) 

I find myself wanting to throw an adult temper tantrum and kick and scream at the world. I WANT MY MOTHER BACK! I don’t want to go through this. I don’t want to hear my mother crying because she is afraid and ashamed of what is going on in her life. I want everything to go back to what it was 5 years ago when everything was okay. I just want my mommy….. and I’m angry at the world that I am losing her in such a horribly painful way. I don’t think I’m strong enough for this. No, let me rephrase that….I don’t want to be strong enough for this. I want to wallow in grief and despair. I’m so devastated right now I can’t even concentrate on the “world of what I thought was important” a few minutes ago even though I have too many responsibilities not to. Oh dear God, please, please help me!

The Winds of Change

I got a call today from a very beloved friend. The call was to inform me that they were making some changes in their life and would be moving several hundred miles away. This person is one of the few people that I open up to. One of the few people that I feel I have a deep heart connection with. I understand all the reasons that they are going and over the last year I have been encouraging them to step out into their power and to live the life they really want to live. I support them fully in this journey but that doesn’t mean that I am emotionally okay with the separation that is to come. I think the appropriate term here would be heartsick.

When I got off the phone with them, I spent an hour crying….grieving the loss of who they are in my life, the role they fill and the hole their leaving will bring to my life. Suddenly I realized that the emotional ocean I find myself trying to swim in is familiar. I recognize it now because it is where I have lived for two and a half months in regards to my mom. Its a burning desire to rant and rave at the world for being unfair and to wallow in self-pity that this is the place I find myself in. Its an awareness of inevitable change that I have no control over and an acknowledgement that I will someday lose what was.

That being said, I understand that life simply can’t stay stagnate and that I don’t really want it to. After all, when life quits changing isn’t that called death? I’ve been hearing reports of how well mom is doing, how the medication she is on isn’t giving her any ill side effects and how people are seeing positive changes when they are with mom and that makes me happy. It really, truly does! But I fear I can’t fully embrace it. I’m too afraid to open myself up to hope only to discover that it isn’t real.

I know the inevitable winds of change are blowing and somehow I must find the courage and the emotional strength to follow those winds, where they may lead.

 

In the beginning

First off, let me introduce myself, my name is Trina and I am 43 years old. I am happily married, mother of three amazing young men and one sweet step-daughter, Nona to two grandchildren, sister to one older brother and one younger brother (plus spouses), and daughter to two wonderful, loving parents. I decided to start this blog as a place where I can vent, rage, cry, laugh and in general have an outlet to deal with my emotions regarding my mother’s ever increasing memory loss.

Now let me introduce my mother…her name is Amy and she is 67 (sorry to divulge that to the world mom). Quite simply she is my best friend, my sounding board, my anchor in a crazy world and suddenly that anchor is being pulled away bit by slow bit and I find myself adrift in a world of rioting emotions as I face the reality of my mother entering the world of dementia.

Let me start by saying that we are at the beginning of this journey together. My mother is the same amazing woman she has always been with the exception that more and more she can’t remember things. A couple things to note: I come from a large extended family and we are very close knit. So over the course of this blog, I will be introducing many family members, our interactions, their words and most likely my interpretation of how they are processing this journey we all find ourselves on with mom. *Side note – I don’t claim to “know” what is going on personally for everyone else in my family – so again everything disclosed in this blog is my personal observations, thoughts, feelings and perceptions. Second thing to note: I am a deeply spiritual person and some things I may discuss in this blog are going to have a spiritual perspective and some things I say or believe may seem “out there” to other people but, quite frankly I don’t really give a damn. If you don’t like it or believe like I do – don’t read it.

So, since this is the beginning I figure it is best to begin at how this journey got started.

2010 – early summer: My Aunt Sharon (my mom’s older sister) had called me discuss the fact that my mom was starting to forget things, often enough, that is was beginning to concern her. She wanted me to talk to my mom about going to see the doctor and getting checked out.

2010 – late summer: It took my almost two months to work up the courage to actually talk to my mom. I took her out and spent the day with her and toward the end of the day I broached the subject with her. She was in mid-process of changing doctors and I asked her to speak to her new doctor about the occasional memory lapses. She agreed she would.

2010 – early fall: After several times of checking to see if mom had gone to her new doctor appointment only to be told she hadn’t scheduled it yet she finally tells me she went. (Thank God! I think to myself.) “Did you talk to the doctor about your memory?” “No, why would I do that?” (Insert total disappointment here as I realize she has completely forgotten our conversation and that she promised she would talk to the doctor). I remind her and she plays it off as if I have nothing to be concerned about.

2010 – late fall: big family get together for the women in our family takes place and everyone realizes that something is definitely going on with mom. This is the day I call the pressure point. This is the day that everyone in my family from aunts, uncles, cousins, siblings, nieces, nephews and children start talking to me and looking to me to “talk to mom” about this issue. Now, don’t get me wrong…I love and adore my family but that was a huge burden to bear, knowing everyone was looking to me to do something about the situation. Perhaps they weren’t but actually expecting it of me but it sure felt that way.

2011 – early part of the year: We are all just kind of floating in a status quo position and no one is really talking about what is going on with mom but the memory lapses are starting to get a little more noticeable.

2011 – midsummer: My older brother Kevin and his wife Kathy and my husband Ray and I manage to get away from the kids and head over to mom and dad’s place for adult conversation. My plan, bring up mom’s memory issues when I have support there and Kathy who is a nurse and has been asking around to her colleagues about options for healthcare relating to memory loss. Long story short – we basically get told that mom is taking some homeopathic pills that are helping tremendously and that essentially they are grown adults and they can take care of themselves. It was a nice way of telling us to butt out of their business but it was a definite shut down of communication.

2011 – early summer 2012: It seemed for awhile that mom got better and was improving. My theory now is that mom and dad got better at hiding what was going on. Not that I think they were hiding it consciously but I think they were trying to deal with it privately and not concern the rest of the family. Episodes of mom’s memory loss start to come to the forefront again and they are much worse now. In the meantime, all the family is talking among ourselves about mom and how someone needs to talk with Dad but no one is quite willing to face my Dad when is angry.

2012 – July: So…the fourth of July is a big family gathering and as it ended up this year….a terrible day for my mom with her memory. It was apparent to everyone that mom was not remembering things within 15 minutes of them happening. I went home and sobbed. I spoke with my Cousin Kim (Aunt Sharon’s daughter) and she told me that my Aunt was getting ready to say something to Dad, even if it meant he was pissed off at her forever. My cousin also said that she was in the same frame of mind. Something had to be done. Something had to be said. (My internal voice here says, “That means be the responsible daughter and do what needs to be done”). So, of course, I spent almost three weeks crying over the injustice of it all and the absolute fear of talking to my Dad and having him angry at me.  What is my course of action? I went into meditation every night for a week before our next big family get together on July 21st and set the intention of going to talk to my Dad as spirit when I slept. My Dad and I journey when we sleep so I knew it was possible and I chose the “easy way” hoping it would somehow open the door of opportunity to talk to Dad when I got back from my work trip at the end of the month. Instead, an opportunity opened up at the family get together and when spirit told me to go talk to Dad I did. It was the easiest conversation I have had in this entire process so far. (Daddy, some day I will tell you how much that conversation meant to me) The bottom line…we all wanted mom to get help and Dad was on board with us insisting she go to the doctor.

2012 – August: I got back from my work trip, expecting to make a doctor appointment and having to force an angry mom to go only to find out that Dad had talked to Mom and they had set a doctor appointment. I went with them to the doctor appointment. I will say that it was hard to watch mom struggle to answer simple questions from the doctor. It was even harder to hear Dad asking if he had somehow caused this by taking over the major responsibilities of the household once he had retired. So….the doctor talked to us about what was going on. She ordered a series of tests and now we wait for the results. We should know the results on August 28th. In the meantime I have talked to family members and family friends, explained what is going on and where we are in the process. I have spoken with my brothers and we have set up a family meeting a few days after the final results of the tests are in to discuss the future and how we proceed….and, I have been grieving for two weeks over the realities of the journey we all find ourselves suddenly on and what it means to me to know I am slowly going to lose my mother.

My final words for this blog post: I think it can all be summed up in my mother’s words to me as we left the Doctor’s office after the first appointment. She reached her hand out to me and as we clasped hands she smiled at me and asked me if I was ready for this journey with her. I smiled at her and said, “I’m as ready as you are.” Together we walked hand in hand out into the sunshine. I plan to walk hand in hand with both my parents through this emotional roller coaster of a ride called life and this new journey we are on together called dementia. I love you mommy and wherever this road takes us we will go there together.

Amy/Trina, Mother/Daughter, Best friends