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    • CommentAuthorJan K
    • CommentTimeApr 1st 2016
     
    Recently we got DH some new baseball caps from a big shelf of caps in a store we frequent. He wore one when we went out to run errands. When we got home, he noticed that there was a big sticker on the front, describing the athletic licensing agreement. He took that sticker off, and put the hat aside while we ate dinner. Later I looked over, and sticking out of the top of the hat was that little plastic tag and hook used to hang merchandise from a wire rack! It looked like an antenna.

    Something like this would have been very embarrassing in a life prior to caregiving. Now I'm just grateful that the "wardrobe malfunction" didn't involve something much worse.
    • CommentAuthorRona
    • CommentTimeApr 1st 2016
     
    I never thought you could put a jacket on upside down but it has happened a couple of times now. That is a wardrobe malfunction but you know, Lisa is oblivious so does it really matter? Only to me so I help her get it on right. I often wonder, I mean the coat upside down is a bit out there but should I correct if thinks are inside out or backwards or shoes on wrong feet? When I do sometimes she just gets upset should I just let it go?
    • CommentAuthorMim
    • CommentTimeApr 1st 2016 edited
     
    Jan K, that's funny! :D

    Rona, shoes on the wrong feet could be hurtful to her, so I would probably correct that...other things, backwards or inside out, probably aren't that big of a problem, depending on how truly obvious it is. The jacket upside down? Yeah, I think I'd have to correct that one :)
    • CommentAuthorMim
    • CommentTimeApr 1st 2016
     
    I just thought I'd bring things up to date. I talked about my own health matters in a previous thread, so here's the situation as it stands now. There was reason to believe that something was up with my gall bladder or pancreas. After testing, endoscopy, CT scan, blood work, etc. it was discovered that I have a rapidly enlarging uterus, most likely due to a tumor. So after I see the OB/GYN on Monday, I will know more about impending surgery. In the meantime, I'm trying to find a kind of an emergency respite care for Dan, think I found one with the help of the VA, am going to visit it on Monday afternoon. It will take about a week for the VA approval, shouldn't be a problem, so I figure surgery will be around the second week of April. This is really going to throw him for a loop, but there is no other choice. I expect him to show a decline when I get him back home.

    Anyway, I can't postpone surgery for very long, this "thing" seems to be growing quickly in my estimation - I can tell!

    Can anyone tell me their experience after having their spouse in respite care for several days? What happened to you/yours when they finally came home?
    • CommentAuthorCharlotte
    • CommentTimeApr 1st 2016
     
    Fortunately when I had my hysterectomy in 2014 my sister came and parked across from us. I left notes all over the motorhome telling him where I was and where my sister was. I was only gone overnight and hb was not as far along as your husband. I will say if you have a hysterectomy, try for the robotic if at all possible. they can still do that depending on the size of the tumor which hopefully is just a fast growing non-malignant fibroid. If there is any chance it is cancer, I would have a gyn/oncologist do the surgery. I had no idea mine had progressed to cancer but I don't know if it would have made a difference. For me traveling the 3 hours to the gyn/onc, three nights of hotel, etc was not an option as far as I was concerned.
    • CommentAuthorJan K
    • CommentTimeApr 1st 2016
     
    Mim,

    I'm sorry to hear about your health issues. This is exactly what every caregiver fears.

    DH has been in respite a number of times. What helped is to pack comfort items for him--his pillow and blanket, snacks, favorite clothes, etc. so he feels more at home. I also sent a calendar page so he could cross off the days until he came home. If he does not have a private bath with shower, shower shoes are a necessity. I make him a note of when meals are served, and help him find the dining room.

    There was some disorientation when he came home, which was overcome by being glad to be here. I don't remember what stage your husband is in. The whole thing does sort of depend on how determined they are to hate being there. Yes, it will be hard, but like you said, there is no other choice.

    Please plan this respite for what is best for you. Several days doesn't seem like it would be enough for you to be back up on your feet, let along caring for someone else.

    p.s. Usually when DH goes to respite, I'm responsible for the meds while he is there. You might want to talk to them about that, and get their suggestions for other things for him to have from home. They usually want everything labeled with the person's name.

    Please keep us posted on how you are doing.
    • CommentAuthorCharlotte
    • CommentTimeApr 1st 2016
     
    Jan K is right, a few days might not be enough. If you have to have a hysterectomy,, there is 6 weeks with a 10 pound limit for weight-or nothing heavier than a gallon of milk. Also, no pushing vacuum cleaner. So once you find out what they are doing, you might need a longer respite and then in-home help.
  1.  
    Mim, I agree with others that you need to leave him there long enough for you to really recuperate. I hope they will let you do that. Put his name on everything; it is unbelievable how their stuff disappears in facilities. For his clothing, just use a black fine point sharpie permanent marker. I don't know what meds Dan is on, but when you send them, make sure you send enough, or count them and get his refills when needed. When Larry was in Park Vista (I don't recommend that place--can discuss privately if need be), I only sent one bottle of eye drops even though I had an additional unopened box at home. So instead of calling me to tell me they were running out, they ordered him another bottle of eye drops from the pharmacy and I had to pay $100 out of pocket. Infuriating. I don't think Dan is nearly as bad as Larry was when he went to respite that one time, but I would try to have friends or family lined up to go and visit him and "spy" on things to make sure all is well--just letting you rest and recuperate.
    • CommentAuthorWolf
    • CommentTimeApr 2nd 2016
     
    I'm in a winter wonderland. We've had about 5 inches of snow so far and it keeps coming down. All the branches are piled high and the light is that uniform blue/gray colour. You can't tell the horizon from the sky. I've got everything I need (almost) and am as snug as a bug in a rug.

    It won't last at all but this April snowfall is probably the prettiest of a largely snow free year. I pay a service to plow out my place and this year they hardly had to come at all. It doesn't matter because everything comes around I hear. I hope that's true of x-caregivers too.
    • CommentAuthorCharlotte
    • CommentTimeApr 2nd 2016
     
    We were at 80 yesterday, same today - lots of sunshine. The park is still a mess with tumbleweed from the high winds from the north earlier this week. The winds are suppose to be stronger coming from the south tomorrow which hopefully will blow many back out of the park. That is my biggest complaint with the park - they don't seem to care about the mess wind storms leave. They say it is the responsibility of the residents to clean their lot, so the tumbleweed sits until the next big winds. Jasmine hates to go walking in the grass now because of the broken twigs and stickers from the tumbleweed. We did rake our area to help with that but even the road that we walk on has a lot. Oh well.
    • CommentAuthorCharlotte
    • CommentTimeApr 5th 2016
     
    Will be interesting - I emailed my daughter today with her dad's question the other day. I was going through a drawer and found pictures her two oldest had drawn for her that I never got mailed years ago. When I mentioned them, he asked if she were still alive. I told him yes that she moved to TN 10 years ago and has not been back. As I am typing this I am wondering if he were thinking about his sister who died two years ago from AD. Oh well, I sent it to my daughter to see what kind of reaction she would have. No matter what, we always went to see my mom at least once every 3 months even though it was a 6 hour drive one way and my mom and me had a lot of problems. We always made sure we saw his parents every 18-24 months usually driving non-stop cause it was cheaper (remember they lived 3200 miles from us).

    Today is only in the 60s but by Thursday suppose to be up in the 80s. Trying not to use the a/c. Have PT today - my shoulders are a little better but my knee that I fell on is slow. The problem is not just the knee but my ankle and shin swelling. I have been wearing my compression socks which is helping some. Guess it is all part of the healing process.
    • CommentAuthorCharlotte
    • CommentTimeApr 8th 2016
     
    Lesson learned: turn a/c on before you leave. I had my 'Caregiver Tools' class today (Aging and Long Term Care want me to take it). When I got home at 4 the temp in the MH was 94 degrees. He is sitting in here sleeping and the dog was panting. Next time when it is warm out (was 82) turn on a/c when leaving because he will not do anything about it, even open the door.
  2.  
    We have a couple inches of snow on the ground with it still snowing. Temp is 29 or so. Going down to 14 tonight. I'm moving out to Charlotte's area.
    • CommentAuthorMim
    • CommentTimeApr 9th 2016
     
    Elizabeth, how about South? :)
    • CommentAuthorCharlotte
    • CommentTimeApr 9th 2016
     
    I am so happy to be back in shorts. Art is still in long pants and sweat shirt until late in the day then he changes but I put the shorts on first thing even if it is still chilly.
  3.  
    Down coat, knit wool hat, lined leather gloves, waterproof, heavy snow boots here.

    Charlotte, don't tell me another word. If you are in sandals and tank top, I couldn't stand to hear it.
  4.  
    Mim, what is going on with you and Dan?
    • CommentAuthorCharlotte
    • CommentTimeApr 9th 2016 edited
     
    We saw the snow when watching the Philadelphia Flyers hockey game. Was hard to believe it was snowing like that while sitting here trying not to turn the a/c on. No, I don't wear tank tops but I do have shorts, flip flops and cotton shirt on.

    I love this weather but it also means the snowpack is melting. Doesn't seem to matter whether I live on the west or east side of the state, you are always praying for lots of snow in the mountains and pray it doesn't melt off too soon.
    • CommentAuthorMim
    • CommentTimeApr 9th 2016
     
    Elizabeth, things are racing wildly for me at the moment. Have had several medical tests/biopsies, waiting for results, but I'm beginning to panic. This "thing" in my uterus/belly is growing I think by the day. I need to get Dan in respite care ASAP, even if we have to pay for the first week ourselves before the VA thing gets approved. I think I'm going to need surgery rather quickly & I'm probably looking at Cleveland Clinic. Something must be done! The one facility in Salem hasn't returned my call, but I only called Friday. Monday, I'm going to talk to the doctor, call the respite care home again, call a number the social worker gave me for Medicaid info....so many things to take care of. I never dreamed that this would be revolving around my own health instead of Dan's. Thought I still had time to get things in order for him....WRONG! Of course I'm planning this for Monday, hoping I won't end up in the emergency room at some point!

    He's doing more strange things, tonight in his quest to nibble on something (right after supper of chicken, potatoes & salad) he was eating one of those teenie, tiny potatoes out of the bag - raw. He puts his dirty coffee cup back in the cupboard, had my elastic waist pull on denim pants on the other day, so many oddities cropping up. He does seem to enjoy his one day a week daycare, once I get him out of bed & listen to complaints, moans, groans, etc. He does get a thorough shower once a week now, but that's been a little dicey for us - a story for another time.

    That's it from my frazzled corner of the world! By the way, I've lost your email address & mine shows up very differently - new hard drive & I lost almost everything!
    • CommentAuthorCharlotte
    • CommentTimeApr 9th 2016
     
    Mim - so sorry this is happening. It has got to be terrifying for you to not have answers. I am believing it is a nasty fibroid growing fast. There have been women on the hystersisters.com that have experience the same type of rapid growth. Most it turns out to be a fibroid. But, as you know, once past menopause it can be anything, but I am still going to believe whatever it is, it is benign.
  5.  
    Mim, I have your phone number and will touch base. It's almost midnight now, so I won't call tonight.
    • CommentAuthormyrtle*
    • CommentTimeApr 10th 2016
     
    OMG, Mim. I am wishing you the best, both with getting Dan situated and with your surgery. I am so glad you have access to the Cleveland Clinic.
    • CommentAuthorLindylou*
    • CommentTimeApr 10th 2016
     
    My thoughts and prayers are with you, Mim. This is a rough road right now.
    • CommentAuthorMim
    • CommentTimeApr 10th 2016
     
    Thanks Elizabeth - got it!

    Thanks to the rest of you for the wonderful thoughts & prayers...Monday will be a day spent on the telephone, which I hate doing! Will update as time allows.
    • CommentAuthorFiona68
    • CommentTimeApr 12th 2016
     
    Mim, my thoughts are with you as you struggle to get everything set up for your husband, so that you can have your surgery and the appropriate time for recovery. On a lighter note, my hysterectomy was the best thing I ever did. Have felt much more healthy ever since. I hope things go well.
    • CommentAuthorCharlotte
    • CommentTimeApr 12th 2016
     
    My knee was not going down so went to the doctor today. She drained almost 60cc of blood from the lump on the upper part of my knee. She said no guarantee it won't come back but hope it won't. It didn't really hurt like she said it would. Was fascinating watching her withdraw the blood wondering if it would ever end!

    Then went to the first of 4 free counseling sessions. I had 11 written down - they had 10 so we only had a 1/2 hour. Was good I went anyway. Found out if you have VA medical, there is dental insurance veterans can buy for $12 a month. Also, if I take his DD214 in I can get 12 more counseling sessions for me through the VA and then eligible for 1 a month.
  6.  
    "Fascinating"??!! Wow, Charlotte, you are one tough lady. If it were me, you'd have to catch me first! lol

    Sometimes being a veteran does come in handy. I used my GI bill for school, and Larry used VA benefits to get a loan for a house.
    • CommentAuthorCharlotte
    • CommentTimeApr 18th 2016
     
    Saturday my nephew and his wife took my sister to their house. They fixed up the spare bedroom for her. The first night went fine, yesterday was OK but all h**l broke loose today. She got into a big argument with my nephew, scared his wife so bad she doesn't want my sister at their house, so he took her back home tonight. I wanted to say things like 'I told you so', 'I warned you', etc but did not. I was very nice to her. I said she was probably terrified and scared being in unfamiliar surroundings, nothing was familiar to her. That is can take a couple weeks to a few months to adjust to new surroundings. My sister did not recognize my niece-in-law, thought our mom who died in 2002 was still alive, etc. They were shocked by her confusion but when you consider the drastic change they did in her life, who wouldn't be confused and scared.

    When she mentioned failing I told her "don't beat yourself up. Dealing with dementia patients is hard and often 'trial and error' work.". She replied back "Yes, I am.not cut out for it....very scary. Hope it (referring to dementia) passes the rest of us right on bye.. Thank you Charlotte."

    They took her back home. I don't know if my nephew just left or waited until my brother got home. I hope the confusion and loss over the weekend does not last. They have a meeting with some lady on Wednesday to start the process of placement. I have been down for a long time but this hit me hard. I am loosing my husband, my sister and a brother to this horrid disease. To be honest loosing my sister and brother hurts more than my husband. Maybe part of it is cause it has been going on with my husband longer.

    Weather has been hot - mid 80s, winds not too bad. Last Friday the landscape guys threw a rock through my driver's side window with their weedeater. I had glass inside and out. I warned the guy the week before about the rocks and his attitude was 'so what' regarding the broken window. Thankfully I have towels on my seats so the glass was on it. I was able to get it fixed that day paid for by the Landscape company. I asked the lady how much it will cost them. She said $210. I asked 'is that all? Can't you add a little more so it hurts more?' I also had a ding on my windshield fixed - it cost $60 which my insurance company paid.
  7.  
    Well, they say things go in three's. So let's hope nobody else in your family gets demented. It's a lot to deal with...I was just thinking again about how devastating and long-lasting dementias are, when my 89-year-old neighbor died ten days ago. He had been living independently, normal-normal, until he had a stroke in November. Was hospitalized, gone to Rehab. and all that, but was expected to come home and live in the downstairs of the house. (Wife had died fairly quickly of two brain tumors last year.) Anyway, he had some setbacks with bleeding ulcers, and died fairly unexpectedly in the Rehab. I couldn't help thinking last year and then this year how care, love, and support just blossomed among friends, family, and neighbors to help this elderly couple. Neither was demented, and they were lovely people. But knowing what I know...had it been Alzheimers, they would not have received a fraction of the support that they did. I'm not narking about it...just saying. I liked them both, and am very sorry they are both gone now. Hope I get decent neighbors when their house is sold.

    It's been lovely here--cool nights and sunny, warm days. Pup thoroughly approves of spring. He was born Oct. 19, so this is his first experience with this kind of weather. You can just see him loving it--rolling in the grass chewing a stick, with a big smile on his face. So many interesting things to sniff. There have been some gorgeous, clear nights, too. I get the "Spot the Station" emails, so I always know when it's going over...love to go outside and watch it.

    The landscapers sound like a bunch of idiots. At least they ought to pretend to care, just in terms of customer service and public relations.
    • CommentAuthorCharlotte
    • CommentTimeApr 21st 2016
     
    Went back to the doctor today about my knee - actually saw my primary today. He was not thrilled about draining the blood again but got 30cc - now maybe the bleeding will stop and it will heal after a month. He tried telling me it would re-absorb which I told him it had not changed in over a week. I wonder why I make an appointment. Last year and this year after going to the exam room, I had to wait an hour past my appt time. They never come in to let you know that he is delayed or how much longer,etc. When I saw the PA 3 weeks ago and the NP last week, I saw them within 10 minutes of my appointment time.

    I was glad I had the appointment because last night I had a repeat of a couple months ago. The first time I got up to go to bed and my left arm and leg were numb. It took until the next morning before it was better, 24 hours to go away. Last night I got up from the chair and felt them going numb and was light headed. I went back and laid down and it cleared up in about a half hour. Was really scary. Bothered me the doctor did not seem concerned. He just said if it kept happening them maybe do some testing, find out maybe there is a short circuit somewhere. I liked this doctor the first year I had him, which was the year I had the cancer. Last year and this year I don't care for his attitude. I guess if he is running an hour or more behind each time, he is overbooked. I can accept pressure on nerve in my lower back affecting my leg, but my arm puzzles me. I have no pain.

    Our new neighbor moved in. Haven't met him yet. He is suppose to have two dogs, one with only three legs. I think that is the one that was hanging out the window looking at us!! The days have been in the upper 80s, near 90, but thankfully the weekend is suppose to cool off some which hopefully will slow down the snow melt in the mountains. Art is driving me crazy today. He is bored so keeps asking if he ate lunch.
  8.  
    Charlotte, it sounds like you might need a little more follow up on the arm and leg numbness. Maybe you need to get the MD to make a referral to a specialist.
    • CommentAuthormyrtle*
    • CommentTimeApr 24th 2016
     
    Yesterday I cleaned out our backyard toolshed and made it into a little haven for myself. I moved a lot of unnecessary junk (driveway sealer, leaf blower with burnt-out motor, cracked hoses, broken spreader, etc.) into the garage to be taken away by junk haulers. I set up a seating area in front of the window with an old painted table and a wicker chair. I brought a stained pine bookcase up from the basement and used it to hold clay pots, garden books, a wooden cranberry picker, a metal rabbit, etc. I hung a cat-themed wind chime next to the table. Everything decorative that I put in there was stuff that I had saved because I liked it. There is still a lot of utilitarian stuff in the shed but it all looks fine. This really put me in a good mood.
    • CommentAuthorCharlotte
    • CommentTimeApr 25th 2016
     
    Sounds like a great move for you - a place for some R&R. Great job.
    • CommentAuthorLindylou*
    • CommentTimeApr 25th 2016
     
    Happy spring, Myrtle.
  9.  
    The toolshed sounds great, Myrtle.
    • CommentAuthorCharlotte
    • CommentTimeApr 25th 2016
     
    Anyone seen that commercial for Charter Spectrum where the women take over the 'man cave' and the men have to go to the ''she shed'? That is what Myrtle is making - a 'she shed'!
    • CommentAuthormyrtle*
    • CommentTimeApr 25th 2016
     
    Charlotte, I looked up "she shed" and was amazed at what I saw. Some of them have couches, curtains, and even chandeliers. My shed is nowhere near that elegant. (Actually, my house is nowhere near that elegant!) It's really just a tool and potting shed but the nice thing about it is that because of the whimsical decorations, it gives me something fun to think about even when I'm not in it.
  10.  
    Oh, come on, Myrtle, put a chandelier in there. And remember what Joan Rivers used to say when furnishing her place, "If Louis the Fourteenth didn't touch it, I don't want it."

    Hmmmm. I'm visualizing a fine, hand-knotted Persian rug, lots of mahogany, some Old Masters paintings, and custom draperies.
    •  
      CommentAuthormary75*
    • CommentTimeApr 28th 2016
     
    There has been so little activity that I'm just testing to see if the site is up and running.
    •  
      CommentAuthormary75*
    • CommentTimeApr 28th 2016
     
    Well, it went through.
    • CommentAuthormyrtle*
    • CommentTimeApr 28th 2016
     
    mary75*, I thought the same thing, but I did not post because I did not want to hog the site. However, now that I am here, I will say that I realized this week that the beginning of Spring and gardening season is giving me a window of opportunity to drag myself out of this seemingly unending depression. I hope to do this by doing one thing every day, even something small, that requires me to put my hands in the earth or on a plant. Since I have to devote most of my time to my day job, I will have to make an effort to carve out the time but I will do it. Today's job is to cut back the lavender. (Lavender is marginally hardy here but I have grown it with great success when I put sand in the planting hole and locate the plant at the intersection of two stone or concrete paths.)

    On the subject of activity, I wonder whether new members, whose spouses are at earlier stages of the disease, might be more interested in problem-solving posts than in talking about depression (as I just did) and grief.
  11.  
    I was chatting to a man in the park who usually walks with a woman--a pleasant couple who always say hello to Bandit and chat a bit. The man was just telling me that the woman cares for her husband who has had Alzheimers for nine years--says the family doesn't help them, and she is pretty much on her own. Needless to say, I am going to write down the address for this website and give it to her the next time I see her in the park.

    Myrtle, I would talk about whatever you want to talk about. Whatever the current issues are for whoever is reading will show up and be addressed by people who know how to help. Lord knows we know more about it than we want to.

    I've been wondering if my second year of widowhood experiences and feelings are getting a little too removed from straight Alzheimer caregiver experiences. But so much of my life now still relates back to what AD did to me...I will just request that if folks on this site think I am getting too off-topic, you let me know. Sometimes trying to regain my life leads me in some maybe irrelevant directions.
  12.  
    Mary and Myrtle
    .....Yes ... it seems to be quiet around here. So I'll tell you what I do about that.....
    When I first came here I used Wolf's suggestion and wrote my blogs in notepad and then
    copied them here. So now I have over 100 of them saved on my notepad and I enjoy going back
    over them. It's almost like they were written by someone else or something that I had dreamed.
    And still they are so meaningful to me.
    .....I found this blog which I had written a long time ago in response to a topic about "Being Alone".
    It was marked NEVER SENT....
    ....I think the reason that I never sent it was that it seems as though some of you enjoy being alone and I thought it might
    offend someone, But now that I'm more familiar with this site, I'm thinking that it should be OK.....So here it is.....
    ---------------------------------------------------------------------------------------------------------------------------------------------------------
    ....I've been following this thread as I do every thread and wondering if I have anything of value to offer here. So here are my
    thoughts about being alone.
    ....Actually I really can't understand the problem, because in all my 94 years I've never felt alone. Both Helen and I come
    from big loving families, but other than relatives, we had so many friends, and this discussion got me started thinking about
    where they all came from.
    ....First there were our church friends. We were not very religious in our later years but we had fun RV'ing and camping with
    the Trinity Travelers. Some caregivers here have mentioned the church as a wonderful source for friends
    ....Next, was the Lion's Club. I was a member for almost 60 years, and after many years of social activities, conventions,
    fund raisers and such our families grew very close. Our club always had a sunshine chairman who would keep track of
    anyone ill or in need and even introverts never lacked for Lions friends. Service clubs are a great source of friends. I don't
    think anyone on this site has ever mentioned belonging to a service club.
    ....Next, are the friends I've met through my work. Our families did everything together. And as an electrical contractor, I
    made friends with everyone I worked for or worked with.
    ....Next, are our neighbors. Over the years, Helen and I treasured our neighborhood friends and even now that I living here all
    alone, some of them keep bringing me food and want to take care of me.
    ....Next were the friends I made at the long term care home where I had to place Helen. They need me now and I trto visit
    them often.
    ....Then of course, I can't say enough about all of you wonderful friends on this site who have helped me so much when I
    really needed a friend who knew where I was coming from.
    ....Now....I need to give credit to the most friendly person that I've ever known..... ..My dear wife Helen. When we were
    visiting her home town.....No matter where we went, old high school friends, both guys and gals......Asians, Mexicans,
    Blacks. Whites, would all come up to greet her. She taught me her secret of making friends. No matter where she was or
    what the circumstances. she would always find something to say to a stranger, which would start a conversation.
    ....I could go on and on but I think I've said enough....I can understand being alone, but I can't understand lack of friends.
    Naturally, at my age, most all my old friends have died but I'm making new ones and having fun doing so.

    ...................GeorgieBoy
    • CommentAuthorWolf
    • CommentTimeApr 28th 2016
     
    George, what are we to make of this detailed walkthrough which sounds like you're very much alive and kicking, with what you wrote to Don just days's ago where you said "I realized that I had almost completely worn out this old body that I had lived in for 94 years. I cant see much....can hardly hear anything.....can barley walk....My little brain can't think or remember much"?

    It was common for people to open a topic asking a question for many years where they needed help with an answer. That's what user's should do now. If you have a specific issue or question or worry - you can search that word in the search feature at the top of the page or you can open a topic for it.

    I agree that Myrtle, you should talk about whatever you want to talk about. I would also say that caregivers shouldn't talk themselves out of reaching out to hear a voice that knows. That has happened many times and we have 'grabbing the rope' threads so people can hang on. Someone to talk to is just as much help needed as anything else.

    Let's see what Joan's planning to do. There are new people here and with the fixes now there are no barriers to new people coming in. The timing is such that after a vibrant run many of the caregivers lost their spouses including Joan who then understandably stopped writing Blogs for some time. That hacked message has been there for well over a year and might have blocked people seeking help from coming here. It might also be that this board has enjoyed a strong run of personalities where many names come to mind. When I first came here in 2010 there were often over a hundred posts in total per day.

    The monthly thread is meant to be the chat thread. There is nothing off topic on the monthly thread except the usual suspects (politics and religion for two). It's also fine to start a thread as 'off topic'. Nothing to do with dementia directly but something you want to discuss (ie: "off topic - why wasn't I born rich?").

    I can talk forever and am always willing, but my world is recovering from this and I can't help but be dominated by that perspective because I need to be. The main issue is to help people in this experience. I hope to encourage some people and help others and share some of my experiences because those are the things I got from this board and I am still recovering from Alzheimer's, and so I have my own needs with people that share these experiences.
  13.  
    Wolf......Thank you for the information. It's always good to hear from you.
    You know so much about this site and what is best for it.

    It's really good to hear that you're getting back to your painting. I think the
    only way to recover from this sad journey that we've been through is to keep
    ourselves busy and from what I've seen of your beautiful paintings on your
    "Wolf Von Munchcake" site you have so much to offer.
  14.  
    My DH had a dream last night. It was quite scary for him. In the dream, we and some friends went to a resort for a vacation. I and our friends went our separate ways, and DH found himself alone and he couldn't find us. Then people started steeling his things. He said that his car and other belongings were stolen. Finally, he was left with only his clothes, and then "his thoughts" were stolen. He was "just there and couldn't think about anything." He said that he knew he was a person but that he didn't know anything else. When he described this all to me, I could really feel his fear.

    For those of you who don't know me, my DH probably had FTD, is in his early 60s, and is undiagnosed. I started noticing strange things and symptoms about 17 years ago, following an illness that we thought was the flu. I can pinpoint the strange things beginning to happen following this illness. He is highly functional and knows that something is wrong. He is always quite scared that if he gets really bad that I will put him somewhere and won't come see him. He has all the signs of behavior variant FTD.

    Mary!!
    • CommentAuthorWolf
    • CommentTimeApr 29th 2016 edited
     
    I was thinking about the black hole also known as my life recently and it crossed my mind there are probably hermits that get out more than I do. I did have a nice conversation last week with a young man who phoned all the way from India to see if I wanted my ducks cleaned. I tried to explain I don't have any ducks so I wouldn't require that service and he argued with me that every house has ducks. "Maybe in India they do but not here." I answered and politely but firmly rang off. It wasn't the closest relationship in the world but it's a start.

    I'll give you a close relationship. Me and Wile E Coyote where the only difference between everything he touches crumbling to dust and everything I touch crumbling to dust, is that my life doesn't have ACME stamped all over it. Otherwise, we're identical twins.

    I didn't actually answer the door to the Jehovah's Witnesses bent over cackling "are they good to eat my precious?" but it crossed my mind as I opened the door and listened yet again to whether I'd ever considered the after life. I don't bother explaining it doesn't make sense to keep recruiting more when only 144,000 of you can get in. They have to do this to get in though. It might have gone better with a bit less sherry that nineteenth century afternoon.

    "Oh God, I'm in no hurry", the six foot seven, 250 lb motorcycle gang member answered waving me off. He hasn't seen his wheelbarrow all winter or spring where I'm supposed to be painting flames shooting out on both sides. It's in my house by the garage door and every time I pass, it reminds me I have no idea how to do this. Motorcycle man is next door talking to my next door neighbour - which makes sense - and is offering advice on the shed he's building on the side of his house facing me.

    The lady across the street phoned into the city complaining when she saw him start building it last fall. Sure enough, they sent an inspector around and he was told he had to take out the connecting bolts so it was free standing or get a building permit for an extension. My next door neighbour was furious.

    That's the same lady that complained that my next door neighbour's girlfriend seemed to be mental because she was always rummaging around on her hands and knees in the bushes of our center court. She's an artist and makes large pictures entirely out of tiny twigs and grasses and flowers. They're really quite good actually.

    I don't say anything at our little tea parties though. I made the mistake of telling them I can see down the valley from my window here and see the fire engines go by pretty much every day. Crab lady explained her husband would love to be in that room because he loves watching fire engines go by. I recoiled in horror and wanted to do Woody Allen explaining that "maybe hubby could get one to take him to a good doctor because they can help..."

    That lady who lives with my next door neighbour was originally with motorcycle man but met the neighbour at one of motorcycle man's parties and crossed the street to live with him instead. That's the party where the entire court was jammed with cars including the entire one acre park in the middle and while a live band played in his backyard, I watched a couple energetically full contact wrestle on our front lawn. It was like a couple of pages of Harlequin Romance Novel happening outside my front window. They were in a take off your underwear kind of love. I couldn't tell who won but I wished them well.

    Where was I? Oh yes, the black hole of my so called life. I should get out more. Or once even. It all reminds me of that scene in Love and Death where Woody (before he lost his mind) asks Diane Keaton just how many guys she's slept with.

    "Well, there was Abel and Adam and Andrew and Axel and..."
    "My God, that's a lot!" Woody protests
    "Wait, I'm still in the A's", she says remembering

    That's not particularly helpful or germaine but neither is life. We're put here for a reason everyone says and then they see they mean different reasons and they start bopping each other and it's the next millennium. Something like that. I skimmed through it.

    "I will forsake my king and all my oaths for your love. Take off your underwear." said Sir Galahad to Lady Guinevere. Or something pithy like that. I like history. Same old same old while the hairstyles and the clothes change around.

    Where was I? Oh yah, my so called life. I should get out more.
    • CommentAuthormyrtle*
    • CommentTimeApr 30th 2016
     
    There is a long article ("Fraying at the Edges") in the New York Times today about Alzheimer's from the perspective of a woman who has it. There is also a short piece ("What is Alzheimer's Disease?") that accompanies it, which is a straightforward explanation that might be helpful to people who don't know much about it.

    (BTW, If you do not subscribe to the Times, you are allowed to read a certain number of articles per month for free. Since today is the end of the month, I think the number will reset itself tomorrow.)
  15.  
    Wolf, it's not just the quantity of "getting out more." It's the quality,too. I wouldn't just try to go out for the sake of going out...getting out of the house. There are only 24 hours in the day--spend them by living well--and if that means staying home and maybe working on your art (or whatever), that's fine. You are not on any agenda but your own.
    '