Dec 5, 2022.
Nice new addition to Peter’s room. Found a great thrift store in Courtenay. Got this bookcase for $2!
Yesterday after the market all my stock was placed in the car. It’s been too cold to lug it to the shed. So it’s staying in the car. Found the bookcase. Measured and fingers crossed after I moved around all the stuff… I just got it in the car! Wow! Where there’s a will, I will find a way! LoL 
You can see how it’s touching the seat and the roof in the one photo!
Brought it over to Peter’s room. Put the shelves in and then decorated.
Plus I brought in the fake plants and some Christmas stuff I got at IKEA last week and the Thrift store today! Made a little Christmas scene. Just need mini lights for the trees. Next time.
Peter had his bath today. Makes him very sleepy. We did watch Jeopardy after setting everything up. Held hands. He gave me some great kisses. 
. Then I took him to the lounge to watch tv there. Told him I will feed the cat while he watches the show, then has supper.
I figured best to leave and get home before the temps drop and roads freeze again.
Tomorrow supposed to be freezing rain - will see how things are before I decide if I go or stay home.
Note. Added our names to the group title. I noticed aFew other pages or groups with the exact same name. So to eliminate confusion that this group is us! 
Dec 3. It’s been sunny & above freezing and parts of the Roads are now wet. Right now it’s 1 degree and going down to -4. I know it will freeze shortly. Not driving to Courtenay now.
I was a vendor at a market all day. Called the care home Around 4ish. He is doing well. Just finished listening to music in the lounge area. . I am Sending my love and hugs to him.
Everything happens for a reason. He got Covid and I didn’t see him. Then me. So it helped push me to accept that I can stay off the highway a couple days. A few days is nothing like the week without going!
The universe (my angels and guides) knew I wouldn’t voluntarily give up not going there. So they forced the issue with covid! Hmmm 
they know me so well.
Dec 2. 10am. Nurse called. Just after 12:30am, they found Peter on the floor beside the bed. He was changed, due to being saturated a lot. About 3 changes due to wet. But that could be the UTI meds causing that. Third time he was on floor. I am assuming his bed alarm was on?
This morning He is good. No injuries. Talking a mile a minute.
It’s snowing and many weather warnings. So I’m not sure I will be down today. So sad 
. But I am not confident about driving that far down to Courtenay with temps around zero, stuff melted. Now snow. Could be ice under the snow.
If I get in an accident that means more time away from Peter. So I best be safe…. And smart…. As hard as it is.
I have markets in town this weekend. Meaning might not get to see him till Monday? Weather supposed to be better… maybe I can get down to see him around supper on Saturday? 
Have I mentioned that I don’t like this weather? It makes it so hard to get around safely and it’s keeping me away from Peter 
I'm in Abbotsford for a couple days. Helping family.
It’s 5:30am CVSV nurse called to tell me Peter’s sugars were low last night. Below 9. But they gave his insulin anyway. Order is if under 9, no insulin !!
His sugars were around 2 this morning. He was disoriented, sluggish. Of course!!! Called 911. M2 is his report. No hospital. But ambulance attendants said take him to hospital be checked.
He was on the way as they called me. Stupid! He was already perked up and talking as he was leaving.
I’m on mainland and can’t even see him there!!!
Just concerned he will be ok.
They feel he will be back soon. But….
Meanwhile, I went out to get the 3-4 inches of snow off the car. Not snowing right now. Ferries running Roads should be better by 10:30 as I leave for the ferry!
Then as I had time to breathe! I called the hospital. They said he will be hours. Many more tests. I said No! His DNR said not to the hospital unless it can’t be handled at the home. I want him sent back.
Dr said he will prescribe antibiotics for a UTI they found - I said ok. Sugars are at 9 now. Good! They will coordinate with home and no more tests as per my request and he goes back to CVSV! Good!
I called nurse at home. Told them update. Said Peter should be back. Hopefully soon! Asked to call me when he gets back.
Pray 
it will be very very soon.
We have the DNR section M2 which says ONLY transfer to hospital IF care cannot be handled at the home! The nurse said he was coherent, numbers back up, and they wanted to call me first. The paramedics said no we take to hospital to be checked! Why do we have this form if it’s not followed? Why?
Nov 20. These last two weeks have been the hardest. First 6 days not seeing Peter due to him having Covid. Then I see him one day. Then I test positive Tuesday Nov 15. Today it’s been another 6 days. I called the BC health line. It’s ok for me to go out if I don’t have symptoms. No more mandatory isolation here in BC. BUT the care home has a regulation that people show their negative test results to enter. I understand why.
But I don’t know if I can go on each day… I push myself to get things done. Otherwise I sit and just veg out. Watch mindless shows to keep from thinking of Peter. I call daily and hear he is doing well. Then I cry and cry. For 38 years my life has revolved around my loving caring wonderful husband. Now I’m being kept away (just because of a stupid positive test) from him and I’m really having a tough time.
Yes, I pretend to all that I’m ok. But inside I’m breaking apart. I try not to think. Thinking makes me cry and then I fall apart. I’ve messaged the care home and asking if there is any way we can get around this positive test. Especially since I have no symptoms! I’ve been told some keep testing positive for weeks! I can’t even fathom that far ahead!
I pray each day for a negative result so this nightmare goes away. 
This photo is from a few weeks ago as he looks through a cool car book.
So I am finally coming to terms with the idea that Peter might need to live in a care home. I have decided to no longer worry about it. But to prepare, just in case. It’s taken a toll on me, emotionally to get to this point. It’s hard to ‘let go’. But I realize that one day he will get to a point of not being able to walk. I can’t lift him and move him on my own.
I am learning to look at it as a longer day program. He goes to the adult care for 3 hours four days a week. This would be an overnight care. I have been told by the specialist on Monday that I can be with him as long as I want the first while to help him and I get used to him being in a different ‘home’. I was concerned having read about people being told to drop them off and not visit the first week or two to help them settle! That would NOT work for me or Peter! I know I am assuming for him. But I feel I have earned that right to do that. LoL
The geriatric specialist who diagnosed his dementia and saw him again on November 8, 2021 told me that he feels for us it would be best to be together and slowly allow us both to ‘wean’ off the time as the days, weeks go on. I am much more comfortable with that.
So much that I have actually looked at the three homes on the Internet. Now I need to make appointments to go in to view (tour) them and ask questions.
I have reconciled myself to believe that I needed to have that day where he couldn’t move to ‘wake’ me up and get me moving with placing his name on the list for a subsidized room. Then going through the emotions and turmoil and finally knowing that if ‘the universe’ feels he needs to go there, a place will open for him. If he is to stay home and leave us from here, that will happen before a place opens for him.
It’s difficult to be realistic. But I know the end result of this disease is not a long life. So I have had 7 years to come to terms with that knowledge. It will not be easy for me, either way. I only know I will have a community of help to get me through one of both options. As I’ve heard before. What is to be will be!
The specialist’s nurse told me that it will be hardest on me. I have the memories. He will have moments. But, his memory is no longer what it was even a few months ago.
More and more he doesn’t remember people. He looks at photos and knows not who the family are. He looks at me and many times doesn’t know who I am. It’s all part of the sad dementia process....
I use to look at him going to a home as me giving up. But it is really me finding the best possible care for him overall. Somedays the lack of sleep makes me cranky. Not good for either of us. He doesn’t remember the incidents, but I do.
I have been lucky. He is not violent as some become. I am also lucky that I have been able to stay as sane and not totally exhausted and worn out as some. I do feel my meditations help. But, even that gets difficult when faced with gibberish, leaning, not walking, not taking, eating and having all the food land all over, the incontinence, the many loads of laundry, the constantly being ‘on’ and watching to prevent falls or other mishaps... Yes, I must admit some days it is tough. But, I know and believe the quote, ‘God gives us only as much as He knows we can handle’. As much as I wish to believe I am superwoman - I unfortunately am not. There will be a time when I am physically no longer going to be able to look after him. Mainly due to his mobility. Therefore I resigned myself to know I need to have the option of a home open before we come to that point.
Yes, I still feel emotional and want to say I can do it! But I am also (hopefully) smart enough to know that what I want is not always what ends up being the best for all.... Wow! That’s a tough mouthful to admit!
Now that I have rambled on, I will bid everyone a wonderful goodnight. It’s time for bed, to sleep a bit before he gets up... This truly (literally) is a 24/7 life and I still work three jobs (from home) on top of it!
In closing I say, my prayer is that what is to be will be, and we will ALL be strong enough to handle what happens. Much love to all...
I also want to thank you all for your support regarding Peter’s care and possible move to a home. It might be a few months or a year before a room is open. But your suggestions, support, and just caring helps me a lot.
No photo today. Too exhausted. Just a LONG post....
Nice having the workers come in Monday to Thursday, BUT I feel it’s more a hassle than a help. I get up at 8:30 to shower, dress, tidy up, and get Peter up at 9:30 for their arrival between 9:45-10:15. When the get here, I move him to sit on his Walker seat so they can then sponge wash and dress him. Then do the short exercises. 30-45 minutes later they are gone.
When not here, I sleep till 10 or so with Peter. Especially if I haven’t been able to sleep at night. He gets up sometimes every 30-60 minutes. In his mind if he wakes up he thinks he must need to pee. So he gets up. Most times he doesn’t have to. But I am awake with him each time.
Today, no worker coming over, I hoped to sleep in. Nope. He was up constantly since 4am! Finally I gave up and got up. I felt so upset and angry that I couldn’t sleep in! It carried through the day. Just felt out of sorts! Tired! Cranky!
Tonight I felt terrible because I was so angry that he stood up every 5-10 minutes to go to the bathroom. For years he hasn’t been able to pee into the toilet properly. So I decided I either clean each time, or I hold the urinal for him each time. I hate cleaning, so the urinal was my choice. But today I resented not being able to do anything else except cater to him getting up and down! It’s my lack of sleep and grumpy disposition today that caused me to feel like this.
Most days I just let it go. I put on music, dance, sing, hug him, get him to dance a bit, to smile. Today I had none of that. When I am down he is even more so. He mimics my mood. That’s part of dementia! When he is down he reacts even more with the getting up to pee (even if he doesn’t need to). It’s like it’s a familiar routine and he needs the familiar.
He doesn’t talk anymore. I know he is going to the bathroom, but I ask him where he is going. Most times he says nothing. Or he will say ‘I going to....’ He can’t find the words. He holds his hands up and moves them. I am supposed to know what he needs. Most times I do. Actually 99% I know. But somedays I am a gluten for punishment & I tell him to talk to me. He can’t. He gets frustrated and so do I. I know better. He doesn’t anymore.
It’s strange how we know things but still do the stupid things. Still get upset over things we know are happening and he can’t control. It’s like I am looking for that reason to be angry. Angry at this stupid, terrible, life sucking disease! It’s taken away my friend! I am so ‘pissed off’ about it and falsely get angry at him! Not his fault. But who else do you attack if not the one you love the most? Only it’s not fair to him.
He has gone to bed. I have a few minutes of quiet to write and let out my frustration. To tell myself to get it together and change my mood. I know we all control how we act and react. It’s our choices to be happy or angry regardless of the situation. But sometimes, I just don’t want to know the truth! I just want to be upset. To lash out because I feel it’s not fair that we have this life! I know it’s not just us. So many feel the same. This disease takes a grown adult and slowly turns them into adult children. He is almost like a 2 year old right now in his brain. Which makes me even angrier that this handsome, very intelligent, loving man is deteriorating before my eyes.
Then I wonder. How must he feel? Does he know? Is there a part of him that knows? I think so. Because when I cry, and say I’m so upset, he holds my hand, kisses it, says no as he wipes my tears, and then says he loves me. Then I feel so foolish. Why do I get mad at him? I need a punching bag that’s called ‘Dementia’ to yell at when I feel like this. Because he needs my love and understanding. Not my pain. He is no longer able to process and really understand.
I can see why most spouses and loved ones feel such anger. It’s easy to get into that mode. But oh so hard to comprehend what’s happening and get it turned around. Especially when you just feel so upset and you really want to lash out at the pain! If you don’t know that you can control your reactions, it becomes a never ending cycle of anger on top of anger. Then the person with dementia feels your mood and reacts the same way because they have become so much more sensitive to the mood of people! Now you have two angry people who can’t figure out how to stop. So I can see how it happens.
Luckily through my intuitive business, I have learned the how and why and I can stop the cycle. But, so many don’t know and then don’t understand why the anger never stops. I truly feel I am meant to go through this to learn how to help other care partners learn to handle this without the constant anger, resentment, and all the other negative emotions. Not saying we don’t ever have them. But learning what triggers them and how to turn it around and bring back the love, joy, and happiness regardless of the circumstances.
Much love to all..... 
So many things have Changed so much in the last 8 weeks!
So terribly sad 
Guess a shower here isn’t going to work anymore. Need to rethink how to do this.
He doesn’t comprehend most of what I say. It’s like he doesn’t understand. Which I think is true.
Get a lot of no for answers when he does answer. Even if he means yes.
Now he hardly speaks. I get a lot of hand gestures. When he does try to speak he forgets the words he wants.
I hear a full sentence once a day if I am lucky.
I ask questions he doesn’t answer. I ask again. No answer.
Asking him to stand up, sit down, move over, anything.... He doesn’t respond, just looks at me as if he has no idea what I said! Maybe he doesn’t.
To save a lot of cleaning, we use the hand held urinal.
Well tonight I was turning down the bed for him to sleep. He went into the bathroom. I went in to hold the urinal like normal. He was too fast. He was faced away from the toilet. Peed on the floor, tub, cupboards, wall, pants, socks, slippers.... most times I am always near and prevent these accidents!
I got upset. Then again realized it’s his brain - Doesn’t understand.
After I cleaned up, I cried and said how sorry I was I got upset.
He hugged me said it was okay!
I told him that I hate what this disease is doing to him.
Oct 3, 2021
He said yes, he can do a shower! Realistically? Nope!
Problems ... Sometimes he can, and sometimes he can’t move left side very well. Also can’t understand some things I ask him to do.
I put up the 2 suction cup handles on the walls, placed the non slip mat on the bottom and it was ready!
Get him to the bathtub. Took a while to get him to understand to hold the handles, then lift his leg over the 10 inch side into the tub. Once in there, He was holding tight to the handles and didn’t turn around. I realized he wasn’t going to let go to wash himself. I got him washed, rinsed, and then came the problem. How to get him out of the tub.
Asked him to turn around and get his leg lifted over the tub side. He said he can’t. Great!
I ask him to hold on properly. He is holding the curtain! It’s not strong enough to hold him. He isn’t understanding. I pry his hand off and get him to hold my shoulder. He is leaning on me. I somehow lift and get his one leg over and onto the floor. Meanwhile he is complaining he can’t do this. I eventually get his other leg lifted and over. Then try to turn him around to sit on the toilet seat. I realized standing isn’t going to work.
He doesn’t understand turn around. Move your legs. Eventually he is turned around. I say sit down. He doesn’t. Not comprehending. Again, I eventually get him sitting down.
Now I get the seated Walker to the bathroom door. Get Peter standing. Again to have him move the three steps out the door to the Walker. Not knowing what I am saying. Eventually he does move his legs. Then needed him to turn a quarter turn. Not understanding and left leg doesn’t want to move. After a while he is now ready to sit on the Walker seat. Again, he resists sitting down. Says he can’t. Doesn’t know what I want. Combination of all that. Eventually he sits with me pushing him back and down. Whew!
Wheel him out to the living area. Get him to dry off. Get him dressed into his housecoat again. No sense this late in the day dressing him in pants and shirt.
Now out of the Walker and to get him to sit on the couch. He isn’t close enough to sit down. I ask him to move his legs back toward the couch. Lift his feet to move back. He starts to move forward. I said no back. He isn’t catching what I say. He tries to sit down and to prevent him landing on the floor I push his body back so he lands on the couch. He isn’t happy I did that. But the alternative, falling, was not an option.
Guess a shower here isn’t going to work anymore. So many things have Changed so much in the last 6 weeks! So terribly sad 
Our Dementia Journey - Those Difficult Decisions!
Tues Sept 21 at 9am
Peter woke and could not move left leg or body to stand up properly. Body lean heavy to left. Talking gibberish. Gave 2asa He dropped one. Got him another. I think he ended up with just one. Found another on the floor later.
Couldn’t stand up. I could not hold him.
His left leg was way off ahead. Did not know how to move it back to stand.
Got him back on bed and turned over to sleep for a few min. Then had to push him up onto bed. His legs were off the bottom edge.
He pushed a bit on my body with his legs. I pushed his bum up. But he wasn’t comprehending what I was asking him to do.
Eventually got him closer to middle of bed. He slept a bit. 30 min later Asa helped a bit. He talked gibberish but could sort of stand. Peed. Then back into bed.
I suddenly realized with tears in my eyes and heart. If he can’t move. I can’t help him at home. He will have to go to a home. I feel devastated. If he loses movement I can’t move him! I feel heartbroken 
I guess I need to figure out what home would help with dementia the best…. How do I figure that out?? What do I do? I don’t want him in a home. But, if he can’t move. I can’t lift him!!! So far we have been lucky. His movement came back. What happens when it doesn’t?
Somedays can be so difficult. Coming to the realization that we need to take another step. Journeying to another path that we didn’t expect. So emotional. So difficult. So darn unfair! But, it happens and we learn to come to terms with the decisions that are required. As tough as they may be.
Video on YouTube - https://youtu.be/PZQMAwKK7zk
