Hospice/Palliative Care

This is one of the hardest posts that I have had to write; the last  several months have been a blur with a mix of emotions being mad at God, frustrated, discouraged, sadness, fear, anger, anxiety, the list goes on and on.  Greg has continued to decline to the point that we have decided to get hospice and palliative care involved.

Greg started having some problems once he entered the nursing home, he would see himself in the mirror and start yelling because he didn't recognize himself, he would also pace the floors day and night until he would become so exhausted that he would simply sit down where ever he was, thus resulting in me getting a phone call saying he had fallen, when he really hadn't, he had just sat down because he had worn himself out. It came to the point where his safety and the safety of the staff at the nursing home became a concern so he was admitted to the Mental Health Unit at the VA Hospital where they adjusted his medications and he is now on the Community Living Center (CLC) at the VA. He is still having issues and is now not eating or drinking very well, has lost a significant amount of weight  and is over all continuing to  decline.  So we made the decision to put Greg in Hospice/Palliative Care.




Over the last few years Greg has slowly been taken from me, Trevor,Nich,Elliot,Bryce, Kiefer, Bobbi, Nikki and Walter, little by little,  piece by piece  to where he no longer knows any of us; although we do  occasionally get a great big grin when we mention specific names or things and he will speak clearly and tell you exactly what is on his mind.

It has been emotionally and mentally exhausting to watch the man that I promised to love forever, for better, for worse, in sickness and health, who helped me raise our sons, who has taught me so much about living life to its fullest, who was young and youthful and acted like a young adult himself  become a shell of the man he once was. Greg is here but  not here, he seems far away. It really is hard to put into words how it feels to lose someone who you have loved forever, to see them drift away from you, to see them become lost in their own world and to have to watch your children and grandchildren lose their father and grandfather.; to feel totally helpless.  

But one thing that I have been taught through all of this is what unconditional love is; through 37+ years of marriage I have seen and experienced the best and the worst in Greg, we been through many happy times and many very difficult times and I would not have wanted to experience this life and all its adventures with anyone else by my side. Although it won't be easy to let Greg go; it's never easy to lose someone you love, I do know that he will be healed and whole and in the arms of his loving Lord and Savior and welcomed by many people who also love him. 

Mixed Emotions

It is with very  mixed emotions that I write the latest update on Greg. 

In the words of the  song Maybe It's Okay by We Are Messengers

"Maybe it's ok if I'm not ok
'Cause the One who holds the world is holding onto me
Maybe it's all right if I'm not all right
'Cause the One who holds the stars is holding my whole life"


I knew that this day would come but did not know how  emotionally draining it would be; it has been a crazy, hectic few months with lots of prayers by friends and family  and  discussions with Trevor, Nich, Elliott, Bryce , Kiefer, Bobbi and Nikki (Kiefer's fiance); but we have decided it is time to place Greg in a nursing facility. 

Greg has continued to decline and is now requiring more and more care, so I decided to started placing calls to a few nursing facilities, basically to see what was available and to see if I could find out approximately how long the wait for an opening would be. My hopes were not very high. I had been praying for God to give me wisdom to make the right choice and to make it very clear to me that placing Greg in a facility was what we were supposed to do. I  found 2 facilities with openings within 3 days. As many of you know to find one opening is unheard of but to find 2 is really almost impossible. One opening was in Canton at the Canton Good Samaritan , the other opening was at Tieszen Memorial Home in Marion. 

After having a family meeting we decided to place Greg in Marion; I know the facility (my mom is there), mom has had excellent care, I have gotten to know a lot of the staff and am impressed with their caring attitude and the care they give the residents.

It will be an adjustment for all of us but will probably be harder on family then on Greg. The plan is to admit him and then not see him for 5 to 7 days so that he can get used to the facility and their routines. That will be the hardest part because Trevor, Elliott, Nich  and myself are used to seeing Greg everyday, but we all evidently  find our "new normal" just like Greg will. 


Through all of this I have learned many things but a few that stand out are: I fully understand what unconditional love is, I have seen Greg at his best and at his worst; but  no matter what has happened I still love him and always will, "for better, for worse, in sickness and in health, 'till death do us part"






I CAN do all things through Christ who strengths me. This one applies not only to me but to the boys . I have seen Trevor and Elliott get up with Greg at night so that I could get some  sleep so I was able to go to  work the next day. Trevor  gets Greg up every morning and gets him dressed so that Nich; in spite of the crazy, hectic life that he and Bobbi have, can take Greg to Ceili Cottage. Walter who is always so loving and gentle with Greg. Bryce, Kiefer and Nikki who will give up a Saturday morning and sit with Greg so that I can run errands, go to coffee with the girls or just have some me time. Elliott who will pick Greg, if I call him at the last minute and ask. I have seen the boys do things that I didn't think they were capable of doing. 

I am BLESSED with an amazing family, coworkers, friends and everyone involved in my life because without YOU I could not do this crazy thing called life and still keep my sanity. 










 


                                                  

Seasons Change

Labor Day weekend had all of our family, all 10 of us,  gathered in a cabin near Lead in the Black Hills. The weather was gorgeous; warm during the day and cool at night. All in all we didn't do much; some of us did a little hiking, Walter, Nich and Bobbi went to see the Mammoth site (at the request of Walter) and the rest of us joined them in Hot Springs for swimming at Evans Plunge. The boys gave mom a break and took me to Deadwood to walk the streets and have a few drinks; other than that we stayed at the cabin and enjoyed each others company by either sitting on one of the decks, in the hot tub or in the family room by the fireplace. The boys played some games and taught Walter how to play Risk, exactly what a 5 year old needs to learn to play. It was a short, quick weekend that was very enjoyable, at least for me it was nice to do basically nothing but sit and relax; sitting and watching the family interact with their dad/dad-in-law/grandpa . But sitting and relaxing isn't always the best thing for me because I start thinking; Will this be the last family vacation with Greg?, What does the next year/6 months/ 3 months/ 1 month hold for us? Greg depends on me to do so many things for him, how long will I be able to keep doing the things he needs?

After all the relaxing and thinking we returned to reality, jobs and responsibilities. Fast forward a few weeks and it was time to once again attend a care conference for Greg. These are held approximately every 3 months and update me, or whoever attends with me, on how Greg is doing while attending Day Break. I knew that he was declining and everyday when I picked him up he would be sitting in the same recliner off in another room by himself. This was mentioned in the care conference and they approached me with the idea of moving  Greg to the Ceili Cottage or the Cottage as they call it.

The Cottage is still part of Day Break but is actually a house which is located by Sanford Hospital and is specifically for people with Alzheimer's and other types of dementia. They have more one on one care and the staff members are nationally certified so they are  dementia-care specialists. There is only room for 8 clients and they had an opening and thought that Greg fit the criteria to attend. So on October 8th Greg started at the Cottage. So far he has done amazing and has come "out of his shell', he participates in activities and seems to be doing well. The Cottage is open 8:30 to 5 which means that the boys have gracious pitched in and helped me out once again.(I guess God knew what he was doing when he gave me 5 sons) I  work 7:30 to 4 so Trevor now gets Greg up, dressed and fed and then Nich, Elliott or Bryce takes him to the Cottage and I pick him up when I get off. This means that my gym routine has gotten pushed back to 5:20, which means that Trevor and Elliott watch Greg which I go workout for a half hour. I enjoy going to the gym and it has helped me not only physically (with weight loss) but it has also helped with my mental well being, so it is something that I really don't want to give up. Plus the workouts are fun and entertaining. Kiefer has talked to his manager at work and his manager has agreed that he could take time off to take Greg if needed and Bryce's friend, Dut has also offered his help if needed, as have many other friends. So far what we are doing is working and keeping Greg in a routine just makes days go better for everyone involved. I realize that Greg will continue to decline as that is just the nature of this horrific disease, but for right now we'll continue with this plan until God leads us to the next step. Because every time I think I'm in control He manages to steer the boat in a different direction. 

Love Bears All Things

The Trumbull Life in a nutshell is hectic but blessed by God's grace and goodness. I know I haven't written in a while but I always have these thoughts running through my head and decided it was time to update everyone. 

#1  Greg is requiring more and more          care and help with things. He              needs help with showering,                  dressing and being reminded of            where things are.

#2  He is still independent of some things eating and the bathroom, although          he needs to be re-acquainted with where things are, especially if we are            somewhere besides home. 

#3  He is content to stay home, nap on the couch  and watch movies all day,            I've seen Secretariat so many times I can recite  it by heart.

#4  He will go to Kiefer or Nich and Bobbi's houses (yes Kiefer bought a house)        but he doesn't like be gone real long. He's become a home body.

#5  He still goes to Day Break (adult day care) every day while I continue to            work.

#6  The boys, Bobbi, Nikki (Kiefer's girlfriend) and Walter are a big help when I         need to go somewhere or do something.

#7  He sleeps all night, if fact he usually goes to bed between 8 and 9 and              sleeps until I wake him up.

#8  He does not know my name or the boy's names any more but will tell me          almost daily that he loves me. 

#9   He is the most quiet and gentle man you will ever meet. He rarely talks             due to the aphasia and we play lots of charades to try and figure out what         he wants/needs.

#10  One of these days he is going to turn into a bowl of tomato soup, as that            is what he wants to eat for every meal.  It's funny how his food tastes                have changed. He used to want pizza every meal.

#11 We get to see the family almost every weekend.

#12 He likes to go to church on  Sunday. He Loves to listen to Bobbi sing and           watch Nich play the guitar and if we're really lucky we'll get hear a drum           solo after church from Walter.

#13 Things are tough, especially on me, it breaks my heart to watch Greg                  become a shell of the man he once was but I know that God is here and            His plans are different than mine.

#14 Greg is on the waiting list at a few assisted living facilities here is Sioux            Falls. The wait can be quite long so the decision was made to but him on            the waiting list; if an opening does become available we can always                    decline and wait for the next opening. I, with the help of the boys                      decided it was better "safe than sorry" and to wind up needing Greg to be          placed immediately and then have to pick a facility that wasn't acceptable. 

#15  God's blessing through family, friends and coworkers are what keep me              going. For I know that I couldn't do this with out you!!

God's grace and plan is more than sufficient enough to help me continue to do what needs to be done and get me through the long days and sleepless nights. I'm am thankful that I can be Greg's caretaker, he has taught me so much about taking care of your spouse "for better, for worse, in sickness and health, until death due us part."

"It's Ok He's Still Grandpa"

A few weeks ago I was asked to pick Walter up from daycare and after picking him up and loading him in the pickup, I told him that we needed to go pick Grandpa Greg up at Day Break. ( I pick up Walter first because that's the easiest way with the flow of traffic). After buckling Walter in his car seat and starting down the road, he started in with his inquisitive 100 questions. Why does Grandpa Greg go to Day Break? Why does he have problems with his memory? What is Alzheimer's? Have you ever tried to explain Alzheimer's Disease to an all to smart for his age 4 year old? I did so to the best of my knowledge with 100 more questions being asked and in the end Walter stated

"It's OK Grandma he's still Grandpa and I still love him."

So as I sat reminiscing and watching Greg the other night I was reminded that Greg is still Greg, even though people don't see him that way. People tend to shy away from Greg when we are out in public, which is probably why Greg chooses to stay at home or when we do go out in public he chooses to stay by my side or by the boys' side; because that his place of security, familiarity and he can talk to me and the boys. People don't know what to say to Greg or how to interact with him, therefore they tend to ignore him. You can still talk to Greg you just need to be prepared to talk about the past or he might surprise you and talk about what is going on the the present. Just remember that he is still the Greg that you have always known and loved. He hasn't changed; it's the disease of Alzheimer's that has changed him. Greg is still the same mellow, lovable guy he always was,  he would still ride bicycles if he had someone to ride with. The reality is Greg is still Greg, he still hears and sees all that is going on around him, he still wants to engage with those around him, the disease is what has changed him and made him the way that he is now.


In addition to Greg being who he is I am still who I always was, yes I am more attentive to Greg's needs, just because that's who I am, I don't like to see him struggle or see anyone struggle for that matter  ( I guess that's the nurse in me).  I do not look at Greg's Alzheimer's as a burden but as an opportunity to use the nursing skills that I have acquired to care for the one that I love and vowed to care for in "sickness and in health 'till death do us part." I still like to be involved in other things and like to be asked to go places and do things with friends and the girls, yes I might not always be able to go but don't be afraid to ask; the answer could very well be yes. I'm still finding my way through everything with Greg and sometimes get bored just sitting at home, although that rarely happens. I'm also very willing to answer questions about Alzheimer's Disease, if I don't have the answer, I'll do my best to find it.                                                                  

I'm Fine

So this last month as been a rather trying one. It has had many, many ups and downs, highs and lows, valleys and mountains, deserts and rain forests.

I might be a great caretaker but I'm poor at taking care of myself, I'm good at hiding things, good at saying I'm fine, (just ask the people that I work with or that have known me for a while) even when I'm not; I've been saying it for so long that I think I sometimes say it without even realizing that I say it.

The whole problem being that I'm not fine. It took a major argument with a family member and saying some  very, very harsh, nasty words (the kind you wish you would could take back and would have never said) with a very dear, close friend to make me realize that I AM NOT FINE.

I much as I hate to admit anything, I am suffering from depression, anxiety, insomnia, insecurity, the why mes, why our family, why Greg, and on and on, I have become Greg's security blanket, his anchor, the person that he always has eyes on when we are out in public. But to be there for Greg, my parents and who ever else depends on me; I need to learn to take care of me because if I don't take care of me, I can't take care of Greg or anyone else. I'm no help to anyone.  So if you ask me how I am and I start unloading on you I apologize in advance.  And if I say I'm fine you have my permission to inquire further to see if I really am fine or not.

Help Be the "Fixer"

 

 The other morning as I stood in the shower a wave of panic come repeatedly over me, "Why God why, why us, why our family?????"  These thoughts ran over and over in my mind as I stood with the warm water, that had now turned cold, running over me. Understand that normally my time in the shower is spent letting my anxieties, cares and worries wash down the drain with the soapy water. It's my time to be care free and worry free. So why was this morning so different.

Why does God let things happen to some people/families and not to others? Is it because some of us have more faith, some of us can handle it better than others (definitely not me) or is it dumb luck or bad luck  or is it just because of the choices that we make in life. The choices that we make in life could account for some things, because of the free will that God gave us but I don't think that it accounts for everything. And it's a question I really don't have an answer for and probably never will. But it's one that has now stuck with me for days. I believe (you know how you're not sure if it's Him or your imagination) He told me  to have patience and endure. These two things for me are not easily done. 

As my friend Anne pointed out to me a few years ago, I'm a "fixer", I do not have patience to wait, I like to fix things and fix things now. So for me knowing that there is not a fix/cure for Alzheimer's and that I need to have patience and endure fills my days with dread, worry and anxiety. I would much rather crawl back in bed every morning and curl up next to Greg then go to work (basically because I don't particularly like my job  and I'm bored half the time) and because I would rather spend my days with Greg because I know that there will come a day when he will not know me or the rest of the family so there are so many, many things I want to do while we still can. But I also realize that part of my patience and endurance may be to be at my job and endure what is going on there. There are changes coming at my job before the end of the year so maybe that is part of God's wonderful plan. I don't know, but being the fixer that I am I wish that He would let me in on  the grand plan really soon, like yesterday.

So here's the fixer in me coming out, a few months ago I attended a women's conference. The evening was filled with love, laughter and connecting with old friends.  My take away from it was this "I am not the problem but I am the solution" (the fixer). So with that being said I'm going to ask you to help me be the fixer. This year I have started a group for the Alzheimer's walk on Saturday September 10, 2016. Would you walk or donate to "Greg's Memory Keepers" to help end Alzheimer's. We can all be the fixer to end this horrible disease so that other families do not have to suffer. Please, please consider helping. If you have questions please contact me (campnursezo@gmail.com) or go to alz.org/sd    
team name Greg's Memory Keepers. Please consider giving to the walk or come join in September (rain or shine) and walk to raise awareness about Alzheimer's. (Alzheimer's is estimated to be the number 3 killer disease in the US)

The Looooong Goodbye

Everyone Has A Story

As I sat in various waiting rooms at Mayo Clinic listening and watching people, I came to the conclusion that
              "Everyone has a story"
The stories vary in many ways but they all end the same, people are looking for answers to a medical problem and that is why they are at Mayo Clinic. Each story is as unique as the person telling it, some people are very patient while others are more demanding, some have doting family members, while others sit quietly by themselves, lost in their own thoughts. Some like Greg, Kiefer and I are there for only a few days, while others have been there for what seems like eternity (one couple we met had been there for 5 weeks and were very excited that they were scheduled to go home in a week.)

Monday the 8th Greg, Kiefer and I set out on an adventure to hopefully find some answers.  It was cold, snowy and very, very windy, roads were closed, we saw many vehicles in the ditch, including semis. What should have been a 4 hours drive straight east on I-90 turned into a 9 hour trip, getting us to Rochester in a very round about way,  2 hours of which were spent in a traffic jam. God's grace was more than sufficient in keeping us safe and in being able to reschedule Greg's appointment with the physician to Tuesday morning and all the rest of his appointments being able to be rescheduled as well. 

Greg was a trooper while he endured various appointments including an MRI, PET scan, lots of blood work, an EMG and a lumbar puncture (spinal tap). The results of the spinal tap will not be available for 4 to 5 weeks, so we are scheduled to return to Mayo in March. With the spinal tap they are looking for Tau Protein and "CSF markers" for Alzheimer's Disease.

The conclusion: the physician is fairly certain Greg has Early Onset Alzheimer's Disease with aphasia, the fluid from the spinal tap will give us the definite diagnosis. Aphasia is simply an impairment in language, that is why Greg "grasps and searches" for words and why he is so quite and hardly talks.

What it means: Greg will hopefully not have the behavioral  problems that are associated with Frontotemporal Dementia (FTD), his short term memory loss will continue to decline and yes he will forget his friends and family. Is it genetic????? We will probably never know, the only way to find out is genetic testing and without doing the genetic testing we will never know. We've been told that genetic Alzheimer's Disease is extremely rare. 

Is the correct diagnosis: we can only trust the physican that we saw and all the testing that was done. I did find out that the physician that Greg saw is "the best physician at Mayo to see for Alzheimer's" (this came from several nerses and staff members) and he deals espically with Early Onset Alzheimer's. But the only certain way is to do a brain autopsy after Greg passes away.

So for now we keep doing what we have been doing. Enjoying the days that we have together and trusting in the Great Physician for only He knows what will happen. 





 
 

Caregiving

 



 Being a caregiver; what does it mean?


It's like being on call 24 hours a day, 7 days a week, 365 days a year

It is repeating the same answer to the same question numerous time,
Being the chauffer, because Greg can't drive any more,
It's taking time off to go to appointments,
It's working full-time and then coming home and working more,
It's reminding Greg to do things,
It's doling out medications,
It's paying the bills,
Taking the car to get serviced, changing the oil, getting new tires(which I haven't had to do thanks to the boys giving them to us as a Christmas present),
It's making all the financial decisions, medical decisions, quality of live decisions and some day end of life decisions,
It's living with uncertainty,
It's learning patience,
It's trying not to resent people or the disease,
It's trying not to blame Greg for everything that has happened or is going on,
It's learning to live on less sleep,
It's learning to grieve the life that Greg and I once had and to mourn the loss of the Greg I once knew,
It's learning not to feel guilty because Greg has the disease and I don't,
It's learning not to bottle up my feelings (so if I let you have it someday, please forgive me),
It's worrying when Greg gets lost,
It's holding Greg's hand so he won't get lost,
It's learning to take care of me,
It's all of these things and more.......

BUT most of all it's  ........
TRUSTING in God and the challenges that He has set before me,  because He is there is the mist it all,
SPENDING time on my knees, PRAYING when the situation becomes so overwhelming that I feel like I'm sinking
THANKFULNESS  that Greg is still with us and that the boys are able to help with dad
ASKING for help when it's needed
KNOWING that I'm not in control, but God is and that is all I need to get through the day.

Being Scared (written by Kiefer)

For the first time in a very long time, I can say I am scared. As many of you know I am the silent, tough type and in my family you hardly hear me speak
my true feelings about something. Even writing this, letting everyone know I am scared to lose my father is hard. Being scared it's a bad thing, it just letting you know you care about something so much you never want to lose it. And for me the thought of losing my father never came to mind until
I found out what was wrong with him. So now not only do I have to learn how to live with him slowly forgetting things. I also have to learn how to live with losing him.
My dad and I weren't very close growing up. I personally thought I would have more time to fix that. But now it feels like it will never change. Which is hard for me. Cause I was never really close to his side of the family, so he was the only way to see what  they were like. I want to ask him so many questions about his parents, cause I never know who they were. But now I feel like he may not
remember the little details about them that I so dearly want to know.
The moral of this, is that if you are scared to lose someone. Spend time with them before it is too late.
Make memories and hold on to them no matter what. Ask them the questions that are burning a whole in your head. Fix the things that cause fights. Make sure that your relationship with that person is everything you ever wanted it to be. 'Cause one day you may lose them, so do things before it's to late. Otherwise you will be sitting here like me wondering what you could have done differently in your life to make things easier.
But most importantly no matter what happens, make sure that the person you scared to lose knows you LOVE them.
That is the MOST important thing you can do. Tell them everyday, one day they may forget.

Held

So I'm sitting her in the hospital room with my mom, passing time as her sleeps after having an ERCP done because her common bile duct was blocked with all kinds of yucky stuff. And I think to my self how thankful I am that my parents now live in Sioux Falls and not Custer as they did three years ago. If they had not moved I would have spent 7 hours driving to get to her and worrying the whole way there.

Why is it that when something "bad" happens we immediately get fearful, instead of praying and trusting God that He is in control. Is it because it's human nature or is it because we say we trust God but don't know how to do it? For me it's because I don't know how to truly trust God. I try to but it's difficult and hard because I'm so busy trying to hold everything and everyone together, to be strong because that's what mom's ( who are caregivers) are suppose to do.

It's been a busy couple of days, especially with the snow, I've been spending time at the hospital plus driving my dad back and forth because I don't trust him on the roads. Tonight after I dropped dad off at his apartment and started driving toward my house to pick up a few things before heading back to the hospital for the night the song "Just Be Held" by Casting Crowns came on the radio. I've heard the song numerous times but tonight the words became more evident that they had ever been before.

All I need to do is let go and let God HOLD me. Take my eyes off the storm and everything that is going on around me and know that I know He is still on the throne and all I need to do is set my eyes on the cross and the One who is in control. God's arms are hugging me tight in the mist of everything. I just need to accept His hugs and trust in him and everything will be alright.
Jeremiah 29:11 "For I know the plans"

I pulled in the Hy-Vee parking lot and let the tears flow, like they haven't for a long time, just letting the loving arms of my Savior hold me tight . What a wonderful feeling to be held like I've never been held before.

Hold it all together
Everybody needs you strong
But life hits you out of nowhere
And barely leaves you holding on

And when you're tired of fighting
Chained by your control
There's freedom in surrender
Lay it down and let it go

So when you're on your knees and answers seem so far away
You're not alone, stop holding on and just be held
Your worlds not falling apart, its falling into place
I'm on the throne, stop holding on and just be held
Just be held, just be held

If your eyes are on the storm
You'll wonder if I love you still
But if your eyes are on the cross
You'll know I always have and I always will

And not a tear is wasted
In time, you'll understand
I'm painting beauty with the ashes
Your life is in My hands

Lift your hands, lift your eyes
In the storm is where you'll find Me
And where you are, I'll hold your heart
I'll hold your heart
Come to Me, find your rest
In the arms of the God who wont let go

A Son's Perspective (written by Kiefer)

As many of you know this is my mother’s  blog. But a few weeks ago she asked me if I would write one for her. I told her I would think about it, as I didn't know what to say. I still don't. But I thought I would give it a try.

Living with a father that will one day forget who you are is the hardest thing I have had to face. Which coming from me is saying something. I have had to face many hard things in my short 21 years. Such as not knowing family members, seeing family members die too young and being taken from your family without a say.  There is nothing more terrifying than knowing your dad will not remember you one day. But even more painful than that, is knowing my future kids will not know him the way I will remember him.

Some people say you need to trust God and know that he has a plan. Which is very hard for me to do, as I do believe there is a God but he is not the one everyone thinks he is.

I guess the easiest way to deal with something like this is to find inner peace. As humans we want everything to go perfectly but that will never happen. So the best thing to do is enjoy the moments you have with someone, the good and the bad. And always remember that people will come and go from you life. But memories are forever. As far as the future kids go, I'm going to do my best to be how my father was with me. Always there and always making sure they have everything they need. If they ask about their grandpa, I will spare no detail and tell them how great of a man he was. He dad is my hero and I am scared to find out what life without him will be like.