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    Wishing everyone still checking these boards the Happiest of New Years! It may not be that great, but let's still hope for some peace and moments of joy, and for those still in the trenches, some rest and some respite from the struggle.

    I am vegetating as much as possible today, because tomorrow I have to drive 450 miles (one way) to attend the viewing and funeral of a 91-year-old aunt. I'll drive down and go to the viewing tomorrow, funeral/burial/lunch on Friday, drive back on Saturday. Booooo. She did not die of a dementia, but of a long, downward spiral of heart/lung/circulation issues, with a bout of flu finishing her off. A nice woman--she died in a Hospice facility, which worked out best for her and the son she made her home with. I am taking the dog and staying the nights at my daughters. Not looking forward to it at all.

    What chills me is the indifferent attitude of my two surviving brothers, both at some distance out-of-state, but both with a dollar in their pockets and perfectly able to attend. Neither of them (nor their wives) is taking the trouble--just said casually that they can't go....like, oh, so what. Can't be bothered. Don't care. Of course they could go--they just don't care enough to want to. It was the same when Larry died--neither of my brothers bothered to come to either service. (Ohio or NY.) I realize people can't always show up, even for primary family members, but these guys and their wives don't even come up with conventional, pleasant lies to get out of it. The coldness just floors me.

    People, at least make a pretense of caring.
    • CommentAuthorMoon*
    • CommentTimeJan 1st 2020
     
    Happy New Year to you Elizabeth and to all who still come to this board. My husband died seven years ago, and I am taking life one day at a time. Nothing big to report.

    It is sad, Elizabeth, that some people do not seem to care enough for others to inconvenience themselves. I am so sorry that your brothers didn't come to your husband's service.

    Good luck on your trip. Be safe.
    • CommentAuthorCharlotte
    • CommentTimeJan 1st 2020
     
    I still come every day to check and post but as we all know not a lot of activity which is sad. I assume the newbies that will post once or twice do not stay around. I do hope they search the site as there is a wealth of information here.

    I finally called the mobile RV tech regarding my furnace. It runs right when it is below 35 but above it will run, the burner turns off for a minute or two then lights again for another couple before turning off when it hits the temp. Last time this happened I had one of the vents partially closed. They are all wide open, so not sure the problem. It is like the fan is not blowing enough to keep it from heating up. Thankfully the weather is mild the next couple days - 50s days, 40 at night, in fact it is 58 right now. Hopefully it just needs cleaning or something not too expensive. He will be out tomorrow.

    Sorry about your brothers Elizabeth. Guys tend to be more detached than women, at least with my brothers is runs that way and Art's brother is that way. Do drive safely. Forget about your brothers and try to enjoy yourself.

    Hope every one has as good of day as possible.
    • CommentAuthorpaulc
    • CommentTimeJan 5th 2020
     
    Yesterday's visit went poorly. Short version: Leannah wanted a shower after she had breakfast at noon (she got up when I and cat arrived). The aide took her and during the shower Leannah fell and hurt herself. So ambulance to hospital, I drove. Around 4 hours of waiting for 15 minutes of action. X-rays showed a compression fracture at T-10. So off feet, pain killers, and 24-hour aides so she doesn't get on her feet. For now one 2 aide to help with showering and a shower chair (which she refused yesterday).

    In the midst of this cat went missing and I looked all over for him. He found a new hiddey hole/sleeping place in Leannah's PJ draw.

    I noticed that Leannah hadn't touched her Xmas candy. It was too much so I took 1/2 away. Some melted because she cranks up the heat to maximum.

    They were already going to schedule an internal review due to her poor gait after dinner. Options being move to nursing home wing or buy wheelchair and use when her gait is poor. I don't know how this even will affect decisions.

    Interestingly she didn't ask for food at hospital. She wasn't able to answer questions such as who is the president and what was the last holiday. I had to tell them this was normal and not a result of the fall. She hadn't hurt her head.
    • CommentAuthorCharlotte
    • CommentTimeJan 5th 2020
     
    Sorry Paul. This is so hard to go through - not just the ER visit but all her losses and then how combative will she be coping with the changes. My heart goes out to you and your son. Hugs to both of you.

    I had to smile when you told of the new hiding place the cat found. He probably felt safer there with all that was going on.

    When I went to see Art today Jas was excited but once we arrived within 10 minutes she wanted to leave. Usually it is more like a half hour.
    • CommentAuthorCharlotte
    • CommentTimeJan 7th 2020 edited
     
    Wow - what a day. I have not seen Paula for over a month. I just have not felt like seeing her but didn't know why other than I was depressed. Today I stopped by and didn't take long to figure out why. Over Christmas she went to visit a friend in another town she said to get away from all the negativity. I am not sure if she was referring to her friends here being negative or her, but I guess it was a failure trip. Today went as normal - how are you? Me: OK. When I arrived she was with this elderly woman she had been helping who was taking advantage of her and "p" said she was going to break off from. So asked when we got into her apartment 'I thought you were breaking off helping her?' for which she said she was in the hospital and had no one else to bring her home. I said OK, then she started in on something which I can't remember what. It was negativity so I got up, told her I could not deal with her negative stuff today and walked out crying. Coming home I got to thinking of most of our times together. I say 1000% more here about me than I ever tell her cause she is not really interested and/or has not idea how to just listen. Our times together often go this way: pleasant greetings, then she starts complaining about everyone in her life with me trying to let her talk through it eventually ending our visit in smiles and laughing. I guess it is a combo of the counselor in me and the fact I grew up trying to be the peace keeper in my family that allows this scenario. Have no idea when I will see her again. Sent her a message explaining what I just said here about her negativity and maybe it is her negativity not her friends that is the problem. I listed some of her blessings she needs to concentrate on: network of friends; free wi-fi a neighbor allows her to use; her medical is paid for by government so she doesn't have premiums or deductibles to worry about and most of her Rx are $2 or less; she may not be in her son's circle of life but her son will never let her be homeless, starve or be without a good running car. That is more than many of us have.

    End of vent! Hope every one else day is going better.

    I will add - the last few days has been constant wind. I have watched my slide topper on the big slide be ripped apart which I will either have to replace or maybe just make sure the gasket is good up there. When the topper was torn back about a foot I was able to see the huge hornets nest that was built under the topper.
    • CommentAuthorpaulc
    • CommentTimeJan 7th 2020
     
    Today Leannah threw up and has a low fever. The staff are concerned about possible pneumonia and are taking steps to prevent it.

    Tomorrow will be the internal meeting at her facility on updating her plan. Biggest issue was wheel chair or moving her to NH. I'm sure this weekend's events will be part of the conversation. While they have people very bad off in the assisted living part they do not need as much supervision as Leannah. This time Leannah's relatively high activity level is working against her. She is able to walk around, get lost, and become a fall danger so she needs to be visible to staff.

    I was interviewed today for TV news at Alz Assn offices in DC. We will see what happens, I'm told I did well and they may need a follow-up interview on Thursday since one of the participants dropped out

    Charlotte, I'm sorry that Paula hasn't been supportive of you as you have been of her.

    And I know know what is a slide topper. Yes, seems worth fixing to help protect what is under it from the weather. But hornets, ugh.
    • CommentAuthorCharlotte
    • CommentTimeJan 7th 2020
     
    If you end up online let us know. Sorry for the changes Leannah is going through. Hope the fever goes away and she is feeling better that way. If she has to move it will be a big change for her. Plus, for you setting up her care and getting new people to know how her illness affects her.

    Response back from Paula - OK. maybe we can get together for lunch some day, otherwise see you when you are ready. Truth: she doesn't care or doesn't want to deal with anyone's problems but hers. Oh well.
    • CommentAuthorpaulc
    • CommentTimeJan 9th 2020
     
    Fever went away but they are still concerned about aspiration so she will get ST evaluation.

    I am wondering how much of a change the move will be for her. She will know some of the staff and probably some of the residents. The room will be very similar She is becoming less aware of many things. She will miss her favorite nurses (who I suspect will visit with her) and being able to walk and see the bunnies. But that walking is becoming harder and harder for her. We will just have to wait and see.

    Sorry about Paula.
    • CommentAuthorCharlotte
    • CommentTimeJan 9th 2020
     
    Where my husband is there was one of the women that was not suppose to walk due to falling problems but she insisted on doing it. By law they can't restrain to keep safe so she was walking and fell. At first she just had a cut on her forehead and a big black eye. She is now on hospice due to brain bleed from the fall. It is sad that they can no longer due things to keep them safe.
    • CommentAuthorpaulc
    • CommentTimeJan 13th 2020
     
    Leannah will move into the LTC at her facility tomorrow. She is supposed to be told today. I looked at the room on Saturday and it is very similar to her current one. He might be even quieter because a woman who screams and yells a lot has been next door to her for a few years.

    There was a newer wheelchair and fancy walker, but not a rolling one, in her room. She is participating with OT and PT to heal and get walking again. She could walk 30 feet by Sunday.

    She didn't wake up for me on Saturday. She work up before 7am to the surprise of everyone, had breakfast, threw up, and went back to bed. She didn't chew, she just swallowed her breakfast. Anyway, she couldn't wake up at noon, she woke up at 2pm. She wasn't that hungry at lunch and her sister told me that she didn't eat much yesterday, so they are keeping their eyes on her eating. This is a very sudden shift from eating huge amounts to almost nothing. She hasn't had an OxyContin for a week so that isn't an issue.

    I suggested they order her a wheelchair and walker while my insurance will pay. Medicaid will only pay to rent one, not buy one.. Her wheelchair needs to be custom fitted, it is clear that the nice one they have for her isn't comfortable for her. I think she will need the wheel chair for part of the day even when she is walking on her own again.

    She is declining rapidly. I see so many changes every week.
    • CommentAuthorCharlotte
    • CommentTimeJan 13th 2020
     
    When she can't be woke up have you checked her heart rate? When Art's is slow you can't wake him up which is part of the reason he is on hospice - irregular heartbeat. If you don't know, next time she is that way have them check it to rule the heart out making it the but she has causing it.
    • CommentAuthorpaulc
    • CommentTimeJan 13th 2020
     
    Heart and breathing are checked often. The nurses suspect she slept poorly due to having an aide in the room at night. The night aide has been eliminated.
    • CommentAuthorCarolVT
    • CommentTimeJan 17th 2020
     
    Hope Leannah's move went smoothly and that she is doing well at the LTC.
    • CommentAuthorpaulc
    • CommentTimeJan 17th 2020
     
    The move went smoothly. We are not sure if she understood when she was told about the move on Monday. She said "OK" and didn't have any questions. Once she moved she seemed happy that she knows some of the staff and residents on her floor.

    There has been one pooh incident (smeared in bathroom and herself) which was well handled by staff but not the private aide (she isn't returning) and more throwing up. Her appetite seems to be improving but I will need to talk with staff on Saturday.
    • CommentAuthorCarolVT
    • CommentTimeJan 21st 2020
     
    I am not getting any new comments when I sign on. Anyone else having the same problem? Any idea why?

    Wishing everyone well, safe and warm.
    • CommentAuthorNicky
    • CommentTimeJan 21st 2020
     
    I'm not getting any new comments either. I just assumed no one is commenting.
    •  
      CommentAuthormary75*
    • CommentTimeJan 21st 2020
     
    I'm getting the new comments okay.
    • CommentAuthormyrtle*
    • CommentTimeJan 21st 2020
     
    Paul, I'm glad the move went smoothly. It's so hard on everyone when our spouses transition to a new stage. You're a real trooper for hauling that cat around.
    • CommentAuthormyrtle*
    • CommentTimeJan 21st 2020
     
    Charlotte, That's rotten about Paula. It's got to be hard to keep a hopeful outlook when all this negative stuff is swirling around you.
    • CommentAuthormyrtle*
    • CommentTimeJan 21st 2020 edited
     
    Elizabeth, That's awful about your brothers not attending Larry's funeral or even acknowledging their absence. It means so much to have family there. I remember every person who came to my husband's funeral, especially those who had to travel some distance.
    • CommentAuthorCharlotte
    • CommentTimeJan 21st 2020
     
    There has been no activity for a few days - until today which is why no comments.

    Had a horrible weekend. Had a good pity party and cry over the weekend.

    Friday I noticed the grey water was dripping at the hose where one of the last things Art did was we put in a connector just below where the sewer hose comes out of the bay to make disconnecting easier when moving. It leaked last winter but didn't once it warmed up. It was fine until the freezing weather we had when I left the water running during the night. I put a clamp around the hose at the connection but it still dripped. After a weekend pity party I decided I am not going to worry about it since it is just the grey water. This followed the two weeks of constant high winds that tore up the big slide topper and who knows what else since I don't have a ladder that gets me high enough to see and I won't go on the roof. It has held two men both over 200 pounds but I still am leery. If I could loose 50 pounds then I would.

    I received the Medicare summary for his hospice care. I could not believe how much they charge. The bill for 20 days in October was $5424.74. I checked online - November bills is $6489.30. The base for hospice is $5705.10 - the rest is for nurse and social worker visits. Don't know why a social worker needs to visit him. Guess I need a meeting to explain some of it. Since he really doesn't need any care, doesn't have anyone coming in to shower him - showering and shaving is left up to me to get him to do, why so much. The nurse arrives, checks his vitals, chats with the staff then leaves. Between the facility monthly charge and hospice it is costing over $10,000 a month - glad I don't have to pay it.

    As for Art - that adds to the depression, the being in limbo. He is gaining weight back - guess they are giving him 2-3 helpings now. He is up to 158 as of last week. They need to just work to maintain not put it back on him. The yo-yo comes because I had changed my thinking the end was coming. Now, he seems to be perking up some. I just want it to be over.

    Paul, I hope all is still going well with Leannah and you. We always hope our loved one is taken well care of but forget about yourselves. We are the one with the hardest job - building a new life once the end has come. Until then we have to find a way to have a life while still in limbo.
    • CommentAuthorpaulc
    • CommentTimeJan 25th 2020
     
    Today was another meeting with Rep Beyer. I was there as a volunteer with the Alz Assn. It was a very productive meeting.

    The meeting was about dementia and to get help with the Improving HOPE for Alzheimer's Act (HR 1873/S 880). Beyer offered to help push the bill to a vote on the floor. It has around 190 co-sponsors from both political parties. He is in a good position to get action on it. We were told by a staffer when Beyer was out of the room that this was going very well.

    What is this act. This is a follow-on to the HOPE Act. The HOPE Act created medical billing Code 994893, which is a care planning benefit for Medicare beneficiaries with dementias. Since 1/1/2017 the Centers for Medicare and Medicaid Services allows clinicians to be reimbursed for providing a comprehensive set of care planning services to cognitively impaired individuals and their caregivers. This is a move away from 15 minutes doctor visits to a comprehensive plan meeting that is much longer and includes multiple people in the medical field, the patient and their caregivers. Leannah has benefited from this bill, our private insurance has covered this billing code. However, fewer than 1% of seniors with dementia in 2017 have received this benefit. Patients and providers are generally not aware of the benefit. As awareness increased so has the use.

    This new bill will address the problem of low usage of the benefit. It will improve on the billing code, it doesn't include all of the provisions of the original HOPE for Alzheimer's Act. It will require HHS to educate clinicians on care planning services and report on the barriers to people receiving these services so the rate can be increased.

    One of the people at the meeting was a financial planner in her 30s. She is active with Alz Assn because in her past 5 years as a financial planner she has witnessed her clients develop dementia. She has reported this to their family members and now takes actions such as accompanying her clients to doctor visits. Alerts to her are successful people announcing they are retiring prematurely, being tired, and of course suddenly withdrawing large sums of money. It makes you think about who should be on the front line of dementia detection.

    There was also talk of a bill that would lower the age of federal help for people with dementia to those under 65. A variety of programs are age based, such as meals-on-wheels. This might be part of the Improving HOPE act but I'm not sure.

    I had very little to say, the point was to be there except to emphasize the need for help with younger onset dementia and non-Alz dementias.. 2 authors of a play called Kalaidascope were there. The play is about Alzheimer's, stared a woman with Alz and the show would break down through the running and development Alz itself.
    • CommentAuthorCharlotte
    • CommentTimeJan 25th 2020 edited
     
    Never heard of it and I would think the majority of doctor offices have not either.
    • CommentAuthorpaulc
    • CommentTimeJan 25th 2020
     
    Yes, that is a major problem.
    • CommentAuthorCharlotte
    • CommentTimeJan 28th 2020
     
    I have a meeting with hospice today to remove him since he has stopped loosing weight. The call did not surprise me. And, for $6,000+ a month they really are doing nothing.
    • CommentAuthorCharlotte
    • CommentTimeJan 29th 2020
     
    Received a phone call about 1:15 today. They wanted me to come get hubby in the shower. He had poop on him and was fighting them. They didn't want him to hit them. Previously he would let the director to clean him. I told them leave him in his room and let him chill.

    When I arrived he was in the bathroom arguing with them. He wouldn't undress until the girls left. He washed himself good but he was smearing poop all over him from the wash cloth. It took about three times with a clean cloth to get him clean. But, as I dried him I found he still had poop oozing out so it was hard to dry him and get the zinc put on him. Took him back to his room wrapped in his bathrobe - I don't like to dress him in the bathroom due to you don't really get dry. Got him dressed and shaved then let him have his brownie and root beer I brought him.

    I was upset because his clothes were suppose to be washed but many were missing. He had shirts that weren't his - I wanted his. He went in with 12 pair of socks - only 2 of the 4 pair there were his. His closet is locked so he can't be taking them elsewhere. It is a case - IMO - of them not getting them put away in his closet when washed.

    I did not plan to stay long but it was after 5 before I left. I was sitting on the sofa watch Davy Crockett with him when sweet Karen sat down beside me. So I was holding both Art's hand and Karen's. She was having a bad day - restless then when she sat down wanted to snuggle. Thus the reason I stayed until dinner was served.

    Came home and figured since it was bathing day gave the dog her bath I had been putting off. Even though I had a glove on the one had I used to clean his bum the other hand smelled. I couldn't get it out of my nose! Helped giving the dog a bath but the final step was sniffing the vapor rub!