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.

Wednesday, January 5, 2011

2:30 AM

"Honey, I think I need to go to the hospital."

Not the kind of thing you want to hear at 2:30 AM.

So a little backround. 
Hubby has had several "bad" days. Until you come face to face with dementia on a daily level, it's difficult to understand the terms, good days and bad days. At least it was for me. Oh I had been around other people with dementia before, this isn't my first walk around the block with it. Hubby's mother had it. She lived in our home for a few months and at the time I was only vaguely familiar with dementia.

I knew what dementia was but didn't KNOW what dementia was. Every day was a bad day as far as I was concerned. I had 3 kids under the age of 12, a moody and emotionally unwell husband, his brother with Downs syndrome and his mother all to care for. It was also during this time that Hubby was admitted to a 9 week instay PTSD program at the veterans hospital. To add to the joys of the situation, Hubby, being the friendly "Let me take care of you buddy" sort that he is/was, invited complete strangers to come and stay with us while they had "weekend down time" at the hospital. People that were in from other states or had no place to go on the weekends.

I have to admit that we met some of the most wonderful people and I am still friends with to this day. I am blessed to know them.

So combine all ingredients and mix well. Every day was a bad day for dementia.

fast forward....

It's strange that a few months ago I would have considered Hubby's agitation as bad  and yet these days still bad, just not as bad. When exposed to something for long periods I suppose we get used to it.
But last night, Hubby got himself all kinds of  annoyed. Apparently he has been on brain overload the last few days. Angry thoughts and outbursts of moving away and living alone. Driving and taking back all the things I'm "stealing" from him. He found my purse and took all the money out of it. I never said a word about it not wanting to add to his emotional decline. He spoke of his death and how much longer he thought he would have to live like this. He debated about not taking his meds in hopes the process might speed up but me not confirming that possibility finally compounded enough last night to send him into an anxiety attack.

Hubby has never had an anxiety attack before and when he woke me from the sleep I had finally found, I had to survey the situation and make a judgment call. I fear of hospital admittance and new meds. I know that with Lewy Body, some meds can have serious side effects that are irreversible. Meaning sending him deeper into Lewy and not bouncing back. Perhaps I am selfish in keeping him away.

Hubby was shaking so severely almost as though he was having chills just not quite jerking like a seizure. He couldn't stop shaking. First thing I did was check for body temp. He wasn't feverish, neither was he cold to the touch. He was crying as he tried to talk to me about how he couldn't stop shaking and he couldn't stop thinking and he had never been like this before. As he spoke I assessed that he was experiencing panic. 

My poor Hubby. I felt helpless to do anything. I snuggled up close to him and held him tightly. I spoke in calming words to assure him he was in the best place he could be. That I would do everything in my power to make sure he was safe and comfortable.I told him I realized his frustrations and I wished beyond all wishes I could change things for him but I was not able to. So I would just love him. He cried and shook all the more. At one point he told me he even thought about shooting himself  but didn't think he had the nerve to do it. (FYI- NO weapons in the house) Then said he even wondered if I would do it for him but he decided I would not. I agreed with that and I held him as tight and as close as I could.

I snuggled into his neck close to his ear and verbally prayed for him and his peace and calmness in the name of Jesus. 

After a few mins Hubby seemed to relax and his shaking started to go away. I lay there breathing on his neck and listening to him breathe. A few more mins passed and Hubby settled down almost completely. Enough that he was able to rise and walk to the bathroom with minimal problems.

On his return to the bed we snuggled up again and fell asleep. He rested fairly well the remainder of the night.
Or maybe that was me.

Hubby thought he wanted to go do something today but as the morning passed I woke him to see if he was still interested. He was not. It is now 12 hours later from his panic attack. He sleeps. I listen to his rhythmic breathing and even woke him one to see if he needed to use the rest room. I know how frustrated he gets when he lays asleep too long and there is a need to get cleaned up and change bed sheets upon rising.

I love Hubby.

I don't like leaving these posts in doom and gloom so I am going to share a smile we shared from a couple of weeks ago. I had it all typed out and never posted it. Not sure how that happened so here it is

Conversation with Hubby: "Is my... (long silence) well, I guess it is, or isn't, or aint."

Me: "Before I could answer that question I would need to know what you are talking about."

Hubby: looks at me, smiles and says, "I have no idea what I'm talking about" 

We both just broke out laughing! LOL!!
It's always good when we can share a laugh.

Saturday, January 1, 2011

Hubby + Wife + Hoyer Lift = HILARIOUS

When Hubby was first diagnosed, the Veterans Administration sent us some equipment for his needs.

Hand rails, bath chair, bed side toilet and raised toilet seat. They even sent us a hoyer lift.
At the time we received the lift, the item wasn't needed. I did however know it would be used at some point. I stored it away. It came with an instructional VHS Tape. Bad thing, we no longer had a VHS tape player. I called and asked for a DVD but have never received it.

I found a you tube video that was some help in learning but to be honest, there is nothing like hands on experience. I'm a "Let me do it" kinda gal anyway.

Since I haven't used the Hoyer lift any I had it stored in my closet. It became a pretty good rack for my clothes. I had to unload it finally as Hubby had taken a tumble in the bathroom floor the other day and no amount of coaxing was getting him to understand how to get up. I have already learned to NOT try and help. The result could be injurious to not only him but to me.
So after I surveyed Hubby for visual injury and made sure that all his limbs were still movable I was left with 2 options. Call for help, get out the Hoyer.

Hubby was very certain he didn't want me to call for help but realizing I only had 2 choices he wasn't much resistance when I wheeled the contraption into the bathroom.


If I was the type of person to make a profit off of funny videos I could have made a bundle this time. But I'm not so your imagination will have to do.

First off Hubby was situated in a very awkward position. Awkward for 2 reasons. One was position the other was that he was unclothed and not easily moved. I had to get Hubby moved from this tiny spot by the toilet into the larger more manageable part of the bathroom. I couldn't slide his body across the floor so we, Hubby and I,  tried to get a bed pad under neath him. We managed to get one up under him enough to put a sheet around his chest and under his arms and I was able to drag him to better positioning for the Hoyer.

2nd I needed to figure out the sling. I positioned it over both arms and around his back fastening the belt around his chest.
Pulled the sling down as low as I could and tried to get it under Hubby's behind. Was only able to get it about 3/4 of the way but felt it was enough to at least raise him for better pad positioning that I could maneuver him a little easier. I attached the sling to the lift arm and as I raised my head I smacked myself on the head.

I raised hubby a few inches and placed a pad under him. At this point Hubby gave up all assistance with me and just lay there in the sling. I decided to just go ahead and raise Hubby up and slide a chair under him. I forgot to turn the knob for Up so when I went to use the pump handle, Hubby's elevator took a downward slide and Hubby has VERY WIDE EYES!! LOL!

Knob turned, for the correct direction I once again raised Hubby. The higher he went the funnier it appeared to me as his legs were stretching out and I couldn't get him to understand that he should try to put feet under him. I FINALLY just cranked him up, grabbed a chair, slid it under him and lowered him onto it. WHEW!!

Needless to say we need PRACTICE!!

Hubby and I both found this to be an amusing thing and we both laughed. I told him we needed to practice getting him up and down in that thing. He agreed.


I bet I've tried to update this blog a hundred times. There seemed nothing to say.
Life has just run it's downhill course and I didn't want to capture it forever in the negative thinking I have had lately.

Some days I have wanted to run screaming.
Remember the expression, if you have nothing nice to say...?
Of course I don't always follow that rule, like now.

I feel like somewhere along the way I lost my direction and my focus. Perhaps it's just this time of year.
Whatever it is I do hope it passes soon. I don't like feeling this way.

2010 is ending. Many have celebrations planned and many are staying home. LOTS of well wishers for the new year to come have expressed their thoughts and yet mine are seeped in a blank feeling.
I feel like there is no hope for a happy new year.
I know that the year will only bring with it more sadness, frustration and more confusion. Harder times, physically and mentally. I know that the new year holds no hope in it for Hubby.

I decided to do a comparison/review of Lewy at the end of our 3rd year of battle

2yr Ago:  None; able to do all Activities of Daily Living (ADL) independently
1yr Ago: Can function with supervision and some assistance
Today: Hubby is able to cooperate some and has a little mobility, but needs constant assistance 

2 yr ago: Varying levels of intelligibility and clarity
1 yr Ago: Gets lost in thought frequently, forgets what he was going to say or incorporates something non relevant he heard or saw into his conversation
Today: Gets lost in thought most of the time. Difficult to make sense of his communications

2 yr ago: Completely independent
1 Yr Ago:  Needs minor assistance food cut up more finger foods and things easily swallowed through a straw. His shaking is so bad that trying to keep things on a spoon or fork is terribly frustrating to him. He eats a lot of hamburgers (hand held) and Malt o Meal (through a wide straw)
Today:  Has a few swallowing issues. Unable to feed self once but still attempts to be independent with finger foods, items cut up and thinned cereals he can drink through a straw. No more Hamburgers but biscuits and gravy were a staple here for a while. He eats less meals though due to difficult eating issues I believe.

2 yrs Ago: Knows self, others, time, location although time and space
have no meaning
1 Yr Ago: Has regular lapses of knowing self, others, time location He knows
Me as caregiver. He does not remember what my relationship is to him though :(
He does not recognize our home as his but he has one just like this one somewhere else.
More and more of us are leaving his memory. Makes me think of that digital camera commercial where the pics are all huddled together and someone has to be deleted to make room for a new one.
Today:  Not much change in what, just in who. An old friend stopped in to relay sad news about the passing of another. Hubby had no idea who he was or who he was talking about that passed away.
Time of day is completely gone, morning could be night and vice versa even if the sun is shining or it is pitch dark.

2 Yr Ago: Periods of depressio & infrequent periods of fear/anxiety
1 Yr Ago: Regular periods of depression and anxiety. Resents not being able to drive anymore.
Thinks it's my fault.
Today: After a period of angry outbursts, Hubby now has periods of grief about perceived losses

2 Yr Ago: REM sleep disorder most nights.
1yr Ago: Same. Thrashes and hits.
Today: Same Poor bed table and lamp #1

 How much HELP do I think I need to provide adequate care for my spouse?
2 Yr Ago: As of today we are holding our own
1 Yr Ago:  He needs 24 hr care as he is a fall risk and too confused to be left alone.
Today: He needs 24 hr care and supervision due to falling issues and confusion

How many days each week are you the SOLE CAREGIVER?
2 Yr ago: All of them
1 yr Ago: I have home health that comes 2 hrs a day Mon-Fri so I can run to town and his aide gives him a bath.
Today: I have a health aide that comes 10 hrs a week. The rest of the time I am sole caregiver.

How often do you feel that you do not have the help you need?
2 yr Ago:  never
1 yr Ago: regularly
Today: regularly

 Are there others I can call upon when I need more help?
2 yrs ago: yes---easily available
1 Yr Ago: yes, but difficult to get anymore
Today: same

Quality of my sleep
2 Yr Ago: Frequent interruptions.
1 yr ago: frequent interruptions that I am used to. I have found that I delay going to bed for as long as possible and getting up early. I'm not sure why I started doing that.
Today: frequent interruptions I am used to but not well rested even though I try to nap

 Do I get enough exercise for health and stress control?
2 yr ago: yes, always
1 yr ago: NO I do not take the time to exercise for my health and stress. I had to
quit my gym so I just stopped doing anything and it's telling on me.
Today: I don't even think about it and I don't want to talk about it.

 How much emotional stamina do you have?
2 Yr ago: a lot
1 yr Ago: seems like I have a lot, but easily rattled by the unexpected my emotions can sit right behind my eyeballs.
Today: Not enough I fear, You can ask how I am and my answer will be fine, but please don't ask how I really am.

 What are my main worries?
2 yr ago: Actually difficult to answer because I'm a one day at a timer
1 yr ago: One day at a time hasn't changed but I have added a concern about personal health, if I get ill who will care for my loved one. Health of my spouse; Heaven forbid he get sick and run a fever!
Effect of illness on the well-being of children, other family members.
Today: Same concerns with the addition of Hubby's loneliness.

What do I do to comfort self, for restoration?
2 yrs Ago:I joined a fitness club and attend 5 days a week
1 yr Ago: I had to quit the club because Hubby could not be left alone any longer and the time constraints were killing me. I became a facebook junkie and have actually had more contact with my far away family and my church family because of it.
Once a month we hosted our Church Youth Group for food and fellowship. I really enjoyed that.
Today: I had to cancel our Youth Group gatherings due to Hubby's unpredictable behaviors.
I seem to have lost much interest in anything.

 What percentage of my life is organized around your spouse's health?

How much of your life is lived with LITTLE consideration of LBD?

Sunday, December 5, 2010

Tis the season...

...to get back to reality.
The responsibilities and increasing care needs of Hubby have brought me back from the online game escape I needed and took full advantage of. Juggling them both left one or the other lacking so I chose Hubby.
I know there will days when I will wonder why ;-)

I find myself struggling this year to get anywhere near the Christmas Spirit.

Perhaps it's the day in and day out of the same day, over and over and over again.

I should appreciate Hubby's emotional calm days.I'll take them anytime over the distress and hostile anxiety he has and can exhibit. These days are filled with confusion, repetition in deed and word. Mobility comes and goes. Mostly goes. Incontinence has increased to him not even trying to get up and go to the bathroom some times or sleeping right through it.

I bought a complete waterproof mattress cover at my local Wal Mart store. It zips the entire mattress and memory foam cover, in. I also purchased additional waterproof mattress pads for the bed in addition to the complete mattress cover

Another item of purchase for Hubby is a chair with arms. At Big Lots I found a perfectly sized tub style chair for Hubby to sit in as he eats. We have lots of stability issues and sitting on the side of his bed to accomplish the task is becoming increasingly difficult. Its a comfy little thing, the arms can keep him upright or propped as he needs. The only thing we need to adjust is the height. It seems to be a little low for Hubby so I will look for those bed risers. You know those things you put under the legs of your bed to raise it a few inches? I think they may be just the thing we need.

I do not recall if I mentioned we had a swallowing issue that has crept in to our lives on occasion. Less food consumed by it and pills not taken as often. We also encountered a self feeding issue once. Hubby could not feed his own self and I needed to feed him. This little chair will also come in handy for being able to sit in front of him to help with this should and when it arises again.

Yes, I think I shall like this little chair for its convenience and support and a little peace of mind. Maybe no more walking in on Hubby to check on him while I was preparing supper only to find that he was no longer sitting up on the side of the bed but fallen over and unable to raise himself. Initially I run over to offer and give assistance then I find myself chuckling at the site of poor Hubby like a turtle on his back. Yes I know, bad wife. I smile at Hubby and he usually smiles back and then I ask the smart question, "You need help?" We laugh and I get Hubby back to his original position.
 Hubby rarely ever calls for help anymore if he finds himself in a awkward situation. As a result I find I spend the majority of my day in the room with him. Ready to help at a moments notice. I sometimes wonder if this is the right thing for me.

Providing physical care for Hubby comes fairly easy.
I am blessed that I have the opportunity, health and means to do it.
I do see changes that need to be made before the providing becomes too difficult. I have placed myself last on the list of "dumb things to do". I have neglected my body and its proper needs for nutrition and exercise. As a result I am feeling the effects of self neglect.

The emotional caring I give Hubby is not up to its usual par. I find myself frustrated easier at his constant "what?", or, "Huh?" It seems that no matter what I say to him, he has to say, "What? or "Huh?"" and I must repeat myself more than once, more than twice and sometimes as much as several times. With each repetition I speak louder until it finally seems like I am shouting at him. There are times I get pretty tickled at his interpretation of something he thought I said, the result nowhere near what my original words were, and plenty of times leaving me confused as to what I was actually saying and why. 
I don't think it's always because he can't hear me, I think much of it is that he does not understand the words.

Then there are the times when Hubby wishes to converse with me. Knowing that the conversation is going to go nowhere and make no sense I almost cringe whenever I can't immediately guess what he needs and have to wait for him to try and tell me. It's not the waiting, it's the sorting out.

Lewy has stolen Hubby's vocabulary so he trades one word for another. Talk about ... I forot, what were we talking about?

Now on to the extra people in the house. I really, really, REALLY do not like the extra women here. They are nothing but trouble and keep Hubby distressed when he talks about them or thinks about them.
The sad thing is that these other women are ME!
 Is this where Me, Myself, and I are actually 3 people? Hubby speaks of one by my name, and the other as that other woman. Of course he always tells me that I know who that other woman is and then tells me things 'she' did that in actuality I did. When asked, Hubby can recall my name but there is no connection between me and them as far as he sees. Only that we work together to keep him confused.  So there it is. Another day or how ever many in our lives. The days all run together anymore. Nothing new to say or tell really so I feel like there is nothing to update about.

I will end on this.

We had the pleasure of a visit from our 2 daughters and a son in law. As the girls and I took off to spend some time together Son in Law, BLESS his heart, took responsibility for Hubby and took Hubby to town to get a cup of coffee.
God greatly blessed Hubby with a tremendous day, physically and mentally and Hubby was able to get out for a few mins.    
The hardest thing, Son in Law said, was getting Hubby in and out of the car. I KNOW Hubby was so looking forward to this time and greatly enjoyed it. I wish he had the opportunity to do more of it. Those are rare opportunities I fear but oh how appreciative we are for the ones we have.

God has blessed us with His goodness, all the time, even when it seems bad. I chose not to forget that.

Monday, November 15, 2010

Something new

It was a great weekend for the most part :)
Hubby and I had the pleasure of a visit from our oldest daughter and a couple of our grandsons :)

Hubby was very happy to see her. Even though he tried very hard to associate with us all it was painfully obvious to daughter that her Daddy's condition had deteriorated quite a bit since her last visit with us.
It also didn't help that he spoke about me not as her mother but as another person, addressing me by name to her. That coupled with the announcement from Hubby to Daughter that he wouldn't be around much longer.
Hubby needed to say it. Daughter cried and my heart hurt for them both.

We did find time to share our feelings, as sad as they may have been, but more importantly we took the opportunity to laugh until our faces hurt. Hubby enjoyed the boys running around peeping in on him. He tried very hard.

Now the visit is over and we find ourselves at a juncture. Today we woke to a new issue.
Hubby wanted oatmeal for breakfast as usual. I prepared it and set it on his table. After a few mins I noticed he was struggling and was becoming frustrated. I asked Hubby how I could help. He asked for his table to be raised so that the bowl was almost level with his mouth. Still struggling to eat I noticed his problem. Hubby was not putting his spoon to his mouth but instead trying to move his head to his spoon and having a terible time of it. I offered my observation but Hubby never grasped what I was saying, the end result was me feeding him.

At first he laughed at me and the prospect. I reached over and stroked the side of his head and face in a gentle manner and smiled at him. He agreed that it would be a good idea.

I don't know how long this new thing will last. Who knows, by the time he wants to eat again he will have no problems. But he knows I am willing to patiently feed him if he would like help.

I shall look for other food choices for him to continue as much independence as he can until he just can not any longer.

It was a wonderful weekend. :)

Thursday, October 28, 2010

No place to hide

I'm very tired all the way to my heart.
I'm sick to death of Lewy.
It invades every aspect of my life.
It keeps me trapped in my emotions, thoughts and time.

I'm trapped in my frustrations as I don't want to take them out on Hubby.
Some days he gets the short answers though.

I'm trapped in my thoughts and concerns as Hubby wouldn't understand them so who do I have to talk to?

I'm trapped in my time away. Leaving Hubby with anyone for any length of time due to falling and incontinence issues is difficult to almost impossible to do.
He is still a proud man and having these issues in front of anyone else but me is difficult for him.
Even though he doesn't remember us getting married, he still feels comfortable and safe enough with me to accept my help. He has even refused the aids assistance with anything but bathing.

I have become frustrated with his insistence on removing is clothing before he ever reaches the toilet leaving me with a mess to clean up several times a day BUT, I have found that as soon as he heads toward the door I can gently remind him to keep his clothes on until he gets there and that seems to work.
I suppose it's not all bad.

Probably the hardest thing about Lewy right now is Hubby's realization of his mortality.
I've seen him cry more than once lately.
Just last night he asked me if I had noticed he was getting worse.
I almost wanted to chuckle when he said "I don't know if you notice it or not, but I think I'm getting worse."
I sat close to him as he tried to communicate with me.
He was concerned that his health was not fair to me.

I assured him that I was here to care for him by love and choice.
As long as I'm able to do so I will.
My goal was to keep him at home and feeling safe, comfortable and loved.
His tears fell as we spoke and I kissed him.

My tears fell later so he wouldn't see them.

I'm leaving this post on a positive note though.
A recent visit to the Neurologist awarded us some new meds to help combat REM sleep disorder. I am always reluctant to give new meds. If anything I would like to eliminate as many as possible but every time we cut back we hit an emotional snag.

But that's not the positive.
The positive was when I asked the Dr to specifically prescribe the pull up type undergarments for Hubby.
The Veterans supplies these items but only the tab type unless Dr specified and with explanation.
So I explained that the Dr would have to specify the pull up type and the reason I requested them which is, that to some degree Hubby is still mobile. He can still remove his clothing on his own and the tab type clothing are difficult for him to manage. There are also some dignity issues involved with that style. I wish to retain as much of that as I can.
Dr looked at me, agreed to my request and said, "You're taking excellent care of Hubby."

Even though some days I feel like I'm not, it's always  good to have re assurance from the professionals that can change your life with the stroke of a pen.

Friday, September 10, 2010

Touch and Go

So it's been a couple of months I've been emotionally hiding out.
Not wanting to deal with things and  just making it one day at a time.

For a little while it was sure touch and go.
I wanted to touch Hubby's neck all the way around and not let go.
What a roller coaster ride we have been on.
Those sharp twists and turns are hard on a body, mind and heart.

Am I feeling better? No not really. I'm still making the most of the situation.
I retreated into myself to sort through emotions. Too many of them to sort through so I retreated away into an on line game where reality didn't enter. I wanted as far away from Lewy as I could get my mind.
Unfortunately, when Lewy invades your life, there is no escape.

As of late Hubby has take a down turn.
Mobility is becoming worse and worse.
A recent Dr appt allowed us to stop off at our favorite place for lunch.
Hubby insisted that he would walk in but it became very apparent that the task was going to be difficult to nearly impossible.
Yet he was determined for reasons not known to me. I can only speculate that because this is the place he frequented most. This was his stomping ground. This is where many of his friends and acquaintances congregated. This was his daily ritual no matter what the day held. If he was ever faithful it was to his beloved gathering of friends.

Upon entering the establishment, everyone in grasping reach became support. I finally made the announcement that if they were steady be prepared to be used as a hand hold. The owner offered assistance and just as we seated Hubby decided he needed to go to the bathroom. UGH! Up and across the floor we went.
"I have your walker in the car, let me get it"
"Are you sure? It would make this much easier"
Stare down so I backed off.
The last thing I wanted was another police incident.

I was able to help Hubby get into the bathroom and about the time the food arrived he was finished so I led him back to the table. Once again clutching everyone and everything in his path.
For some strange reason he doesn't walk. He falls forward into the closest thing to grab and takes one step forward and scoots the other foot up about half way or a little more. I have tried countless times to get him to walk one foot in front of the other or to actually get to an object before he grabs it. I continue to suggest this but my efforts are wasted. A walker is scarier than him walking on his own. He continues to push the walker instead of walking with it. I can picture him in a heap all tangled up in the walker like a cartoon.
How do I make him understand?

As we were sitting eating lunch a few people we know spoke to me. Polite conversation or just  a hello. What stuck out in my mind was NOBODY spoke to Hubby. He noticed it. How heart breaking. He was sitting right there. OK so maybe he can't carry on a conversation but you could at least say hello or mention the weather or pat him on the back. Anything to acknowledge him.

Incontinence is the norm and disposables have been the garment of choice for a while. Another I can't make him understand is, they do not need to be removed the moment you enter the bathroom door. I can't make him understand to wait until he reaches the toilet before removing his pants thus leaving a trail of cleaning to do. I have tried multiple types of cleaners for odor control. My choices are peroxide in a spray bottle to clean the tile floor and vinegar in the laundry. Odo Ban just for the smells good and fragrance plug ins.

2 times Hubby has cried. Now he has come face to face with his mortality and he is afraid. I just held him close and reminded him I was here to the end, whether he liked it or not. He wiped his eyes with a tissue I handed him, smiled at me and held me in his shaking arms.

I suppose on a good note, our down turn has resulted in less anger and hostility. I like that. The cost was high to get it though, and rising.

Eating has diminished some and weight has been lost in the last 2 weeks. Not much but enough to keep track of. Withing the last few days swallowing issues have developed. Pills have been put in pudding, broken crushed into a powder but his resistance to the taste or texture has left him without meds. It is here that I am unsure how to proceed. My head says get advice. My heart says leave him alone. This is his choice.  Now I wait for a call from the Neurology Nurse so my head wins out today. ( *UPDATE: Nurse called and sched appt for Oct, made notes for Dr and I'm going to follow my heart in keeping Hubby comfortable)

I don't like leaving these these posts on bad notes so I'm going to share a funny.
To some it may seem insensitive so if you are the overly sensative type stop reading here.

Our teen aged niece has chosen to to live with us for a year. I gave Niece every reason why she might not want to but she still chose to be here. What a blessing to have her. Niece has brought so much joy into my life lately and I almost forgot what it was like to laugh really hard with someone. We decided that home school was the best option for us, more for me and my convenience. Niece is very smart and has wanted to home school for a few years now. This was perfect. She has been doing well.
Home school gives us the option to be flexible so we took a short day today.

Tomorrow is Niece's15th birthday. We made plans to lunch for her birthday when the aide came.
When Aide arrived I gave her the rundown of my plans. Hubby said he wanted a bath so I informed Aide.

As I walked through the dining room I told Niece "Let's go kiddo" she rose from her chair and walked to the front door, following me.
I passed the door to tell Hubby goodbye and entered our room just off the kitchen.
Hubby clutching the bed rounded the foot of the bed headed toward the kitchen.
Upon seeing Hubby I quickly stepped into the bedroom and shut the door.
Hubby was not dressed!
Niece had been behind me but made a stop at the front door. I had blocked her view of any upsetting image. Explained to Hubby that Aide would be in shortly to bathe him. Kisse him goodbye and exited the room. Niece in a worried, shocked, disgusted, confused tone asked, "Was Uncle naked?! I replied, "Yes, he was". Then I looked at Niece, smiled really big and said, HAPPY BIRTHDAY! I got you a stripper!! ROFLOL!!!! ;-)