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    • CommentAuthorbhv
    • CommentTimeApr 24th 2018
     
    Oh gosh, hope that doesn't happen. Hb might not even be able to tell me about a headache.

    I dropped him at day care and spent two whole hours at the golf course practicing. Hitting the ball pretty straight. Not very far, but straight. A man even asked me some questions and we had an interesting conversation about club fitting. It was fun.
    • CommentAuthorJan K
    • CommentTimeApr 24th 2018
     
    This poem was in Maria Shriver's new book, I've Been Thinking. I thought I'd share it in case it spoke to anyone else like it did to me.

    THE JOURNEY -

    BY MARY OLIVER, from Dream Work

    One day you finally knew
    what you had to do, and began,
    though the voices around you
    kept shouting
    their bad advice -
    though the whole house
    began to tremble
    and you felt the old tug
    at your ankles.
    "Mend my life!"
    each voice cried.
    But you didn't stop.
    You knew what you had to do,
    though the wind pried
    with its stiff fingers
    at the very foundations -
    though their melancholy
    was terrible.
    It was already late
    enough, and a wild night,
    and the road full of fallen
    branches and stones.
    But little by little,
    as you left their voices behind,
    the stars began to burn
    though the sheets of clouds,
    and there was a new voice,
    which you slowly
    recognized as your own,
    that kept you company
    as you strode deeper and deeper
    into the world,
    determined to do
    the only thing you could do -
    determined to save
    the only life you could save.
    • CommentAuthormyrtle*
    • CommentTimeApr 24th 2018
     
    Wow! That is beautiful. Thanks, Jan K.
    • CommentAuthorbhv
    • CommentTimeApr 24th 2018
     
    Ditto. WOW. I think I will have to print that one out too. Thanks Jan K
  1.  
    That has always been one of my favorites.

    Bronchoscopy this morning--walked up there at 7, cabbed it home because they wouldn't let me walk home. Home at 9am. Easy peasy. They put you to sleep.
    • CommentAuthorWolf
    • CommentTimeApr 25th 2018
     
    That isn't just a poem Mary Oliver wrote. That's how it was.

    Journeys Somewhere Else was what I called the thread where I talked about the journey Mary Oliver has written beautifully about.

    The reason I say it's not just a poem is that this is the only other person who had the same outlook, the same understanding of what she had to do, and the same experiences I did - and who said so. She's the only other person who also talked about recognizing herself returning and staying on a road with purpose to achieve her goal, ignoring the fallen branches and melancholies and bad advices the road was full of.

    There is no road of course and there is no journey to anywhere physical. There is a transformation into someone changed where she doesn't speak about any reward or arrival any more than I have. There is only the same seriousness and dedication we give to them applied to saving ourselves, because I was willing to die for her if that's what it took, but never to throw my life away.

    Mary Oliver is a thought smith. She stays purely on the struggle and the determination to save the only life she could save. Never a hint of the other side of that same coin which is that Mary was determined to save herself. That would sound selfish. Yet saving herself was the thing she knew she had to do. Not one word about what that meant except to be in a better state. I am not alone.

    Thanks for posting that Jan K.
    •  
      CommentAuthorCharlotte
    • CommentTimeApr 25th 2018
     
    Well, I finally did it. With my husband's family history and mine, I wonder about me. I sent away for the APOE genetic test kit. It checks for APOE 2, 3, and 4. E2 and E3 are good to have as they reduce risk for cardiovascular disease and/or late onset AD. Lack of E4 means low risk (25%), one 50%, 2 - 75% chance of late onset AD. Doesn't mean you will get it, but more likely. More important right now is those genes affected your chances of cardiovascular disease. I am trying to find the information I read last year where with one of those genes you should not take a statin drug with because it will make it worse not better.

    Last month when the respite woman failed to show up then I found out she had called the woman who she answers to but that person had not forwarded it to the scheduler, I was really angry. I told her I would not do it anymore for now. Well, last night a woman shows up from them - caught me by surprise. She is really nice and understood when I explained and why I was surprised. I could have had her stay and leave but the plans I had for dinner required me to be her to make. I know, could put off for a night and let him have P/B sandwich! Thankfully going by us was on her way home, so she had not gone out of her way. I will call today and see if I can get her next month. I really liked her the short time we talked.

    Went back to PT yesterday for my knee. The three weeks I took off it really got to hurting. I tried that KT tape but didn't really help. I got to thinking - I was still doing the exercises (some anyway) but the difference was the TENS (electro stimulation) I would have afterwards. Got it yesterday and my knee feels so much better. So - I ordered my own unit since I will only be going once a week and only long enough to get the exercises down. Figured I could use it on my hurting right arm and tense neck muscles too. If the TENS unit helps I might stop earlier.

    so cute - Dakota the siberian husky next door, is out laying on the concrete sleeping in the sun. Sage, the cat, is laying on the porch. Jasmine is in her bed in the house even though the door is wide open (love this nice weather). Dakota is the dog that would love to eat cats but he will just sit and watch her. She is on leash so can't go far, but when she is sitting on the porch he will often just stand and stare at her even when he is not on leash (which he is not right now). He knows he will face the wrath of mom and dad if he should attack her - not to mention mine! When Art is gone to DC I will leave the door open so she can go in and out - even did it when I was gone doing laundry yesterday. I used a different leash so she can get to her food when she comes in but not long enough to get tangled under the MH. She seems to like going round and round the jacks getting tangled in the spring on it or up over the axle a couple times!! She is funny when she gets herself tangled she will on the porch she will give this pitiful little cry 'help me mommy'!

    The weather had been nice - not too hot although today and tomorrow are suppose to be in the upper 80s which means by late afternoon it gets quite warm in here. Friday the new a/c in the front is suppose to be installed then we will have one to run when it gets hot.
    • CommentAuthorbhv
    • CommentTimeApr 25th 2018
     
    Your cat has so much personality.
    One of the Day Care nurses husband has dementia. He has a service dog that looks a lot like our little dog. Rosie died several years ago. And last summer our Doberman died. I decided I don't want another dog. I got new carpet thinking with no dogs I didn't have to worry about anyone peeing on the carpet. No such luck. Hb peed on carpet this morning. He was aggressive with another Day Care participant today. They handled it by asking him to take care of Brian's dog while Brian went to an appointment. Brian let him keep holding her til I got there. I had some trouble getting him to come with me without the dog. He kept saying we want her. Brian hid her behind his legs!
    I might think about a service dog. They recommended Paws for Patriots. But I really don't want anything more to take care of. I am having enough trouble keeping the hummingbird and oriole feeders full.
    •  
      CommentAuthorCharlotte
    • CommentTimeApr 25th 2018
     
    Personally I would not get a dog. Let that be something he looks forward to at day care. Even if you got a dog whose to say he would respond the same way? I know Rick Phelps, the guy who started Memory People on Facebook, has a service dog especially trained for those with dementia.

    If I had it to do over I would not have gotten a dog. My hope was he would take her for walks, but the first year he wanted nothing to do with her so it all fell on me. He will take her out in the evenings but he doesn't notice if she poops so I have to walk the yard daily and usually find a pile or two. She is so different from when we had dogs from a puppy. She was two when we adopted her. She always acts like I am going to hit her even when giving her food or treats. I am assuming she was beaten or treated badly before we got her. I am seriously considering rehoming her and just keeping the cat.
    • CommentAuthormyrtle*
    • CommentTimeApr 26th 2018 edited
     
    I agree with Charlotte about the dog.

    Charlotte, What would happen if Dakota got loose while Sage is on her leash? I'm worried that she would not be able to run away from him or defend herself.
    • CommentAuthorRodstar43
    • CommentTimeApr 26th 2018
     
    my wife is now struggling with telling time and who i am sometimes. Moday My right eye went blind. Two. and half weeks after cataract surgery. A rare infection. had emergency surgery Tuesday. There is Twenty percent chance I will see with that eye again. I drug DW with me everwhere. DIL drove. Always drama of some sort.
  2.  
    Oh my goodness, Rodstar. That is terrible--so sorry you are going through this with your eye. Do keep us updated--I am praying that you will be one of the twenty per cent. Yes, drama indeed. Drama you don't need with everything else you are dealing with.
    • CommentAuthorlindyloo*
    • CommentTimeApr 26th 2018
     
    Oh Rodstar, carrying you in my thoughts and prayers. May all go well with your eye. Do keep us updated.
    •  
      CommentAuthorCharlotte
    • CommentTimeApr 26th 2018
     
    Sorry about your eye. Is it me or do we all in the trenches seem to have the 'bad' luck? I hope it heals quickly and you will be able to see fine with it.

    Went by the other RV park to get the final info and arrange to move into. When I first inquired March 9th, she knew the year of my RV just said she needed pictures. Today turns out it is almost too old. Since the new owner bought it 5 years ago he is getting rid of all the older RVs. Anyone in there with an RV older than 2000 has to move or buy a newer one. (next year will be 2001). She knew the year when I inquired, said nothing about having to by a newer one next year. The pictures I sent she deleted and had crossed my name off the list - never bothered to let me know. When I asked her she didn't respond. So again, I get myself psyched up to move and bam - falls apart. I did email the manager of those senior apartments I was looking into asking how will it be handled when my husband dies and my income drops? Since the do subsidized rent on 30% of the units, would mine be adjusted then or would I have to wait until there was an opening in that list. She never answered back. I just can not believe how rude and/or unprofessional so many businesses are now days.

    Today is in the low 80s. Had to turn the back a/c on last night so we could go to sleep. After a while could not figure out why it kept turning off and the bedroom had not cooled down. Duh - have to open the ceiling vents dummy!!! Worked great after that! :-) Tomorrow is suppose to be 88 - great day to have the new a/c installed but that won't be until 2 which is before the late afternoon sun hits the windshield and really warms it up in here.
    • CommentAuthorbhv
    • CommentTimeApr 26th 2018
     
    Rodstar I just can't believe it! Good heavens I hope you are part of the 20%. It just ain't fair. Yeah I know no one promised us fair. But still....

    Charlotte, not fair to you either. Twit just crosses you off the list?? I am very glad the AC unit will be repkaced tomorrow.

    Day Care for hb was interesting this week. He was ok Tues and Thurs. Even participated in some activities. Wed he started cursing at one of the participants. Tues and Wed he went to frig for "beer" as soon as we came home. Worried me a bit cause that is only 2:30 in afternoon. But he has been losing interest in our afternoon "beer" on the patio. Today he went upstairs to bed when we got home. I closed the curtains. It will be interesting to see if/when he gets up.

    I did grocery shopping and rushed home to clean the pool filter today since I did algae treatment yesterday. It is a dirty messy job, but got it done just in time to change and go pick him up. Busy day for me so it was nice he slept for awhile. And here he is... he got up just as I started writing this.
    •  
      CommentAuthorCharlotte
    • CommentTimeApr 26th 2018
     
    Going to sleep right after getting home kind of extends your day care respite. Hope he goes to sleep tonight. Tomorrow no day care so get to sleep in!! Have you tried non-alcoholic beer for him?

    I posted a review on google. She responded they don't accept anything older than 10 years but she told me more than once 2000 was the cutoff. Her business ethics and the way she lies, glad I am not moving there.
    • CommentAuthormyrtle*
    • CommentTimeApr 26th 2018
     
    Oh, Rodstar, I am so sorry. Like the others, I'm hoping your eyesight will be OK.

    Charlotte, What a rotten thing to do to you. As you say, it may be for the best.
    • CommentAuthorbhv
    • CommentTimeApr 26th 2018
     
    Charlotte, he has.been on nonalcoholic "beer" for over a.year -- since the incident when I locked up all the booze in the house.
    • CommentAuthorNicky
    • CommentTimeApr 27th 2018
     
    Rodstar, I'm sorry to hear you're having all these problems. I certainly hope your eyesight returns. How long do you have to wait before you find out if your eyesight returns?
    • CommentAuthorRodstar43
    • CommentTimeApr 27th 2018
     
    update, just today i went from showdow of hand to counting fingers.. saw retna specialist who did surgery. He was amazed at my progress. today i have hope. i see cloudy things but in color. DW has traveled the thousand miles this week for my eye.
    Her cancer has found some new spots. Her dementia continues to unravel her. As long as she with me she is happy. my DIL drove 3 days this week and my son today. I am blessed.
    •  
      CommentAuthorCharlotte
    • CommentTimeApr 27th 2018
     
    that is great news Rod, prayers for continued progress.
    • CommentAuthorbhv
    • CommentTimeApr 27th 2018
     
    Oh Rodstar I am so relieved for you!
    • CommentAuthorNicky
    • CommentTimeApr 27th 2018
     
    Rodstar, so glad to hear the good news.
    • CommentAuthormyrtle*
    • CommentTimeApr 27th 2018
     
    Such good news, Rodstar!
  3.  
    Very good to hear the news this morning, Rodstar.
    •  
      CommentAuthorCharlotte
    • CommentTimeApr 28th 2018
     
    Well - since it doesn't look like we will be moving, had to go buy flowers! Bought a bag of potting soil, rescued a lavendar on close out, cherry tomato and 4 pack of purple petunias (they have a light fragrance). I also bought a lemon cucumber that I will plant among the flowers in the flower bed my neighbor and I have in the back just outside the park but gets watered by the park sprinklers. Hopefully her granddaughters will like them. Only got a grape cherry tomato because regular just don't do good in pots like cherry.

    Can't leave Sage out when it gets dark. She was out last night when about 9 I heard a cat fight. Ran out - she was tangled under the porch scared. Someone in the park has a siamese looking cat they let run loose. I have not seen it for awhile so figured it was one that was found dead a while back (someone probably poisoned them) but guess not. So now she sadly comes in when dark. I have been letting her stay out until I go to bed at 11 or midnight. We have a rope light along the side of the MH for light when I take the dog out. She likes to watch and wait for bugs to come then plays with them. The other night I watch her playing with a bug on the patio for over 1/2 hour until I brought her in. She did not like leaving her bug behind!

    Rod -= how you doing today?
    • CommentAuthormyrtle*
    • CommentTimeApr 29th 2018
     
    Charlotte, Your garden sounds lovely.
    • CommentAuthorRodstar43
    • CommentTimeApr 29th 2018
     
    It seems that every hour i improve a tad. It is hard to believe that 4 days ago i could not see my hand in front of my face with my right eye. And doctor said that i may never see out of that eye again. now i can see alot. it is cloudy but i can reconize a face. I am proving doctor wrong.. That emergenncy hour plus surgery was in the nick of time. Next i expect to see writing on my Kindle. Now if my chronic headaches would heal.
    •  
      CommentAuthorCharlotte
    • CommentTimeApr 29th 2018
     
    Rod, Praise the Lord! Hopefully once your eye is better the headaches would go away. Straining to see can cause headaches so hopefully that is what is causing yours.

    I got the tomato transplanted into its big pot and it is stored under the patio table for protection until it gets warmer. I stripped most of the branches off except the top too, that way it will grow more roots. I put the petunias in the hanging pot - they are purple with a slight fragrance. We have a satellite dish tripod from when we had DISH so I used it to hang the petunias on. Lavender got its bigger pot so hopefully it will reward me for rescuing it by growing up pretty! I put the cuke in a bigger pot so it can continue to grow until it stays warm enough to plant in the bed. I bought organic potting mix so now I am working to get rid of the manure smell on my hands (I hate gloves).

    They aerated the lawns the other day leaving those plugs all over. I actually got Art to rack them up. I had already done the area between us and the RV next to us. I hate those plugs laying there - looks like dog poop!
    • CommentAuthormyrtle*
    • CommentTimeApr 30th 2018
     
    Lavender is such a good choice. Even after it stops blooming, the leaves smell nice.

    elizabeth, how are you feeling?
  4.  
    Hi Myrtle. Yes, I'm a lavender-lover, too. I always like to hear about what Charlotte is doing with her gardening--I should really do some container gardening on my deck.

    I am actually feeling better, but still coughing the house down. I am hoping the bronchoscopy results show something definite, but the results are not back yet.
    •  
      CommentAuthorCharlotte
    • CommentTimeApr 30th 2018
     
    Yesterday we went to Costco. We were walking up and down the aisles when we came to a cart with two kids sitting in it hitting and screaming. The parents were about 10 feet away looking at something. He suddenly yells "where are the parents of these kids? You need to come take care of them'. I grabbed him and walked away quickly asking him why he did that. He said their screaming was hurting his ears. I said then walk away not cause a scene. I guess one can say he did what most of us want to but are afraid to do - tell the parents to quiet their kids up.

    Elizabeth, I sure hope they come up with a treatable answer sooner rather than later. I know you will agree this has gone on way too long.

    I was so glad to see Monday come. I can do pretty good dealing with him M-Th evenings, but after him being home all day Friday by Saturday I have had it.

    Had the 15,000 btu a/c put in on Friday. I turned it on while he was here - not happy with the air flow. It is suppose to give out 15% more air than the 13,500 we had. After 3 hours it should have been too cold in here but it was still around 88. I sent the repairman a message so he knows. The end of the week is suppose to get up in the upper 80s so will test it again. It has to be restricting the airflow. We have ducted a/c and the only vents getting a good airflow is the four in front of it - the ones that would be cooling where Art sits. I am the one that needs it since I run hotter than him. The ones behind barely have air coming out.

    Rod, how are you today?
    • CommentAuthorbhv
    • CommentTimeApr 30th 2018
     
    Hi Charlotte. I am with you about the weekend. It is getting more difficult to tolerate, but am experimenting with some ideas to change things up. More for me than for him. He seems to go with the flow.

    Tomorrow is Day Care.for three days. We switched to Depakote on Fri. Hope Day Care.goes ok. Seems to be better. He gets frustrated but I noticed that he took it out on his jeans.rather than trying to punch me. So am hopeful. But we are having difficulties with poop again. Very difficult to figure out. I am definitely sick of this poop.

    He is sleeping somewhat less than with the haldol. He is wayyyyy more confused, but I think that started before the depakote. He took off his socks last night then put on the shoes. Then tried to put the socks on over the shoes. He has been constantly fooling with the shoes for several years now. But now he doesn't always get the correct shoe on the correct foot and mixes several.different pairs of shoes up.

    He is having more difficulty following directions. His hands are shaking more, but awhile ago his dr said it is not parkinson's. He is doing a strange thing with his tongue. Reminds me of a lizard. Keeps sticking it out and sometimes spitting a bit. He has water next to his chair. Doesn't seem to drink much. But urine is light yellow so doesn't appear to be dehydrated. He is losing interest in the nonalcoholic beer. Doesn't even finish one. Eating less. Walking even slower. Not following me as much into the kitchen. I seriously don't miss that behavior!
    • CommentAuthormyrtle*
    • CommentTimeMay 1st 2018
     
    I sure do remember those weekends in the days when my husband went to day care. After several days of respite from the craziness, I dreaded the weekend. You guys have my sympathy.
    • CommentAuthorlindyloo*
    • CommentTimeMay 1st 2018 edited
     
    Some of those physical symptoms you are mentioning, bhv, Bonnie, are most likely side effects of the psychotropic meds he was taking. Hopefully they will decline now he is on a different med.

    Idea regarding shoes. Only have one pair available to him. Hide the rest in a cupboard or something. But this won't help problem with right versus left shoe, only that he won't have mismatched shoes.

    I remember when my partner began to eat less and less. For nine months I knew she was not eating enough to sustain life. When she was not able to feed herself I took on the chore of feeding her - very reluctantly you all may remember - but while I always had food available, and offered it to her by fork or spoon, I never insisted she eat when she was not interested. Closed mouth, okay, then that is enough for right now. I refused to worry, because this disease is a terminal one. And only a feeding tube would solve the issue. And that was not an option. The people in the day program will notice this decline too. Let them know that it is the same at home. Let the medical professionals know too. That you are offering food, but he is eating less and less. And if anyone suggests feeding tube, do all your research first, including getting input from this website.

    You continue in my thoughts and prayers.
    • CommentAuthorbhv
    • CommentTimeMay 1st 2018
     
    Thanks Lindylou, I have your discussions about feeding in my mind all the time.

    I took him to Day Care today. The look on his face when I was leaving was pitiful. I almost took him home. Spoke with the nurse when I picked him up. They basically have someone with him all day. This morning he was angry and keot pacing so Sandra just followed him around. She kind of forced him to eat lunch. He spent the afternoon in the employees break room. He said he had to take a.break from all the flying he did. They say he speaks in sentences and they understand him and everyne had fun with him in the break room. I am surprised they want him to keep coming. We discussed perhaps changing the days. Friday is slow. She says to give it a little more time with the meds. Tomorrow he can spend a.little time with Brian's service dog. And I am going out to lunch with a.girlfriend.