Disclaimer

This is dementia. It's not just a memory problem.
What you read in this blog is purely my own personal experience in dealing with Lewy Body Dementia every day.

This is not meant to offer any medical or legal advise.
I have no professional training in care giving or experiences in formal writing.
I'm just a woman that loves her husband deeply and wants to provide him with the best quality of life he can and chooses to have.
My prayer though this is "Lord, What am I learning from this; how can I use it help someone else and to glorify You?"
If just one person finds comfort in this public blog. I will feel like it was a success.

Showing posts with label Anger. Show all posts
Showing posts with label Anger. Show all posts

Saturday, January 5, 2013

Kat in a bag

Somebody dropped a young cat off in Sister in law's neighborhood.
It found it's way to her home and to her dogs food and decided to take up residence.
SIL, not being a cat person, needed to get rid of Cat so she called me, Cat Lady, and I agreed to take the cat if it could be caught.
A few days later Brother In Law shows up at the house, bright and early wearing gloves and carrying a pillow case with, 
you guessed it, 
Cat inside.
We decided to put the pillow case down next to the cat food and open it.
Sure enough as soon as that pillow case was opened, Cat jumped out, straight up a wall, across a window screen, off the porch and shot across the yard into the woods.
I think the cat was black.

I called and called for it throughout the day, hoping it would come back or I would see a glimpse of it.
I finally gave up, hoping Cat would come back to the food once it settled down.
A couple of days later it did. Very nervous but hey, if your life started out as a drop off then a pillow case trap and dump, you would be nervous too!
It's been a few weeks since then, it finally settled in to a box I set up for it and food. It's even friendly enough that I can pet it and lately it will run up to me for attention. Every now and then it will try to get inside the house. I think it likes it's new home and we are all adjusting.

You're saying to yourself, “This has NOTHING to do with caregiving, Kathy!”
Ahhh, but read on my dear friend and you will see.


Yesterday Hubby had a Mental Health Dr appointment. The appointment I've been dreading because Hubby had decided he wanted to talk to Dr about placement.
Over the last few weeks Hubby's desire to leave has increased. He even decided to stop taking ALL of his meds. Just like that. So he did.
I can hear some of you gasping, but think for a moment, what is is REALLY going to do that's worse than dementia?
I didn't fuss or insist. The inner struggle to hold on had to loosen it's grip. It is such a very difficult thing to do.

Some of the meds he takes such as Depakote relieved his anxiety and anger issues he experienced as a result of his PTSD. Since stopping I haven't noticed an increase with those issues any more than what he was already experiencing before stopping. I know there is nothing physically he can do to anyone or himself and I can walk away when the hurtful words come.

The Galantamine he was prescribed when he was diagnosed with his Lewy Body did such a wonderful job at the beginning that I wanted to kiss the makers. I saw such a positive change in Hubby's cognition and as time went on, the dosage was increased to it's max and although I was not seeing any positive's from continuing that med, I was afraid to have it stopped because I saw what it did and was worried about where he would be without it. Apparently it was no longer effective because I have not noticed any sudden(?)different declines in cognition.

I said in an earlier post that Hubby and I have had some serious talks and we have cried separately and together over some of the things he is experiencing.
Because of these emotional breakdowns I was able to talk Hubby into taking his antidepressant to help him feel a little more stable. He agreed. Because of the pain he experiences in his back and neck he also agreed to take his pain meds. I said there was no reason for him to suffer with pain.

At the Dr appointment Hubby mentioned that he felt a little more shaky. Part of his LewyBody symptoms is shaking. When asked he said he thought more about death and dying and he had no thoughts about how to make things better. When I was asked how he was I explained about the meds stopping and how Hubby had been angry and sad and how he wanted to leave even if it meant placement. Hubby agreed.
The pillow case was opened,
I think my brain exploded and leaked out of my eyes so I wont be able to tell exactly what all conversation was said.
I was asked if I had spoken to the Social worker. I jumped out of the pillow case, straight up a wall, across the window screen and porch and off into the woods, just like Cat. I shook my head, I can't talk to her.
MH Dr was so supportive. He said the same things I did, Nothing was permanent. If you voluntarily check in you can check out. Lets just get the info we need to make an informed decision. There is no right or wrong with these decisions. We are doing the best we can and it's smart to think ahead.
He said all the things I have said to myself and in support of others. But I wasn't coming out of the woods.

We all agreed that it was okay to have stopped the meds if that is what Hubby wanted but he was keeping them active in case Hubby changed his mind about them.
Side note: I LOVE my team! Always having Hubby's best interests at heart.
MH Dr. offered to have the social worker call us to get the info we would need for placement should we choose to go through with it.

So, right now, there the food sits on the porch and I'm waiting in the woods, just like Cat. Afraid to move and hiding out.

We all think we know exactly what we will do in any given circumstance but until you are actually faced with it, we just do not know how we will react. Right now as long as I don't have to think about it too much all is well. But in those still quiet moments, or when Hubby is having a moment those feelings rush in and overtake my heart. I keep reminding myself that my plans are not God's plans. He has a bigger and better plan for me and for Hubby. I need to trust Him and follow keeping my eyes on Jesus and not on the storm. It looks like a pretty big storm brewin. So I'm in prayer that the Spirit calms my heart and clears my head so I can walk out of the woods, like Cat. 
I know when I do I'll find a warm box and a bowl of food. 
Just not today though.

Wednesday, December 26, 2012

Next Steps

I hope this makes some sense because my thoughts and emotions are so scattered lately I feel like Hubby and I are in an emotional blender.

I've been avoiding, for the most part, the caregiving www.
I've struggled to support myself and Hubby and unless the support was "easy" to give and receive, I've remained silent.
Unless I was sure what to ask for or offer, I've remained silent.
To the majority of my family and friends, I've remained silent.
Now is the time to break the silence because the silence is breaking my heart.

Hubby has had some serious anger issues. Nothing physical, just verbal. And that's not really the problem since we have lived with his PTSD for our entire married life, I'm used to it. In the past, he could leave or I could suggest he leave and go someplace or I could until he cooled off. But now he feels trapped. Trapped by me, the Drs and his Lewy Body Dementia. He doesn't want to be here. He's mad at me, the Drs, his illness, the whole world.
If I was in his place, I would probably feel the same way.
He's also sad, very very lonely, frustrated and scared. All the things I wanted to prevent for him and have not succeeded in doing right now.
All I can do is watch as he fights with his emotions and listen as he vents his frustrations. Most directed at me and admittedly they hurt but I understand where they are coming from so I try my best to ignore the feelings that come because of his words.
What can we do? How can we fix this? We are maxed out on meds and some of my big fears are more would make him "drugged" something neither of us want. He's sick of taking pills anyway and I don't blame him.
He has had some very lucid moments and we have talked about his dementia, his feelings and a few of his fears. Then HE suggested that perhaps placement would be the best.
Oh my heart! I HATE Lewy Body Dementia. I hate that he can have these moments of clarity. I HATE that he realizes what is happening. I HATE HATE HATE IT!!!

At his suggestion, we have talked Nursing Home placement on several occasions. Sometimes he says he wants to leave, other times he says a Nursing Home is not where he wants to be, but he doesn't want to be here. Some times he says he doesn't want to be a burden. I've tried to assure him that he is not a burden, perhaps difficult at times but never a burden.
He and I have both spoken to our children about it.
I have to add that we are very blessed with the support that they offer us. They may not like the situation but they support whatever decisions needs to be made in the best interest of their father and me. How did I deserve such amazing gifts when I received them?

It took a long time to bring it up to them. Hubby and I both fought emotions about it. We've cried together and separately, I've prayed for and over him. I still fight back tears and it's taken alot of emotional strength to put these words down. Even more when I hit the post button.

I've read more than once that it's never too early for placement when dementia is a concern. But it can come too late.
Late for the caregiver who is stretched beyond their capabilities and health. Late for the loved one who may do something that could potentially be life threatening to themselves or to others.
And if you're already talking about it, now is the time to make the move.
My head knows all of this, my lips and fingers have repeated it to others. My heart wont get on board.

I've tried to find things for Hubby to be engaged in yet he refuses. So, I wonder if a different environment and the company of other people would be in his best interest. At least that way he could refuse to participate or engage with someone other than me.
I'm sure it wouldn't help with how he feels about his illness, the Drs, the situation or me and all of his losses but perhaps with others he could "vent" to, it would help release some of his anger. Maybe he could deal with it better. I don't know the answers. I'm grasping anything I can to get even a small hold on a constantly slipping situation.

Neither of us have decided anything but Hubby wants to talk to a Dr about it. He has an appointment in a couple of weeks.
Confession : His wanting to do this feels like a bit of rejection of me but I have to shake that off and realize, this isn't about me, it's about what's best for him.
I did tell him if he wanted we could tour a facility and nothing had to be permanent so if he did go in and then decided wanted to go home, I would be loading him up and bringing him home.

Please say a prayer for us. We need clarity of mind and sure direction.

Friday, October 7, 2011

Still kickin

The passing of  Hubby's friend must have been extremely difficult for him to deal with.
At least that is how it seems to me after the funeral services.

What a terribly difficult day Hubby had the day after.
Hubby had been wound up tighter than an 8 day clock and has done nothing but try to argue with me ALL DAY!!!

The morning started off with the usual dialog of moving away.
I don't do mornings until I have had a least 1 cup of coffee in silence which I did not get.
It all went downhill as the morning wore on. Enough downhill that I threw my patience away and got huffy with Hubby.
Walk away and shake it off wasn't helping much but I really was trying.

I can hear you thinking, "Why didn't you just go to another room and stay there Kathy?"
Well, when I am out of our room, Hubby comes looking for me.

During this time Brother in Law (BIL) left for church and I forgot to give him his offering and lunch money. I knew he would be covered by other 2 sisters so I didn't really worry he would do without. I was however surprised that BIL didn't remind me of it before he left. It's not like him to forget things like that.
Once he returned, Other BIL came inside and I met him at the door with lunch money repayment. We laughed about my goof and Hubby walked into the kitchen and asked if his sister was out in the car. Other BIL said yes and Hubby summonsed her inside. Other BIL promptly informed her and she came in.

Now sometimes, I consider that I'm a smart woman so I left the room, I was pretty sure what was coming and I was not mistaken.
Hubby wanted to know if his sister would explain to him why he had to be "here".
SIL tried to explain that this was his home and he was getting wonderful care, all the things I have said to Hubby and she was met with the same resistance and anger I have been. She took no time at all to jump right into angry mode and yelled at Hubby then stormed out of the house. It wasn't pretty.
Hubby, angry at his sister, decided I was responsible for turning everyone against him.
UGH I can't win for losing.

But wait! the party didn't end there.

Hubby was grumpy the rest of the afternoon and into the evening.
I ignored, I redirected, I tried soft tones and answers, I tried reasoning ( I KNOW I KNOW but I had to try so stop laughing), I went outside and sat on the porch swing for a long time
I walked away so much I could have worn out my shoes.
Come to think of it I may have because I was barefoot.

Anyway,

I prayed for Hubby to just go to sleep, I prayed for  the night to end, I begged FB friends for prayers, but I did both of those things AFTER I had my own personal melt down on Hubby that resulted in me allowing myself to get caught up in his constant verbal assaults. Honestly though, after a day of it, it can really make your nerves raw.
I won't go into details but my Spiritual Fruit, which are Love, Joy, Peace, Patience, Kindness, Goodness, Faithfulness, Gentleness and Self Control (Galatians 5:22-23) turned into rotting fruit that got my fruit of the looms in a wad and I verbally threw my stinky fruit at Hubby :(
My inner self was having a primal scream that escaped from my mouth.
I am not pleased with myself and terribly ashamed.
I can't take the words back and even though I may be the only one that remembers what happened, it still hurts that I didn't walk away one more time.
It is what it is though.

My prayers were answered later in the night as Hubby finally settled down and I licked all of my self inflicted wounds.
The rest of the night was quiet and  peaceful.

Then the morning came.
Still feeling the effects of beating myself up I made attempts to make nice, but Hubby was still upset.
He even tried to reason with me about why it would be best for him to leave me and move away.

It took a LOT of willpower and a ton of prayers to bite my tongue and keep from responding.
Hubby didn't appreciate that I wouldn't consider his offer to go away, so he dressed, put on his slippers and a hat and grabbed his walker and proceeded to leave me, on foot.
It shouldn't have been comical, but it was.

Doing those things in itself is a change as Hubby has not been able to do many of them, especially use the walker, in a long time.

I never said a word and just let him do what he wanted. I watched as he walked across the room and to the front door. I watched as he walked out the front door and from the windows I watched as he walked to the end of the car.
I was actually impressed he was able to get that far.
It took him a very long time to do it and he rested at the back of the car for a long time. Eventually he started his trek again and just walked around the car to the side deck and sat on the deck swing.
he stayed there a very long time and I ran upstairs to peer down at him and keep an eye on him.
After a while I went to the side door, unlocked and opened it for him.
Calmly I said when he was ready to come inside, this way would be easier for him. I smiled softly.
He eventually came in and we both took a much needed nap.

Outwardly I was gentle but inwardly I am spent.
I feel like I'm walking through a mine field.
My mind never stops so I never feel like I have down time.

I haven't blogged for what feels like an eternity.  I can't get my thoughts organized so not doing so feels a little selfish and I don't want to be self absorbed in Lewy's world.
I'm still enjoying my walking/jogging but I did take a few days off to spend with Youngest Daughter and her Baby.
Youngest Daughter even mentioned I may need to make arrangements for some respite time.
She pointed out that as long as I didn't have to have a serious conversation, outwardly I appeared to have all together but she can tell just from seriously talking with me that I need a break.
She is very correct and I will be calling the Veterans Assoc. to see if I can arrange it.

On a lighter note, Hubby and I spent a glorious day with our children and grandchildren.
We had a nice supper and some laughs. It was wonderful. We ALL enjoyed it even Hubby who willingly participated in being part of the group. :)

A few funnies that happened I shall share from my FB status

Our dog, Lady, is hard of hearing. She is laying at the foot of the bed and Hubby is trying to get her attention by talking to her. He finally says to her, "You aint paying any attention to me." I say, "She can't hear you" 
He says "What?" 
I repeat, he says "What?" Through laughter I say it one more time. 
Huobby says "Oh, she's like me, huh?" LOL!!

I was just telling my father...It was BEAUTIFUL weather here yesterday and I did nothing at all!
Nothing inside, nothing outside and you know what? 
I don't feel bad about either choice :D

Things have been so pretty good the last 2 days I think I need a Towne Crier, 2 O'CLOCK AND ALL IS WELL!!!
  
Indulged in too much sugar and shortening last night woke up at 4 with indigestion. :( 
Got out of bed at 4:20 
poured coffee at 4:30 
Hubby got up asking for a cup at 4:35 then decided to "start the day" and say "Huh?" to every thing I answered him.
His last statement was "My clothes are about gone out of there (closet)" 
My response, "Yes I need to get them to the cleaners" 
He asks, "You need to get what to the cleaners?" 
I stare at him thinking, seriously?! 
So I say "I need to get your coffee to the cleaners"
He hasn't said a word to me since. 
5:30 AM, It's gonna be an interesting day. :/
(One comment asked me what I was eating. I said other people call it cake with icing LOL)

And finally
 
It had been a rather peaceful morning and then Hubby decided he was cold so he puts on a housecoat, looks at me and says "I don't know how I'll make out in this cold weather, I don't have the meat on my bones that you do." 
Seriously Hubby?!?! I love you too!! LOL!!! 


See it's not all bad :)

Monday, August 22, 2011

***Angry, me this time but not what you think***

A call to the Dr this morning leaves me with an anxious heart.

Dr tells me that he and staff believe Hubby is in the beginning of end stages of his Lewy Body Dementia and recommended placement.
I was a little taken back by that.
In my mind Hubby needs to be bed bound in the end stages.
Unable to communicate and needs fed.
In my eyes, this is what end stage looks like.

But I suppose end stages start somewhere.

I've chewed these words all day.
I am not ready to hear this.
I am not ready to surrender.
My heart says I may not win the war but I can win the current battle.
Perhaps it's the fighter in me?
Perhaps it's my own superwoman complex?

I have seen & read where other caregivers were at the end of their ropes dealing with difficult combative behaviors, be they  physical or verbal from family members.
My heart ached for them as they struggled to hang on one more day. I prayed for the peace of not only them but their caree.
There were times I questioned, to myself, if they held on too long before placement.
Their own health seemed to be fading and their peace of mind was slipping away.

I remember the decision we had to make concerning my MIL when she had to be placed.
And I remember the reasons we made it.
All logical and in her best interest.

I've wondered all day, am I not seeing something others are?
Did Dr rush to a solution?

His points were valid and I acknowledge them.
One concern was that Hubby "may" get agitated enough to want to cause me injury but hurting himself in the process.
Dr was right, if that happened I would feel terribly guilty if Hubby fell and broke a bone because he was mad at me.
We never know what a person with dementia is capable of.

He thought it would be better for placement while Hubby could still make the adjustment with lesser distress.

My mind is racing and my heart is screaming NO!
I am not ready, not now.

I'm angry.
I'm angry because even though I thought I was, I am not emotionally prepared to deal with this thought.
I am angry because I can't find a way around the anxiety without feeling like I am jeopardizing Hubby's condition and making it worse.
I'm angry because Lewy caught me off guard and left me rattled.
But I'm most angry because I allowed myself to be swept up in the feeling all day and evening.
 A complete waste of a day.

The good things about days end, is another is on the way.
Today I may be shaken, but I'm not going down.

Tuesday, August 2, 2011

Order Up!

This post may be all over the place as that is how my thoughts feel today.
I am hoping that getting them down in print would sort them so please bear with me.

Hubby has been experiencing unexplained anxiety over the last few weeks.
I cant tell if this is related to his PTSD or his Lewy Body Dementia or perhaps a collision of both.
Anxiety that has caused him internal nervousness and fear. Fear he has actually expressed.
His accusations about me having him trapped here and stealing his money are hurtful but I try to rationalize them in my head. He really has no idea who I am or where he is and this HAS to be distressful.
I'm sure his fixation on his own death as of late has not helped the situation either.

At first it was easier to soothe his fears and calm him but as time passes the ability to do so is more difficult.
His verbal displeasure of being here and wanting to go has hightened. 
90% of the time I can easily shrug off his words. 9% I have to make a willful choice not to get sucked into his annoyance and the other 1% always finds me loaded with guilt because I let my mouth engage before my head.

Today I contacted Hubby's Dr and we have an appointment for next week. I think that's the quickest we have ever gotten an appointment for the V.A.

Then there are the times when Hubby is very calm.
He still talks to me about not being here and never wants me think it's because of anything I did.
At these times he talks to me about me. And lately I am a 3rd Kathy.
One day Hubby talked to me about getting out of here.
I asked him why he wanted to go.
His answer was that he didn't know but he needed to.
And it wasn't because Kathy wasn't taking care of him.
I inquired about Kathy and received a pleasant answer.
Apparently he felt that the one treated him quite well, "Almost like a God"
Then an uncomfortable answer,
the other didn't treat him bad but she could be hateful.
And when I asked him who I was, He replied "Kathy"
Then he said we were trying to confuse him and laid down.

Today started out unusually good.
Hubby wanted to go out and have breakfast.
I suggested another eating establishment with a greater variety to which he said, He didn't care.
MISTAKE!!
I wasn't thinking about the number of people in the restaurant and the amount of noise.
Bigger (menu) isn't always better.
Hubby jumped at every noise. I offered to have our food prepared to go but he insisted that it was okay and didn't want to leave.
During the meal Hubby complained about feeling nervous and shaky. He did finish his meal and we set out for home. Once inside he still complained about the nervous and shaky.
He needed assistance removing a shirt for his comfort.
I went through all the reg questions about illness to assess the situation.
Hubby rested.

Later in the evening Hubby announced that he felt his time was almost up.
What do you say to this? How do you respond?
I never know what to do except lay near him and talk calmly about other things.
Then the conversation took a sharp turn to accusations of thievery and entrapment.
I chose not to stay there so I went to another part of the house for a few mins. He finally settled down and I returned to the room.

Thus has been our life for the last few weeks.

Keeping my feelings in check isn't always easy.

Separating the man from the illness isn't always easy.
I love this man,
I hate this illness.

The other day he told me that I would be better off without him.
I told him I wouldn't really be and he asked me why.
My answer was because he made me want to be a better person.
He always has.

Then he placed an order for food. He knew exactly what he wanted and how he wanted it.
I smiled, prepared it and returned to him announcing
"Order Up!"
We laughed, he called me a smartalic and I agreed.

Thursday, July 14, 2011

She's supposed to be my wife

That's what Hubby told the Dr he saw the other day when asked who I was.
But Hubby doesn't really believe it. sigh

Sometimes I just get so tired of caregiving for Lewy Body Dementia that I don't want to even think about it, talk about it, research it,  blog about it, read about it. Unfortunately it's like air, caregiving is vitally needed so you go into auto pilot. Or at least in my case you do. I'm hoping it's just this dreadful heat we are having. A body doesn't want to do anything in it.

So where are we? Lets see. Still in our holding pattern except for some unexplained anxiety Hubby has been experiencing lately. We had an appointment with the Veterans Admin for Aid and Attendance a few days ago. We don't think he will qualify because his problem is not his service connected disability. I didn't really have high expectations for it but we followed through knowing all they can say is No.
So we get the appointment to see the Board Dr.
Hubby needs a 2 hr window to get ready to go ANYWHERE! Our appointment is in the afternoon so I don't have to get him up early.We have over an hr drive which is always difficult for Hubby. He sleeps or rides with his eyes closed so that helps. Big City traffic distresses me AND Hubby. The traffic itself for me and the amount of stimulus for Hubby.

As we prepare for the day I ask Hubby if he would like to stop and eat before we go. Hubby agrees and we stop at out favorite restaurant for lunch. Hubby allows me to use his wheelchair to take him in. This is actually the second time he has conceded to it's use getting into the restaurant for which I am VERY grateful.

Served and filled we make the trip to the Big City.
We arrive in plenty of time, check in and sit in the waiting area.
We are quickly called to the Dr office.
Now if you are familiar with the V.A. you know this is a rare thing indeed!
The Dr proceeded to ask Hubby a few questions.
Name,  check but spelled his middle name wrong
Date of birth, check
Age, He didn't know and looked to me for the answer
Who I was, answer, "She's supposed to be my wife". Still stings but shake it off.
Where were we, check
What was the date, unknown
What was the day, another look at me for answer
Who was the president, unknown
What town did we live in, check
What was our address, unknown and looked to me for answer.

Then Dr asked me some Qs about Hubby's abilities to care for himself , walk or be alone.
Dr showed me Hubby's THICK file that was going before the board.
Dr explained what our obstacle was.
Dr said he would help all he could and we were finished.
People this took ALL OF 10 MINS!! from wait time to leaving.
Going to the bathroom before the hr long trip took longer!!

Every one of these Qs could have been asked over the phone, or gleaned from his records. Especially from the form that his PC Dr filled out for this very thing just a few months ago!
The government, sheesh!

So anyway we make the trip home, stop by the fruit stand for the green tomatoes on the way and a trip to the store for milk then home.
I do not know what happened at this point but Hubby became agitated at me and refused to let me get the wheelchair to help him get to the house. For Hubby, the walk to and from the car is rather long so he uses the wheelchair and I am considering a few yard and parking modifications.

His anger was verbal in nature and the heat was high. He refused to let me assist in any way and told me to get away from him. The more I tried to get him to explain the more anxious he got. Realizing I wasn't helping the situation I left him there and came into the house watching him from the window.
Hubby struggled to get around the car but eventually made it only to get 'stuck' as soon as he needed to let go of the vehicle and walk without support. Seeing this I offered to assist in a matter of fact non threatening way.  "Honey, I'll be happy to get the chair for you." this was met with a hard look and a wave off. Again I retreated to the house. Watching Hubby let loose of the vehicle and 'freeze' in place was heart wrenching. I worried about the heat also. Yet no matter how many times I offered assistance he refused. Eventually he walked to the front of the car into the shade, was able to get a hold of the house and work his way to the porch along the wall and to the front door.
Once inside he was hot and HOT!
I left him alone as he went to our room, undressed and got into bed. I never knew what set him off but as the night came he seemed in a little better mood.

Anxiety continues to plague Hubby but not like that day. At least he isn't angry and I can deal much easier with non angry issues.
Most of the anxiety seems to hit at night, Hubby's internal thermostat goes haywire and he is usually burning up. I put the fan on him directly and it seems to help.

Another thing I noticed is that when this happens to Hubby he stresses about my whereabouts and hollers for my presence. Most of the time I am in the room pounding away at my FB games or looking for amazon deals so if I happen to be in another part of the house he will begin to yell "Honey!" Which I find funny that he does considering he isn't quite sure who I am, but then again, Hubby has always been a flirt ;-)
I'll come running only to find him confused, restless and unsure of himself. I make him comfortable as possible and sit with him until he sleeps.
Specifically last night I was busy in the kitchen when Hubby yelled for me. At first I said I would be right there, hang on, but he yelled again leaving me to believe he had fallen and needed help or something like that. I ran to the room to find him in bed but distressed. I asked if he was Okay to which he replied, "NO I'm suffering" I snuggled up to him until he settled down.

Anxiety is the new norm.

Another new norm is Hubby's declaration of his death. He talks about it quite often.
It goes along with his desire to move away and 'go home' to live alone. Wherever home is.
Hubby isn't sure where home is exactly but he knows this place he is in is not it. He believes this is a hospital that he has been mysteriously brought to and I am his caretaker everyone is trying to convince is his wife. I feel bad for Hubby but if I were the one needing care I think I would want me to be the caregiver. Although I tire, I'm pretty good at it. LOL!! ;-)

And me? I have finally overcome my mental hurdle about exercise. I wanted so much to attend a gym not just for the exercise but for the motivation, support and communion with others. But it was out of my reach so I sat frozen basically in my own depression UNTIL I watched an old episode of Bones ( I love that show) anyway, in the episode she and her partner Boothe were interrogating a woman. The woman was quite large, to be polite, and as they walked in the room, Boothe covered his nose and asked "What's that smell?" Bones, answering in her direct, scientific manner she has, said, "Mold, morbidly obese people have a tendency to develop mold in their fat creases." I nearly fainted and my hurdle for exercise was jumped! I did not wish that to be me.

So I started changing my eating habits and began ATTEMPTING (major emphasis) the couch potato to 5K challenge. It has NOT been easy as it's taking me 2 weeks to accomplish week 1 but I can see results not only on my scale but in the way I feel.
I use the 20 mins specifically for prayer time (in addition to the sporadic throughout the day conversations)
I changed how I thought about me, God gave me a job, caregiving. How could I continue to do it properly without the right tools? My body and mind are all part of the caregiving package and I was not using them to do the job properly. I could feel my own health failing. It needed repair. Just like any piece of equipment we have that might need repair I would see to it that the piece was repaired or replaced.
Since I didn't want to be replaced, ie having to place Hubby due to major illness of me, it was time to repair the Temple.
In my eating change came Hubby's eating change. Healthier choices, smaller portions, more fruits and veggies.
No candy, few sugars. Hubby's change is less restrictive than mine. If he asks for it he still gets it but I don't volunteer those things or have them readily available, well except for the fudgepops. They will have to be a special trip to the store.
I even tried to give up my morning coffee but that was the result of a 3 day headache! I couldn't live with that so I welcomed it back with open arms. I'm gradually cutting back on the amount and it seems to be working.

I purchased a juicer for fresh juice.
I LOVE IT!
I HATE IT!
I only hate it because it gives me thoughts of  wanting to plant a garden next year! LOL!! ;-)

These changes are not easy, I won't lie and say they are a breeze.
They haven't given me miraculous power to be superwoman. They are just a step I needed to take for me.
I still get tired of caregiving.
It consumes my every thought and action.
Even when the aide is here is still not down time. I must run errands and be aware of the time.
Everything I do has to be with Hubby in mind, even at the back of it.
And if it's not supposed to be, how do you separate him from it?

I'm still challenged in my caregiving roll but I'm trying to stay positive.
I know the changes are inevitable and I hope to be able to roll with them.
There are just some days I'm in caregiver overload and I want to sit down and say, No thanks, I'm good.