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  1.  
    Happy New Year everyone! It's a brand New Year and I wish all of us the best.
  2.  
    Yes, a happy morning for me. I went back to my old church for the first time in four years. I really was afraid I would get too emotional and have to leave or something...but I walked in the door and saw all the old familiar Christmas decorations, many of the same familiar people sitting in their usual places, that big Celtic cross behind the altar where DH and I were married...and I just couldn't stop smiling. What a sense of joyful homecoming.
  3.  
    How fabulous Elizabeth!

    Thank you MaryinPA. Back at you. A brand new year indeed.

    Happy New Year everyone.
    • CommentAuthormyrtle*
    • CommentTimeJan 1st 2017
     
    This year is going to be a tough one for me. I'm so glad I have all of you alongside me because I don't think I would be able to get through it without you.

    Elizabeth, I'm so glad for you.
    •  
      CommentAuthorCharlotte
    • CommentTimeJan 1st 2017
     
    I am so happy for you Elizabeth. May God continue to bless you with good memories that make you smile and less that make you cry.

    I am with you myrtle - this year will continue to go downhill. The last two days he has been up and down looking in the cupboards but can't tell me what he is looking for. Today he came out with his knit hat saying 'I found it so if I go out for a walk I can keep my head warm.'

    Today is football - Patriots, then hockey winter classic until the Seahawks come on.

    I have 4 or 5 PT sessions left. I can almost get my arm straight up but with pain. Yesterday I tried putting it behind my back but really can't without a lot of pain. Physical therapist says it is the nerve impinging. I hope Medicaid will approve more PT cause I don't want to have to work through it on my own. I see my surgeon on the 18th - I think he has to request more. Positive - I can do things I couldn't pre-surgery which is nice.
  4.  
    Charlotte and Myrtle, just take it one day at a time--it's all you can do. We say it all the time, but it is so true. And "the gang" is here for you. (Not sure about Wolf--he was over at the Lodge putting his head in the ice chest or some such thing. No martinis for him next year.)
    • CommentAuthorMim
    • CommentTimeJan 1st 2017
     
    So happy for you Elizabeth....you CAN go home again!
    Went by your "old" place today.
  5.  
    Thanks Mim, but I'm keeping both places, at least for two or three years to see how it all shakes out. So you can't get rid of me that easily!
    •  
      CommentAuthorCharlotte
    • CommentTimeJan 3rd 2017
     
    We have owned our 2001 Prius since 2002. Not once has it been driven in the snow until today. I was not going to miss PT again due to snow or icy roads. Once I got out of the park and off the side road, the road was OK. I just pulled out onto the highway when I noticed I forgot my purse - oops! Had to continue a little distance to a place I could pull off and turn around. Of course that road was not plowed - had packed and loose snow on it spinning a little. Finally made it to PT even up the hill with no problem. Went to store but once I went over the city lines from West Richland to Richland the roads were not as good. Couldn't believe they were not out plowing the roads. We had 3-5 inches on Saturday. The storm before Christmas where we had an inch they were out in full force de-icing before and plowing. Thankfully made it home fine.

    Woke up New Years morning to snow - went out and shoveled clearing grass off for dog. Continued to snow and blow all day. Went out in evening to clear grass for dog. Sunday shoveled off grass - again - driveway and patio. Glad we did. The snow was light and fluffy. Today the lady across from us was trying to shovel but by then it had melted a little and stuck. Much easier to shovel as it snows or right after it stops. Makes it much easier when the neighbor lets us borrow their snow shovel. I was cleaning off the area where they park and by their stairs when they arrived home from the weekend away. They have a white siberian husky with beautiful blue eyes that loves the snow. He loves to 'catch' snowballs and have snow thrown at him. He is so funny - before they moved next to us he was so so with us. After they moved next door and I gave him a bone we have been good friends. We were afraid there might be a problem if hb cause he likes to go up to the guy and slap him which Dakota would take as aggressive. In fact, he keeps an eye on us when we come and go and there has been no problem with hb. The only problem was one day last fall they were sitting outside, I was taking Jasmine for a walk when the guy called her over. Dakota went after her but thankfully only scared her. He's been fine since - would love to play with her but she will have nothing to do with it. (she actually won't play with any dog).

    The next 3-4 nights will be single digits at night and teens during the day. Then they are saying a heat wave is coming for the weekend - highs in the upper 30s!!!
    •  
      CommentAuthormary75*
    • CommentTimeJan 4th 2017
     
    From another site:
    MAYO CLINIC - DRINKING WATER

    A cardiologist determined that heart attacks can be triggered by dehydration.
    Good Thing To Know. From The Mayo Clinic. How many folks do you know who say they don't want to drink anything before going to bed because they'll have to get up during the night?
    Heart Attack and Water - Drinking one glass of water before going to bed avoids stroke or heart attack. Interesting.......
    Something else I didn't know ... I asked my Doctor why people need to urinate so much at night time.
    Answer from my Cardiac Doctor: Gravity holds water in the lower part of your body when you are upright (legs swell). When you lie down and the lower body (legs and etc.) seeks level with the kidneys, it is then that the kidneys remove the water because it is easier. I knew you need your minimum water to help flush the toxins out of your body, but this was news to me.
    Correct time to drink water... Very Important. From A Cardiac Specialist!
    Drinking water at a certain time maximizes its effectiveness on the body:
    2 glasses of water after waking up - helps activate internal organs
    1 glass of water 30 minutes before a meal - helps digestion
    1 glass of water before taking a bath - helps lower blood pressure
    1 glass of water before going to bed - avoids stroke or heart attack
    I can also add to this... My Physician told me that water at bed time will also help prevent night time leg cramps. Your leg muscles are seeking hydration when they cramp and wake you up with a Charlie Horse.

    Aspirin..PLEASE READ
    Mayo Clinic on Aspirin -Dr. Virend Somers is a Cardiologist from the Mayo Clinic who is the lead author of the report in the July 29, 2008 issue of the Journal of the American College of Cardiology.
    Most heart attacks occur in the day, generally between 6 A.M. and noon. Having one during the night, When the heart should be most at rest, means that something unusual happened. Somers and his colleagues have been working for a decade to show that sleep apnea is to blame.
    1. If you take an aspirin or a baby aspirin once a day, take it at night.
    The Reason: Aspirin has a 24-hour "half-life"; therefore, if most heart attacks happen in the wee hours of the morning, the Aspirin would be strongest in your system.
    2. Aspirin lasts a really long time in your medicine chest; for years. (when it gets old, it smells like vinegar).
    Please read on.
    Something that we can do to help ourselves - nice to know. Bayer is making crystal aspirin to dissolve instantly on the tongue. They work much faster than the tablets.
    Why keep Aspirin by your bedside?

    It's about Heart Attacks -There are other symptoms of a heart attack, besides the pain on the left arm. One must also be aware of an intense pain on the chin, as well as nausea and lots of sweating; however, these symptoms may also occur less frequently.

    Note: There may be NO pain in the chest during a heart attack.
    The majority of people (about 60%) who had a heart attack during their sleep did not wake up. However, if it occurs, the chest pain may wake you up from your deep sleep. If that happens, immediately dissolve two aspirins in your mouth and swallow them with a bit of water.
    Afterwards: - Call 911. - Phone a neighbor or a family member who lives very close by. Say "heart attack!" - Say that you have taken 2 Aspirins. - Take a seat on a chair or sofa near the front door, and wait for their arrival and ........DO NOT LIE DOWN!

    A Cardiologist has stated that if each person after receiving this e-mail, sends it to 10 people, probably one life could be saved! I have already shared this information. What about you? Do forward this message. It may save lives!

    "Life is a one time gift" (Let's forward and hope this will help save some!!!)
    ***************
  6.  
    Good to know, Mary. It crossed my mind that older men may need to get up often at night due to enlarged prostate.

    Charlotte, I've been thinking about you driving in the snow to get to your appointment. Maybe you could just re-schedule if the roads are bad? I don't know how a Prius would be in the snow, but I'm guessing they must be good, assuming you've got good tires. My brother and sister-in-law in western New York go to Vermont all the time in all weathers in their Prius.
    • CommentAuthormyrtle*
    • CommentTimeJan 4th 2017
     
    Charlotte, Your community sounds nice. In this next of the woods, the quality of the plowing also changes when you cross into a different municipality. I have friends in Maine who have a Prius about the same age as yours and they seem to do fine with it. keep warm.

    Mary. I have made a note of these things about water and aspirin. Thanks.
    •  
      CommentAuthorCharlotte
    • CommentTimeJan 5th 2017
     
    My mother-in-law thought she had the flu the days before her fatal heart attack. She no other pain according to my brother-in-law. Water - yes I am up about every 2 hours so I guess I retain a lot during the day even though I go a lot during the day.
    • CommentAuthorFiona68
    • CommentTimeJan 6th 2017
     
    Mary 75, thank you for such interesting information. I'm going to print it out so I don't forget what & when to take things.

    Here's hoping that everyone has a good 2017.
    • CommentAuthorLindylou
    • CommentTimeJan 8th 2017
     
    Woke up at 4 AM and washed my hair so it would be dry before 6 AM. At 6 I got dressed silently, put on my coat, found my gloves and hat, grabbed the shovel and............. some good neighbor had shoveled everything,wide and clean, including the ramp. And I never heard them. What a blessing are good neighbors. Now I have to find out which good neighbor it was. Home baked cookies for the thoughtful person! Though I know they did not do it for a reward.
  7.  
    Wow, Lindylou. What a great surprise. My suggestion would be to continue to have a break, and just give them a nice box of tea or something. Don't bake.
    • CommentAuthorFiona68
    • CommentTimeJan 9th 2017
     
    Lindylou, that gave me a smile. They talk about 'angels among us' and I have come to believe it in these Alzheimers/caregiving years. I'm glad you have someone watching out for you two. :)
    • CommentAuthormyrtle*
    • CommentTimeJan 9th 2017 edited
     
    In November I wrote about my husband's children saying they wanted to come out to visit him in the Spring. His daughter called the other day to say that she and her sister want to come in May. I told her that he may not be alive in May. They live in the Southwest and do not want to come out now because it is so cold here in New England. They asked for specific information about his condition so they could assess whether they could wait until March, when the weather is warmer here. I was doing OK until this issue came up; however, these conversations have send my stress levels sky-high. I don't want anyone coming here. My husband and I are fine and he is being well taken care of and we don't need anyone else.
    • CommentAuthorcassie*
    • CommentTimeJan 9th 2017
     
    I do understand your angst, Myrtle but please try not to stress yourself. And if they do decide to visit could you have plumbing issues and be unable to accommodate them?? Don't put yourself out for people like that, too little too late where they are concerned (in my unasked for opinion!)
    •  
      CommentAuthorCharlotte
    • CommentTimeJan 10th 2017
     
    This afternoon was a fun time. Six of us on our side of the road and three across from us were all outside shoveling snow. They were plowing the road after the 5 inches a couple days ago leaving 'banks' across our driveway. Easier to shovel before it freezes. Today they had 2 big tractors and a pickup with a blade. We cheered them on as they went by. The guy with the pickup was nice and plowed out the areas where our driveways are. We are the only area in the whole park plowed like that - were the only ones out shoveling. Needless to say our car dolly is buried in snow - can barely see it. Don't think we will be using it anytime soon!

    Got the black water drained. The sun finally came out and I knew it would take long to warm up the compartment enough to unfreeze the slider. Had to get it done today since it had been a week and with the temps forecast to be -4 Wednesday and Thursday night needed to empty now. My hot water tank is still dripping but hopefully it will do just that until I get a new plug in case the leaking one is cracked.

    Didn't make it to PT today - roads were fine due to the sun once you get out of the park, but I would never have made it through the snow to get out. Hopefully can make it on Thursday.
  8.  
    Myrtle, his children sound like a couple of loo loo's. I would not stress out over them, and I would just let them do whatever they're going to do. But you do what you're going to do...which is do not let them stay at your house, and do not go out to dinner with them or things like that that you don't want to do. You can use that convenient phrase that someone mentioned a while back: "I'm just not up to it."

    If they are so worried about the weather, why didn't they come earlier, before we got into the snow season. Good grief. (If I remember right, they don't come at all. Lovely.)

    Charlotte, keep on truckin' ! Life with Alzheimers is bad enough, but life in a motor home in bad winter weather with Alzheimers is unbelievable. I hope you can get to PT on Thursday.

    I was going to go to lunch with four of the old friends today, but we have a storm coming in, so they re-scheduled for Thursday.
    • CommentAuthorLindylou
    • CommentTimeJan 10th 2017
     
    Myrtle, your husband’s kids are doing what they are doing for themselves. Preventing feelings of guilt? (good luck.) I’m with the others. Go the least out of your way that you can. I like that phrase too, “I’m just not up to it.” I’m sure it won’t occur to them to say thank you for the love and care you’ve given over these years. So don’t thank them for coming up finally when for all intents and purposes it is too late.

    I’ve been grieving with you. I know how hard it must be for you right now. Suggestion, hand them over to hospice. Part of their job is dealing with family. You don’t have to deal with them at all.
    •  
      CommentAuthorCharlotte
    • CommentTimeJan 10th 2017
     
    Seems like yesterday with the neighbors was so long ago. Had another 2 inches of snow this morning. Suppose to be the end of it before the bitter cold hits. Now they have put out a warning of another 2-4 inches tonight with 15-20+ winds before the bitter cold (below zero) - already had one gust at 32 mph. When I read the new snow prediction depression hit me. I shoveled late morning then again later when the snow stopped. He stayed in bed until 1pm. He came outside when I was shoveling but just messed around with the broom. Then I put de-icer down on the steps and what's he do - you got it, swept it off! Just went out to sweep the blowing snow off and couldn't find the broom. Again, he put it under the MH. I have asked, cried, begged and yelled to leave it by the door and not under the MH so far under I can't reach it. Of course, it falls on deaf ears/memory. I came in yelling at him and crying. Of course it had no effect on him. I also need to be thankful we didn't get the freezing rain they forecast a couple nights ago - prefer the snow.

    I am getting fed up with Jasmine. She has taken to peeing and pooping on the rug. I could deal with the poop but now 2 of the last 3 nights she has peed. This despite going out and peeing every couple hours. I could see if she doesn't go out but she does. Tonight her food and water are getting taken away at 6. During the day she will go for hours not going but I guess like me at night she has to more often. It is cute when she does do it - when I get up she does too and starts wagging her tale running out to the carpet where she has left her 'present'. Once I see it, she runs back into bed. I guess I should be grateful she warns me so I don't step in it.

    More snow also means he will not be going to day care again. It means being shut up in the house. One reason I go out to shovel or sweep is to get out of the house. It means no driving so there goes going anywhere. When will winter ever end? Normal for this area, which is why we settled here, is sunshine even though it is cold. I think we had one day of sunshine in the last week.The next few days might have sunshine. Then we hit a heatwave next week on Wednesday suppose to hit 49 (of course that can change by then.)
    • CommentAuthormyrtle*
    • CommentTimeJan 10th 2017 edited
     
    Thanks for your advice. It's exactly the same as what I got from people here. After thinking about this for quite awhile and examining my motives as honestly as I could, I have to say that there are two elements to this - one is my desire to avoid more stress and the other is the ambivalence I have about the visit. I think my first concern is legitimate. I really am pretty useless these days. The house is cluttered with paper, the beds in the spare rooms are piled with off-season clothes and bedding, and my work is way below par. I am unkempt and so is my cat. I am just not ready for guests. But the second concern - my feelings about their attention to their father - is not so defensible. We are talking about a last visit before death - a serious thing. They are both good people. Who am I to hinder that or to minimize their feelings? My own family experience -- growing up in a stable 2-parent family that supported each other through thick and thin -- gave me a narrow view of how families should behave and no insight at all into what it might be like to have estranged parents, with one of them living on the other side of the country. If they should have called more or visited more, so be it, but it is not my place to punish them for that by making it hard to visit. Also, I have stayed at both their homes when we went out there for weddings and graduations, so how can I refuse them hospitality? That does not mean I have to be a tour guide or activities director, though, and I will just have to swallow my embarrassment about the sorry state of the house, the cat and myself.

    An update on my husband. He seems to have stabilized. He has been cleared to continue thin liquids and has started eating more of the pureed food. He has resumed walking short distances with the help of two aides. I feel we have been given a short reprieve. Because of this they might delay the visit until March, when the weather is better.
    • CommentAuthorcassie*
    • CommentTimeJan 10th 2017
     
    Myrtle, perhaps you just needed to voice your feelings to help you sort it out. You are showing a lot of empathy there, for someone in a "sorry state" so well done you. What is up with Lucy?
    A better report on your husbands' state of health today, that must give you a small amount of relief. All the best.
    • CommentAuthorWolf
    • CommentTimeJan 10th 2017
     
    Good for you Myrtle. Stress is a state which is heightened by events. That's true here because the stress comes from everything that's happening and trying to cope with all that. Situations like this bring the stress to a peak but they're not the cause, and we're better off trying to manage the situations knowing we have stress rather than seeing the situations as the stress.

    I'm going to reach here. I wonder if it's possible that the aspect of stress that is most worrisome to you is the panic aspect of what stress does to our normal reactions to things. I had a great deal of anxiety. How anxiety differs from stress might be a mugs game. The point is I had to learn that sometimes events would overtake me but that when I looked at all the events, I always caught back up again with that event. I had to learn to ride the period out when I was being chased by it until that specific issue ran it's anxiety course. Usually a day or two, sometimes longer.

    The best thing, I believe, you can learn/teach yourself is anything that helps with the whole idea of stress. For example what happened inside you over 24 hrs to come from feeling chased by it to having a rational outlook about it? That's what I just watched. How did you turn that? How can you help yourself ride through the next one with more ability to recognize (is that what it is?) that after the stress waves, Myrtle resolves that thing.

    Win the battle of worrying about the state of your house between now and then. Tell that idea to flock off. Tell it you're doing several important things and making the cover of Homemaker's Magazine isn't one of them. Letting them see him and helping yourself cope are the important things. Not my frigging house. It's my frigging house and if it reflects the costs of this disease, that is the truth, so bite me and save the thousand words.

    You are a highly rational and perhaps organized isn't quite the right word - kind of person. It's almost certain that stress taking you off that is harder for you than most in that regard. That might not be right but it's worth thinking about. When chaos reigns you ride it out until it ebbs. Entering chaos knowing it ebbs when you wait it out helped me. Check the data. You're good at that. It always ebbs. Teach yourself that any panic you feel that you're spinning out of control is actually the truth of the amount of stress in your life and that always ebbs so ride it out knowingly. My advice in doing that is safe boring distraction. I would bet you would be good at anything that includes organization in execution. Cross stitching comes to mind. I played free cell. I played thousands of games of free cell in my own tangos with the beasts over the years.

    Kudos for coming around so quickly to deciding what's right to do. Tell those people to expect the college dorm from Animal House and then challenge yourself neither to clean more than a certain amount nor to worry about it - EVER!!!! Make a list of what you'll clean, stick it on the fridge, include a note at the bottom that says "this is what I'm doing three days before they come and other than that - bite me". Every time you get the milk - there it is.

    I hope this goes OK for you.
  9.  
    Wow, a lot going on this morning.

    Charlotte, Bandit is thoroughly house trained, but when the temperatures were really frigid with lots of snow, I found some "accidents" in the house a couple of times. He was just trying to avoid going out in that weather. I'm sure it's the same for Jasmine. Like you, I do not let him have anything to eat after 6 pm, and if he were continuing to have accidents, I would take up the water bowl after 8 pm. He sleeps in his carrier with the door shut (he honestly prefers that--it's like his little house, I guess), and will whine and scratch if he wants to get up during the night--fortunately that has only been four times in this past year. The last time was when it was seven above zero outside, at 3 am. Oh well, the stars were pretty. I hear you loud and clear about dogs during cold, snowy, bad weather. I have to take him out five times from around 8:30 am until the last potty walk at 11 pm or so...and I get so cold, and am afraid of falling if it is icy. Currently I'm taking a bunch of ibuprofen because my right shoulder is killing me from him pulling on the leash. He walks fine on a loose leash in Ohio, but here in NY, where everything is new, with super-interesting smells, he just pulls and pulls until I'm ready to scream. I am hooking up with a trainer, so I'll keep everybody updated on how that goes--not that I can't teach him myself--but I think it will be interesting for him to go to "school" and meet some new people and dogs.

    Myrtle, I think one of the side effects of being an Alzheimer spouse is that all our housekeeping and organizational skills just go South. I don't know why it is. And self-care tends to get iffy, too. Just pare things down to a simplicity that you can deal with, and chalk the rest of it up to the White Cliffs of Dover. My bedroom in the Heartland still has boxes of "stuff" and books from two to four years ago, and there it sits, although the rest of the house is sorted out and in fairly good shape. In terms of myself, I've never gotten back to my light weights and floor exercises that used to be a must and a set routine that kept me in shape. I've purchased and then discarded nail polish twice over the four years since we left NY the first time--I've only just started really taking care of my hands with lotion and cuticle cream...just can't seem to get into my old routines, or be as primped and polished as I used to be. I try to be strict with myself about being generally neat and clean, because even now it is so easy just not to bother. I don't know why that is. I've worked out a simple way of dressing--just simple, dark tops and jeans, and try to do minimal make-up and earrings every day. I just started giving myself one little spritz of perfume in the mornings. (Don't like fragrances much, but "Addict" by Dior is the good stuff.) I agree with Wolf that you should just tell the visitors that the house has suffered during the caregiving years--if you even want to mention it at all--and then go about your business. In terms of Lucy, did you mean that she needs grooming? With Bandit, I just have a personal rule that I must comb him once every 24 hours. It isn't always first thing in the morning, and he is a pain in the neck to groom, because all he wants to do is wiggle and play. But he looks so much better, especially with his ears combed...and it kind of fluffs out the rest of him. I do find that the more you do it, the easier it is to get through their fur.
  10.  
    Forgot to say that Bandit gets combed, not brushed, because the comb goes right down to his skin and prevents mats from forming. I do brush him some, but the comb is a necessity for his kind of fur--soft and longish, mats easily.

    In terms of housekeeping, my grandmother, who liked to keep house, always said that as long as your dishes were done and the bed(s) were made, you could get away with a lot. No matter how looney tunes I am with the blahs, or just having trouble getting my act together and getting anything done, I make sure the bed is made first thing, and that I keep the dishes caught up. It gives the impression that the home is neater and cleaner than it really is.
    • CommentAuthorFiona68
    • CommentTimeJan 11th 2017
     
    I agree with you Elizabeth about the bed (though not the dishes :)). If my bed is not made, I feel all messy myself and when I make it, everything (my head included) feels a little more organized.

    As far as the dishes are concerned, I just pile things in the dishwasher and …. have even piled them into the oven at the last minute, when company arrived. That's been a bit tricky, as I forget they are in there & have turned on the oven twice with things in there. I swear, if I burn down my own house over my own carelessness and have no one to blame but myself, I'm going to be very tic'd off!!
    • CommentAuthorFiona68
    • CommentTimeJan 11th 2017
     
    Elizabeth, regarding your dog pulling so much on your walks, here is something that has helped me with my LARGE golden doodle. I place the leash (which is attached to his collar) under his chest and up in back of one of his front legs. He pulls much less. (did that description make sense?)
    • CommentAuthormyrtle*
    • CommentTimeJan 11th 2017 edited
     
    cassie, What is up with Lucy is that she still does not groom herself well (except for her bottom, thank goodness!) and will not let me brush her at all. Now that it's cold, she has grown a thick, shaggy coat. She looks like a miniature orange buffalo.

    Elizabeth, I always combed or brushed my previous cats and I would love to comb this one but she will have none of it. So I have to take her to the groomer every two months for a comb-out, belly shave, and mani-pedi. I think she may have been mistreated in the past. She is a true scaredy-cat and it took her over a year to get the nerve to sit on my lap, which she does all the time now. So I have to take her to the groomer every two months for a comb-out, belly shave, and mani-pedi. When I put her in the car, she is so scared that she pees her pants. Otherwise she is a good cat.

    Fiona, What a riot about the dishes!

    Wolf, you're right that this is not just stress; it's panic.

    As far as the proposed visit, it's not really empathy on my part. It is what the best thing to do is in these circumstances. Now that I've calmed down and thought more (see below) I've decided that I will have them here if I'm up to it, but will warn them that given my mental and emotional state, I can't be a proper hostess and they'll have to fend for themselves for driving and meals. If I'm not up to it, I'll simply say so but I won't make fault or blame part of the deal.

    When I thought about it more I realized that these visitors are not the entire cause of my angst. I am also upset by 2 friends. For many years, including the years I took care of my husband at home, I was one of a group of 4 women who would go out for dinner together every couple of months. But in the last 10 months, 2 of the group seem to have sought out more exciting company and have been unavailable for our outings. So my other friend and I feel that we have been dumped (which we have). So there's no sense in blaming one group or another for my bad feelings, especially when the real culprit is not a person but a disease.

    I will say that, in addition to clarifying my feelings, what I have learned from talking about this is how supportive many people -- both in my everyday life and in this forum -- are of me and that I really appreciate that.
    • CommentAuthorLindylou
    • CommentTimeJan 12th 2017
     
    Brought my frail partner to NH today for her/my third respite. I will be spending a week with my son and DIL in Florida. Her family is coming through and between them will be visiting her everyday.I truly need this time to get out of quagmire for a while and into relaxation. Hope when I come home I will be able to put on the harness and continue the day to day skills of our survival as we travel through this end stage of a disease called dementia.

    Yesterday her son brought the two granddaughters here for a mini Christmas. When the oldest hugged her Nana goodbye, my partner burst into tears. I asked the little one if she knew why Nana was crying. She shook her head no. I said she is crying because she is so happy to see you this afternoon. And her daddy said, her Nana has always cried when she was happy. I didn't want the tears to be scary.
    • CommentAuthorWolf
    • CommentTimeJan 12th 2017
     
    I hope that your visit gives you a break. It hurts sometimes to be around the normal realities we also might have had if not for this truly awful disease. It can also do the soul good to be around that reality. I'm betting on both.

    There was a time when I became determined to keep the beat alive, where all things have points of view to see them by, and mine was that the main point, the important point, the thing that matters - is that half of us is still here. "How do YOU think I'm doing?" I asked her picture on the bureau and she didn't answer of course but I can't see how that matters. It's not what I couldn't save; it's what I could. Safe trip with all quiet on the home front.
    • CommentAuthorcassie*
    • CommentTimeJan 12th 2017
     
    Hope that it all goes well for you both, Lindylou.
    Wolf,any thing good in me has been destroyed by the illness, that I had to watch as it killed off my lovely husband.
    I could have accepted the ALS but when dementia came into the picture, ah that was cruelty on steroids. I don't think that I am even half of what we were (perhaps one tenth, didn't manage to come out with a great deal of anything!)
    What I miss so very much is that no one has my back any more.
    • CommentAuthormyrtle*
    • CommentTimeJan 12th 2017
     
    Cassie, How can you say that anything good in you was destroyed? Your goodness and empathy comes through in evedy post. Your contributions on this site have helped me a lot - I am aways happy to see a post from you on whatever subject. I understand that you can feel defeated by these horrible diseases but you should never doubt your own goodnees and worth.
    • CommentAuthorcassie*
    • CommentTimeJan 12th 2017
     
    You are always so kind Myrtle, thank you.
  11.  
    Yes, I can only echo what Myrtle said, Cassie. Your shining light comes through in every post.
    • CommentAuthormyrtle*
    • CommentTimeJan 13th 2017 edited
     
    Well, here's some good news on the feline front. Last night, I admitted to myself that Lucy's unkempt state is largely due to a failure of nerve on my part. So when I sat down to watch TV, I spread a bath towel over my lap. Sure enough, she climbed onto the towel, which I then wrapped around her and despite her attempts to escape, I was able to hold her in place while I cut three large mats off her neck. Naturally, she ran off when I loosened the towel but 10 minutes later she was back on my lap, so the trauma could not have been too severe. (Cats are such drama queens!) If I can get her to fall for the towel trick again, I'll try some gentle combing of her neck, which I'll follow up with a treat.
    • CommentAuthorFiona68
    • CommentTimeJan 13th 2017
     
    myrtle, great solution for your cat. I have a golden doodle who has very fine hair too. He's pretty large, but does love attention - especially at night while I'm trying to watch TV & drink wine, so my new plan is that when he get's persistent, I'll take a comb & brush him out. Hopefully that won't be after 2 glasses of wine. I'm a little less coordinated on those nights that require 2 glasses! :)
    • CommentAuthorMim
    • CommentTimeJan 16th 2017 edited
     
    Reading through these comments brought me chuckles (the animals!) & comfort (our "troubles"). I don't have a dog anymore, haven't for a long time. The cost is just beyond what I can handle comfortably, & then when I think of having to constantly keep after dog hair, "spit up", outside in bad weather, or the middle of the night, don't think I could do it now. Maybe there's such a thing as a rent-a-dog, so I could get some cuddles!
    I know this damnable disease takes it's toll on us, the caregivers, but considering it all, I think most of us have done (are doing) remarkably well. Lindylou, I hope your time away gives you some refreshment & renewal. Myrtle, when making decisions about anything I think we end up knowing in our heart that our decision is the right thing to do (whichever way we decide). Cassie, anything good in you has not been destroyed, it's being buried. It's still there, waiting to come to light again. Myrtle, I forgot to say that the lack of concern about our homes & ourselves really struck a nerve! I think that's partly why I like to stay home - I just don't want to take the time to fix myself up. The house is passable, as long as I keep things picked up. As for nitty-gritty cleaning...NOT! Between my own health/fatigue & concern over Dan's obvious decline, the cleaning comes in last place. As has been said, bed made, kitchen sink & counter cleared up (which I'm not good with) & I'll add one more thing - bathroom sink & toilet. My aunt told me years & years ago that you can tell what kind of housekeeper a woman is by the condition of her bathroom! I've never been able to forget those words :) Thanks a lot, Aunt Florence!
    • CommentAuthorMim
    • CommentTimeJan 16th 2017
     
    By the way, first the good news - I am still cancer free! Hair is coming back, very slowly. However the facial hair has been happy to come back quickly...sheesh! (Sometimes a problem with we "older" gals)
    Second - not sure if it's bad news or not. Too soon to say, but Dan will be having out-patient surgery on the 24th because of his urinary troubles. I guess it's more of a more conclusive, more invasive cystoscopy, under sedation. The after effects are what scare me the most, how much more decline there will be. He declined after his last cysto. & subsequent hospital stay because of sepsis. He's just now showing a little sign of normal, whatever that is for him. He's still in a wheelchair because he can't walk but a few steps without assistance. Hence, the anxiety looms over me still. I will stay with him overnight that night, which I'm also not looking forward to. Completely out of my comfort zone.
    • CommentAuthorcassie*
    • CommentTimeJan 16th 2017
     
    So happy to hear that you remain cancer free, Mim. Wonderful news!! Not so good about Dan and the surgery though as it will probably affect him badly but here's hoping that he comes back to "normal" really quickly.
    •  
      CommentAuthorCharlotte
    • CommentTimeJan 16th 2017
     
    A few years ago someone posted the different anesthesia listing the worst, bad and safer ones (of course I can't find it now). I have used that when I have surgery to have some control over what they use which has not made the anesthesiologist too happy. Some like Versed are designed to cause memory loss. It is the one of choice for colonoscopies.

    Yes my husband was my Mr Fix-it. Now he just looks puzzled. As you all know, living in an RV there are your inside jobs and his outside jobs. Now I have had to learn both. Today the manager was reading the meter, knocked on my door and asked if I knew water was pouring out of the water bay. A couple years ago I removed the water pump that no longer worked and capped off the ends of the hoses until I can replace it. Today one of those caps cracked. Of course it was the one that had the water pressure on it. Thankfully I could take the cap off the hose going to the fresh water tank using it to replace the cracked cap. I was so afraid it was a major break - praise the Lord it was not. Between the cold water and being 15 degrees out my hands were mighty cold. I will say I had help. I couldn't get the cap loose so the manager did, took the good cap off the other hose and replaced it on the water hose. Now it is all ice in the bay. So hoping we will see some sunshine tomorrow to dry it out some - not in the forecast but miracles can happen! Art got home from day care as we were finishing.

    I had hoped to fix the hot water tank leak tomorrow but they have delayed the warm=up until Wednesday or Thursday. The plug is leaking. I am hoping it is not cracked but I bought a spare today just in case.
  12.  
    Charlotte, I can't even imagine. I don't know how you do it without just curling up and keeling over. Art, the dog, the motorhome, your own health issues...you are one strong lady, that's for sure.

    Mim, I kind of forgot about the bathroom. I don't really formally "clean" it, like every Saturday morning or anything like that. It's a continuous process, so it always looks neat and clean. (Not glamorous--just neat and clean--a rather minimalist look in both NY and OH.) In the days of Alzheimer's caregiving, especially when combined with three little grandchildren "going potty", I would literally have to go in and clean up after almost every time DH or the kids used it. I won't get too detailed here--ya don't wanta know! But I was keeping the Clorox wipes people in business!

    I've been thinking about what you (Mim) said about not getting a dog. I think that's really wise, and as much as they are good friends and companions, there is no question that they are an added expense, a big responsibility, and a lot of work and take a lot of time--easily two hours a day of long outside walks, in Bandit's case. Plus play time, feeding, training, and the time spent in regular, shorter potty walks.. Plus they really tie you down. It's like having a small child to take care of--you can't just leave them without arranging for "babysitting." And while they are good for your health in that they have to go out for walks--they have to go out in all weathers. I don't mind anything except ice. Ice is my enemy--the thought of a fall and possibly a broken bone is terrifying. But getting a dog outside five times a day or more--from let's say 8am to 11pm--is not for the fainthearted in frigid weather. And yes, sometimes they want to go out in the middle of the night--that has happened to me four times over the past year, and Bandit's requests were quite bona fide--he really had to "go". I literally could not imagine having a dog and a time-consuming Alzheimers patient to take care of at the same time--although I know people do, of course. And a puppy! Forget about it! I literally lived in my kitchen behind gates with Bandit for the first six weeks or so (from when he was 14 weeks old until around 20 weeks) working on his potty training--literally took him outside almost hourly to try to "catch" him and give him the idea of what we were trying to accomplish. It was probably very good for me--had to be up and dressed, out in the fresh air a lot--no more slouching sullenly behind the computer for hours, with uncombed hair and wearing grubs--but boy, what a lot of work.
    • CommentAuthormyrtle*
    • CommentTimeJan 17th 2017
     
    There has been a big outbreak of flu here, including in the facility where my husband is. Today my doctor confirmed what I had heard elsewhere, that a lot of people who got the flu shot are still getting the flu. So maybe this year's update of the vaccine did not accurately predict which strains of flu would be dominant.
    •  
      CommentAuthorCharlotte
    • CommentTimeJan 17th 2017
     
    I agree - I know ones who got the shot and have had the flu. In fact, they were more sick than I was.
    •  
      CommentAuthorCharlotte
    • CommentTimeJan 18th 2017
     
    Missions accomplished: water heater fixed (plugged had broken so good thing I had bought more), black water drained , I wrapped some of that tape that is suppose to work on anything hot or cold under pressure (not duck tape) around the end of the hose that leaked the other day cause it was still dripping and I couldn't get it stopped; we had freezing rain so we got the porch and walkway plus a little grass for the dog cleared of 1/4" ice and the car cleaned of ice. Now I am ready to stay in the warm inside. I did have to cancel my post-op checkup cause of the ice. :-( Now I have to wait 2 more weeks. I have 2 more PT left and hoping the doctor will order more and insurance will approve. I have got hb to help with the ice clearing. Now he is outside chatting with one of the neighbors - I can hear him.

    29 degrees - the sun was out but is now hiding behind clouds. Overall a beautiful day.
    • CommentAuthorSass
    • CommentTimeJan 18th 2017
     
    mary75* - I feel like this disease is going to take me down with it. I haven't been exercising, I've been stressed to the hilt and just trying to do the best I can. I've been away from the site for a while and was reading up on some of these threads, saw your message about drinking water and I thought, eureka!!! I CAN DO THAT!! Something in my control. I drank my glass of water last night before bed. Drank 2 glasses this morning when I got up and 2 large glasses this afternoon. I didn't know any of that about hydration and heart attacks and stroke.

    Charlotte - I applaud you and your progress with the "outside" jobs! I struggle with that all the time. I have muddled through a few things on my own but definitely not my forte and a continuing source of stress when things break.
    •  
      CommentAuthorCharlotte
    • CommentTimeJan 19th 2017
     
    I am so over winter. After cleaning the ice yesterday, we had more in the evening. Everything is a sheet of ice out there. The dog refuses to go outside even though there is an area that is clear of ice. This is the first dog I have had that pees and poops inside. Had to cancel my PT today and the meeting with the lady from Total Care that authorizes another year of services from the VA. Third cancellation with her due to weather. It is suppose to get up to 40 today - hopefully warm enough to melt some ice.
    •  
      CommentAuthorCharlotte
    • CommentTimeJan 21st 2017
     
    Had meeting finally with the lady from Total Care to re-certify another year of respite through the VA. I was approved last year for 30 days of 6 hours a day but never used it. She encouraged me to start using it even I just went and walked the mall. I have thought about using it once a month so I can go to the caregiver meeting. It is for all caregivers, not just dementia. But when I took the class for Alzheimer's through Aging and Long Term Care one of the ladies told me most of the caregivers are dealing with dementia. The Alzheimer's meetings are at 5:30 - right in the middle of our rush hour which makes it a nightmare for this woman who hates stop and go traffic.

    I didn't use it last year because I didn't feel he needed someone to stay with him. But lately when I am over doing laundry he forgets where I am often finding him walking around the park looking for me. If the car is gone he doesn't seem to be as bad. I told her I will try next month (third Tuesday of the month) but she encouraged me to try a day next week. Not sure I am ready for next week.

    Our snow/ice is slowly melting which is good - means less chance the rivers will flood.