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    • CommentAuthorJan K
    • CommentTimeOct 1st 2018
     
    This morning I tried to do the monthly check on my husband's medical alert button. After waiting and waiting, it said that it couldn't get a cell phone signal, and that it was terminating the call. (I would have thought that it would keep trying until it got a signal.) We have two cell phones we use all the time, and have never had any problem with a signal. This unit is supposed to work at home or away, and is even supposed to be used to track someone if they are missing.

    As far as I'm concerned, these medical alert buttons are sort of like the brakes in your car: they need to work every time, the first time you try. It gives me chills to think that DH could have been trying to call for help and that's when we found out the stupid thing wasn't reliable. All the previous monthly tests worked fine, but one fail is definitely one too many.
    •  
      CommentAuthormary75*
    • CommentTimeOct 1st 2018
     
    What did the medic alert system say when you told them about the problem? Was it the fault of the phone service? The monthly fee is hefty enough — at least here in B.C. — and this is serious business. Hope you got some answers. Please let us know.
    • CommentAuthormyrtle*
    • CommentTimeOct 2nd 2018
     
    Gmorning, October.
    Ease us into winter with grace
    Calm your storms
    Turn down the volume on the world
    And I promise, if you’re kind,
    We’ll dress the kids up real cute on your last day.

    Lin-Manuel Miranda
    •  
      CommentAuthorCharlotte
    • CommentTimeOct 2nd 2018
     
    first day of October was a nice day. Today has been sunny but windy - too windy.
    •  
      CommentAuthorCharlotte
    • CommentTimeOct 4th 2018
     
    I am totally surprised by how my attitude and emotions have changed since he was placed 16 days ago. Before I was so angry, I dreaded the thought of him coming home from day care. I found all the hurts of the past ruled. Since placement I have a calm peace. I actually feel like hugging him which has been missing for years. I feel more love for him and am allowing myself to. The tears of him loosing what freedom he had are not often now. Yesterday he asked where the motorhome we live in was - first time since placement he has remembered. Was also the first day I did not sneak out. I told him I had to leave but he had to stay. One of the aids saw me leaving with him following so she called for him. I think he would have stayed but glad she saw what was happening.

    I finally got his wedding ring from him. He took it off to clean and I asked if he wanted me to take it so he wouldn't loose it. He said 'OK, it doesn't fit me anyway'. I looked at it driving home and thought it was not his - it was smooth on the edges. When I got home using the flashlight to see better I saw vague lines. They were gold bands with ridges around them. Mine got stolen back around 1990 but I never replaced it. I guess it reasons after 47 1/2 years for the ridges to get worn off is expected.

    Going with Paula tomorrow to a country market sales - like a flea market with only used things, no new, in a nearby town. Should be fun but I know I will be hurting when I get home. Got the water almost done for winter. Was getting stiff so I went over to the hot tub. Might tomorrow night too.
    • CommentAuthorbhv*
    • CommentTimeOct 5th 2018 edited
     
    Wow, Charlotte, that's awesome. When I was looking at a place they said I could become the loving spouse again and I just shrugged that off. Didn't think it was possible. But I am glad to hear you are experiencing that. I am too in a slightly different way, but it is still a far better thing than I expected. Dontcha think? Nice to not have to sneak out too.

    I have been wearing Jim's wedding ring. I hadn't been wearing mine for some time. I broke a prong off one ring. Then he bought me another set but was afraid of breaking that. So I only put them on when going out of the house. I had hidden his after he kept putting it on his thumb. Thumb was turning blue the second time and it took awhile for me to get it off. But when I got back from the hospital I started wearing his ring and sometimes his dog tags.
    • CommentAuthorNicky
    • CommentTimeOct 5th 2018
     
    Charlotte - after I placed my husband, I felt the same way. The day I placed him in the private facility, the nurse talked to my son & daughter & told them that was the best decision I could make. She told them our relationship (hb & me) would improve now that I was no longer his primary caregiver. She also asked them "When was the last time you saw your parents happy?" And she was so right! I felt so much better & wanted to spend time with him. I'm glad to hear you're feeling better, you certainly deserve to feel peaceful.

    bhv - sorry to hear you're struggling, but it hasn't been too long - you need time to adjust to your new life. I can't relate to your situation.....yet.... but I'm sure it's difficult. This whole journey has been difficult for all of us!!
  1.  
    Wearing your husband's ring is a nice thing to do. I still wear Larry's socks--have worn them for years--nice men's over-the-calf dress woolen socks. Who's to know that they are men's socks and not women's? Just plain black or gray socks. But I've made a huge stride (pun--ha,ha) in my progress. I bought several pairs of my own socks--a brand called Darn Tough, made in Vermont. Expensive, but supposed to be "Buy It For Life." So we'll see. Casual, cute, fun patterns and colors...woo-hoo, my own socks.
    • CommentAuthorbhv*
    • CommentTimeOct 6th 2018
     
    Ooh, sounds like fun. I worked in a "man's world". We wore suits and ties. I tried a dress once. And threw it in the trash that night. But some of the guys would rebel with interesting socks and ties and suspenders. That was always fun. You're at a meeting and a guy has Porky Pig socks and tie. LOL.
    •  
      CommentAuthorCharlotte
    • CommentTimeOct 6th 2018
     
    I agree about dresses Bonnie. Girls had to wear dresses to school and they were always in the way of playing. Thankfully we were allowed to wear shorts under them. Couldn't wait to get home to change into play clothes which included pants, not dresses or skirts! My senior year in HS they allowed girls to wear pant suits which were almost as bad. I got rid of my last dress or skirt years ago. I did break down summer before last and bought a sun dress that I could wear around the MH - without a bra! Didn't care if I was out in the yard and someone noticed. In fact, it surprised me the number of women that find any reason not to wear one around here. My husband wore shirt and ties even in grade school. Wore them all his working days. Then when we moved into the RV 14 years ago he switched to jeans which I could never get him to wear before.
  2.  
    I was the last graduating class in high school that had to wear skirts and dresses to school--no slacks allowed. I graduated in 1967. I don't mind skirts and dresses, but find I wear them less and less...and slacks more and more. And I like heels, but find they just aren't very practical for my lifestyle. I find that I'm wearing dressy flats most of the time for dress-up instead of the one pair of nice heels I have left. And nobody seems to wear nylons anymore--if I wear them I wear black ones or else black tights. I do like to have a sundress in the closet for the hottest days of summer--don't wear it often, but am cool and comfortable when I do. I don't know if I want to get into an underwear discussion on this forum that includes guys. So I'll just say the less the better, and the more comfortable the better. Ha, ha. And if it isn't comfortable, I don't wear it. And that's all I'm going to say about that. (Smile.)
    • CommentAuthorbhv*
    • CommentTimeOct 6th 2018 edited
     
    The dress went in the trash can because men who had been treating me as a professional equal suddenly that day kept asking me to get coffee for them and one guy actually came in my cubicle and said "Hun, could you type this for me?" Other than that one dress experiment, I wore a skirted business suit with a woman's bow tie with a gold tie bar. I expressed individuality with bracelets and earrings.

    I do remember the quick change in school dress code. In 1969 we had moved to a new neighborhood and over the summer I had made several dresses. I was a sophomore in HS but since I was nearly 6 feet tall, couldn't find clothes to fit and made my own. Suddenly we could wear jeans to school! Awesome! I have a 34" inseam, but since hip huggers were in style I could wear boys jeans!
    • CommentAuthorNicky
    • CommentTimeOct 7th 2018
     
    I had to wear a uniform for all my school years except for grades 2,3 & 4. The schools were run by nuns - they wore habits back then, so they liked to see us in uniforms. I had different uniforms depending on the school, but I didn't like any of them. To this day, I will not wear a white buttoned down cotton long sleeve blouse - they were part of the uniforms - hated those blouses. Last time I wore such a blouse was 1968/69! I did however were skirts & dresses for a while. Also wore mini skirts back in the early 1970's - can't say my mother liked that - but by then I was in my early twenties & working, so she couldn't say too much. That's when I was dating my husband & he certainly didn't complain. I don't wear dresses or skirts anymore - pants & jeans are just more comfortable.
    •  
      CommentAuthorCharlotte
    • CommentTimeOct 9th 2018
     
    I should always check mail. I paid the $700 to the nursing home today then get a notice in the mail it has been reduced to $17. Big difference. Hope they give a refund cause I don't plan him being there long enough to use up the $700. Because they are paying his medicare part B they are changing the day they pay from the third Wednesday to the 3rd of the month. Now I have to refigure bill paying schedule. oh well.
  3.  
    Charlotte, can you just stop payment on the check? Once they get it and put it in their accounts, it may be hard to get the funds back quickly. Or call them and tell them that you will pick it up--tell them it is a mistake and not to cash it or enter it into their books in any way.
    •  
      CommentAuthorCharlotte
    • CommentTimeOct 10th 2018
     
    I did the payment online. I called her this morning and told her about the notice that came after I paid it. She called me back telling me it would take a week for a refund check to be sent. From now on I will write an old fashioned check to pay them!
    •  
      CommentAuthorCharlotte
    • CommentTimeOct 12th 2018
     
    To show how much calmer I am now that my husband is not here: As you know I live in an RV park. The neighbor parks parallel instead of pulling in. I always felt at some point they would hit my car. Today she did. Her car has all the bells and whistles to warn of getting close, but it either didn't go off or more likely the noise of the gas truck filling a propane tank nearby which is really noisy prevented her from hearing it . She feels bad but I just said oh well - more worried about her new car. Mine is 18 years old - first dent. Put a big dent in the corner of my bumper but dented the side of her car and she now has white paint on her silver car.

    I told her if this had happened when Art was home I would have went ballistic but now I just say 'oh well'. Surprised me cause I have worked hard all these years to not get in an accident. I told her they say we all will get in at least one accident in our lifetime - this is mine!! Then laughed. Didn't help, she feels really bad. She is taking off for the weekend with her sister. I told her sister what happened and to make sure she enjoys her weekend vs fret about it. Make sure she has plenty of wine with them!!

    I had bought a hose with heat tape on it but it had a horrible taste that only went away after I got all the water out of the line that had been sitting in it. Not acceptable. I knew this was a common problem but hoped I would get one that didn't. Took it back yesterday. We had a 25 ft water hose we bought a couple years ago but never used. We have a almost new 30 ft heat tape a guy that decided not to stay the winter gave Art last year. It finally cooled down in the MH around 10 to turn the furnace on so I could warm the hose up to uncurl it. I put foil on, then run the heat tape down the side tapping it every six inches. Then put those hose foam covers over it. Finally finished around midnight. This morning I finished putting tape down the seams of the foam, then spiral wrapped electrical tape on it all. Went to hook it up today and could not stop it leaking at the faucet. I use plumbers tape all the time but that didn't help. Tried putting an double washer in but that didn't help. So cut their plastic connector off and put on a brass one. (we have a collection of them because those plastic ones usually are crappy) So far so good. I won't finish wrapping it up for winter until I know for sure it is not going to leak.
    • CommentAuthorbhv*
    • CommentTimeOct 12th 2018
     
    Good gracious that's quite a process.

    We are having quite a lightning and thunder storm. I havent heard thunder like this since Minnesota circa 1978. And now it is pouring! They said slight chance of showers.
    •  
      CommentAuthorCharlotte
    • CommentTimeOct 14th 2018
     
    Yesterday I went to see hb all his pants except the ones he had on were in the dirty clothes basket (pants and shirt in 5 days but only one pair underwear and socks). Brought him and the clothes to wash. He really didn't act like the MH felt like home anymore which I guess is good although he was not keen on going back. Got him there as they were serving dinner so that made it easy to leave. I think I figured out why all his clothes are going in the basket. Here he had hooks by his bed that he hung his clothes on when he took them off. There he does not. Had to go back today so told the CNA my theory so when he takes his clothes off have him put them on the unused night stand by the one I bought to see if that helps.

    Received a call this morning from the nurse that last night they could not get his CPAP to turn on. Got there and went right on. The aid said they figured out it was not plugged in tight on the back. I told her you also have to hold the button down. I hated going back today but Jasmine loved seeing daddy and all the others. The half hour we were there she didn't sit still - was bouncing from one person to another.
    • CommentAuthorWolf
    • CommentTimeOct 15th 2018
     
    It sounds like overall things are working out about as well as could be hoped for. I'm sure it's very hard to go through. Try and do something for yourself where even small things that wouldn't work with Art might work now - a food he didn't like but you do, a show you like on TV louder, sleeping with the light on. It was simple things that gave me a touch of comfort.
    •  
      CommentAuthorCharlotte
    • CommentTimeOct 15th 2018
     
    Oh ya, I started on the foods before he moved. I have very few foods here that he would like - lots of fresh veggies, refried bean (made from dehydrated refried beans) for burritos and 'crunchwraps' taco bell sells I figured out how to make but I use a 'street' flour tortilla instead of crunchie corn tortilla, lean pockets, etc. I did buy some more ribs today I will put in the crockpot in the morning along with BBQ sauce. Last time I made them he was not crazy about them probably because chicken and polish sausage is about all he likes in meat anymore.

    TV is louder so I can hear it in the slide. He sat right in front of it. To have it loud enough for me it was too loud for him. I rarely watched tv but now will turn away from the computer and watch shows more now. Otherwise I listen to TV while playing games. I sleep with more blanket weight. I grew up with no heat so we had quilts on us. He liked just the electric blanket. It doesn't work anymore so I have the blankets which I love to curl up in.

    Had EMG testing done today - do have mild carpal tunnel in right wrist.

    Neighbor is still trying to figure out how to take the dent out of my bumper. Someone told him if you pour boiling water over it the plastic will pop back out. Will see if it works!
    • CommentAuthorbhv*
    • CommentTimeOct 16th 2018
     
    Sunday was such a difficult day. Eventually I realized it was the 14th. It has been two months. I think I was also sad over dealing with his truck. I had always planned to give it to my youngest brother. But he is on the other coast. Last week I decided a cross country trip was NOT a good idea, especially at this time of year. Was going to.ship the truck but brother suggested selling it here. Several prospects fell through. Everyone was saying it will.sell really quick on craigslist. But I have heard of some horror stories. Too afraid to do that. Then, on Friday, a well known neighbor bought it! He was going out of town and will pick it up on Thurs. He even paid a fair price for it.

    I had a broken microwave in the garage and Sat was a neighborhood cleanup event. The neighbor lifted the microwave into the truck for me. (It was a big, over the stove unit.) And I got rid of all kinds of broken electronics. Went through the truck with a fine toothed comb and found a set of keys I lost back in 2015. I had looked under that seat I don't know how many times!

    So lots of good things happened last week. I should be feeling much happier. Oh well, one step at a time.Family want me to visit on the other coast, but I don't feel like I want to be around people. I think I need to try the grocery store and golf again before cross country trips.
    •  
      CommentAuthorCharlotte
    • CommentTimeOct 16th 2018
     
    Sounds like you are surviving and making progress moving forward. Inch by inch is OK. I agree, you had enough drama from his family you need the break. You love golf and find it relaxing so I vote for that.

    Today is one month since placement. My emotions are different than a total loss, but they are ours and we need to be proud to feel them. Too much of the time during this disease we deny ourselves the emotions.
    • CommentAuthorbhv*
    • CommentTimeOct 16th 2018
     
    Wow, thanks, Charlotte. I am going to write that in my journal.
    "My emotions are different than a total loss, but they are ours and we need to be proud to feel them. Too much of the time during this disease we deny ourselves the emotions. "
    • CommentAuthorpaulc
    • CommentTimeOct 18th 2018
     
    I will have my 2nd meeting within 4 weeks with Leannah's ALF. The first was due to changes in he behavior and he being found with her hands around the throat of another resident. They are tweaking her meds and the discussion was focused on how to improve her care, since she is more able she has frustration with the other residents. So looking at more individual activities for her. They are even checking with a local group home for people with TBIs since they think the residents will be more compatible. I have doubts since Leannah needs a lot of routine, she acts out when routine is disrupted, and a group house aimed at integrating its residents with the greater community could result in faster deterioration. But they are checking out the staff (but overall staffing and the quality of the staff).

    Last week she grabbed a resident's wrist because the other resident was taking food off of someone else's plate. So they had an internal staff meeting this week and we will do a phone conference next week (thankfully I don't need to take another day off of work) and I'll see if her sisters can join it.

    I had my accountant run my 2017 financials through the new 2018 tax laws (a friend of mine did this with unhappy results). My accountant reported over a 10% increase in federal taxes for me. I was looking into LTC insurance for myself but this eliminates that idea, money was tight before, now I am looking at less income. Fortunately when my tax deduction was automatically reduced earlier this year I went back and raised my deduction closer to my 2017 deduction so things won't be as bad as they could have been when I file 2018 taxes.

    Good news is that I got my statement for my wife's IRA and it has a lot more money in it than I thought. This money is used only for Leannah's care so it doesn't help me with my expenses but I feel better knowing I can go longer with private pay for her.
    •  
      CommentAuthorCharlotte
    • CommentTimeOct 19th 2018
     
    Ok - it is that time to change Medicare providers if you want. So, here comes the robo calls - numerous ones every day starting at 8am and going until 9pm. I block them but the programs I use you have to have the number blocked before it will. So, each new number has to be blocked but we all know they call from a different one next time. There should be a law against these robo calling.
  4.  
    Know what you are dealing with, Charlotte. I have an answering machine and a phone with caller ID. I never answer the phone unless it is someone I know. If by some chance it is someone I want to talk to, they can leave a message.
    •  
      CommentAuthorCharlotte
    • CommentTimeOct 19th 2018
     
    problem is with my cell phone if I don't answer it goes to voicemail then I have to go in there and delete it. So I answer and hang up right away.
    Such a pain!
    • CommentAuthorWolf
    • CommentTimeOct 23rd 2018
     
    How are you doing Charlotte?
    • CommentAuthorMitsou*
    • CommentTimeOct 23rd 2018
     
    Coming back to the Alzheimers’ Spouse board I thought I am no longer the spouse of an Alzheimer’s sufferer. I am not even a spouse since we buried him 10 days ago. I feel pretty useless. After almost 11 years of concentrating on DH I am at loose ends here. The house is super quiet. His winter clothes that I brought from GA are still in bags, next to the bags of his current clothes I brought back from the NH. I need to push myself to do something. I brought back the collages I had made for him showing many photos of him throughout the years when he was fine; I can’t put it up here yet, it’s too painful. So I don’t do much and feel bad – I know I should move but it is hard. At least it is sunny and I can look outside.
    •  
      CommentAuthorCharlotte
    • CommentTimeOct 23rd 2018
     
    Sandra Day O'Conner diagnosed with AD.

    https://www.npr.org/2018/10/23/659816933/sandra-day-oconnor-says-she-has-dementia-withdraws-from-public-life?utm_source=twitter.com&utm_medium=social&utm_campaign=politics&utm_term=nprnews&utm_content=2051
    •  
      CommentAuthorCharlotte
    • CommentTimeOct 23rd 2018
     
    mitsou - you are still part of the family here. Have you tried reading through the 'widow and widowers' thread? What you are going through is normal. Everyone talks the path of 'grief' on their own timing. Some pickup and go on right away, others take months or years, the rest in between. Stay with us because there are still many who have gone on before and have stayed to help those like you and me go through this.

    Wolf - I am doing alright. His doctor (rather PA) was not happy that I expressed my feelings on him prescribing that anti-diarrhea med that has warnings everywhere including the PDR against giving to someone with dementia and/or prone to dehydration. So they have 'suggested' I find another doctor. there is only one other one in the area otherwise I would have to travel to Walla Walla. Guess now that he has Medicare and Medicaid and Part D I will look for a non-VA doctor. But most take 3 months for new patients to get in.

    I am still debating whether to get another CPAP machine. He was starting to take it off even before I placed him, so it won't be long and he won't use it anyway. But, it will take a doctor's order to stop it.
    • CommentAuthorlindyloo*
    • CommentTimeOct 23rd 2018
     
    Hi Charlotte, When my partner was diagnosed with sleep apnea she was too far into dementia to be willing to use the thing. I chose not to worry about it, and just told the doctor it was a no go. Sorry your your husband's doctor's feelings were hurt regarding the meds. My my. He could have chosen to take things differently and thanked you for catching the problem and alerting him.
    • CommentAuthorRona
    • CommentTimeOct 23rd 2018
     
    So we switched Lisa to CBD oil actually 50\50 oil CBD and THC, at the beginning of this year and started to take her off of most of her anti phycotic drugs she now only has limited trazidon and a butran patch. It has been fantastic prior she was always anxious, afraid, walked hunched over, (Being hunched over was a result of the combination of drugs) she now walks straight is more alert happy not afraid and she has actually become more responsive. Has started focusing on TV which she has not watched for a couple of years it is so great to see her this way. I had to get a prescription from a doctor who prescribed the dose etc to be able to get the oil from a medical marijuana supplier then the facility would administer.

    For our American friends as of the 17th of this month pot has become legal in Canada. The result The government has basicly shut down a lot of the pot shops, including their web sites if the stores want to get a license to operate legally they have to follow the rules which means for most not selling now. The downside of this there is now a shortage the medical supplier I used, Tilray, has no supply and will be at least another week. I spent yesterday travelling around to different shops to try and find what I needed I have found a short term work around she is doing so well just don’t want to see her slide. HOpefully this is just a glitch and things will settle out.

    Bottom line the change has been miraculous not a cure by any means but she is happier, more content, eating well and just pleasant everyone has commented on this. Something for you to thing about.
    •  
      CommentAuthorCharlotte
    • CommentTimeOct 23rd 2018
     
    Great report Rona. Her quality of life has improved and that is all we can ask for since a cure is not possible. Her quality of life is better which helps yours to be better. Win win situation!
    • CommentAuthorJan K
    • CommentTimeOct 23rd 2018
     
    Last week was DH's quarterly review by the Council on Aging. There had been a lot of medical visits and new or worsening health problems since the last review. After discussing them and entering them in DH's record, the case manager said, "How are you dealing with all this? How are you coping?" I was speechless for a minute. Those are questions that don't come up a lot. More like almost never. It was really helpful to have someone acknowledge that this was difficult, and that anybody faced with this situation might have trouble coping. I wish her concern was more common. I don't think caregivers would feel so alone if someone would just acknowledge how hard this is--and I mean more than just once every year or so.
    •  
      CommentAuthorCharlotte
    • CommentTimeOct 23rd 2018
     
    Aging and Long Term Care sent me a questionnaire every 6 months to measure my mental health. Each one came back more depressed/stressed. They did send me to a counselor at first but all she wanted to do was talk about my husband's mental health so I quit.

    Glad to see they are thinking of you, but what are they going to do to help you?
    • CommentAuthorpaulc
    • CommentTimeOct 24th 2018
     
    Had a conference phone meeting with ALF yesterday. Not happy with results. This is resulting from when Leannah was choking another resident a month ago, and then grabbed another resident by the arm 10 days ago. I suspect a relative of the resident and/or the family council is putting pressure on the ALF to do something about Leannah and may want her out. We reviewed 3 options yesterday:

    1) Move her to a group for for people with TBIs. I feel this would result in a major setback for Leannah, she needs a huge amount of routine. Group homes aim to integrate their residents with the larger community. I don't think this will work out well, we basically did this 5 years ago with a regular ALF and it didn't work out well.

    2) Bring in an aide. Leannah is distancing herself more from other residents, calling them stupid, and avoiding some activities to avoid them. So have someone there for 10 hours day (at least $6,000/month by my calculations) to do higher level activities with her. We will do this in the short term but I suggested only 4-6 hours/day since Leannah will probably find 10 hours invasive and become more agitated.

    3) Full psychiatric makeover (they have been doing physical exams and making sure that a UTI is not the problem). This brings out a major problem, the neuropsychiatrist left mid-September and they are looking for a replacement. In the meantime they contrasted with a neuropsychologist or a neuropsychiatrist (not sure which) to come in 2 days a month. Leannah is under the care of a neuro Nurse Practitioner who knows her well but I think she is limited in what she can do in terms of medication changes. We (Leannah's sisters and myself) feel that problems arose after they changed Leannah's meds to remove problems of shaking and sedation but have introduced other behavioral problems. Plus dementia is a moving target and drug changes are needed over time.

    Her sisters are very angry. I am more just shaken.
    • CommentAuthormyrtle*
    • CommentTimeOct 24th 2018
     
    Paulc, I don't blame you for being shaken by this news and I can understand why your wife's sisters are angry. The suggestion of a group home seems designed to meet the needs of the institution, rather than the patient.
    • CommentAuthorRona
    • CommentTimeOct 24th 2018
     
    Jan K I have found the Neurologists who have dealt with Lisa have always been watching out for me always asking how I am doing and do I have support. I always tell them the best support I have is this website the groups I have tried have not worked for me as they may be for alz caregivers but not specifically for caregiver spouses and especially not for early onset.

    Paulc you are right where I was 10 months ago. Facility said they couldn’t keep LIsa, too disruptive, only options hospital or I had to provide 24/7 companion. I had to do that for awhile to keep her out of the hospital not cheap. Then the health authority would not place her in another facility until she was more stable catch 22. Out of the blue the neurologist finally referred her to a tertiary care unit did not even know this level of care existed it is for people who are not coping they go there instead of hospital to get stabilized so they can go back into a facility. It has been wonderful just what was needed. It is in a privately run facility but Since it is run by the health authority it is funded differently and staffed differently. As well it costs much less $900 a month. ONly 12 beds and Always 3 staff very low stimulation and in my home town perfect. That combined with taking her off the meds and putting her marijuana oil, see previous post, has made all the difference to her. She is stable and has a much better quality of life. I just hope this continues. I would suggest to everyone they at least look into the oil lisa is on a %50 CBD 50%THC oil. They have also used this approach with other residents and have had success. Good luck Paulc it was a very stressful time for me.
    •  
      CommentAuthorCharlotte
    • CommentTimeOct 24th 2018 edited
     
    My day today: I had to pick hb up to travel to Walla Walla for a new CPAP. I notified them last week I would be there by 8 to pick him up. Arrived to find him asleep in a chair in the hallway. He had white all over one side of his face, had not shaved nor brushed his teeth. Got him cleaned up and left stopping by the nurses station to get his sertraline and amoxicillin. Sounded like a lot of the antibiotic left so asked her = she said about 7. Now if they started last Wednesday night, there should have been only one left. I was ticked. I took two pillows in with his name in big black letters. Only one there today -asked them to please look for the other one. I don't want him using the rubber covered ones.

    Went on to Walla Walla but got stopped at an accident. Only our lane was blocked but the police let the opposite direction go through but we set there for 30 minutes, which made us late. Thankfully the VA is use to people being late due to accidents since Vets come from Oregon and Washington. Got is his new machine but is an APAP instead of CPAP. Nice because I can take the water part off so only the air part is left. Plus it sends readings back to the VA so if something goes wrong they know.

    Toured the new Vets home -wow is it nice. The rooms have a hospital bed, an easy chair, a desk and chair, a dresser with TV on top, a wardrobe, bulletin board with cork, a big bathroom with sink and a counter, toilet, a big walk-in shower. They are all set up for people who need up with the lift on the ceiling that goes from the bed to the toilet or shower. Beautiful nice garden area in the middle (set up as an 'H' with 4 pods on each half. The backside of the building faces the nearby school so if they want they can sit out and watch the soccer games. In the center part is the offices where the activity and pt rooms are. They have a VA doctor on staff as well as a speech therapist. Oh, each cottage has their own kitchen where they can watch the cooks fix their meals. Saw a sample menu and they are simple foods more like we ate including his favorite PB & J. They moved the first resident into the memory care today - a woman. They have had trouble finding CNA's experienced in Memory Care. Unfortunately he is way down on the list. I would willingly move to Walla Walla if it meant getting him in there.

    Arrived back to the facility, set up his machine then went to talk to the person handing out meds. According to the records he was given 22 amoxicillin already. Strange since there were only 21 to begin with and there were 7 left this morning. I went and talked with the second in command person about how the day started and the problem with the pills. Told her someone is falsifying records and she needs to find out who. She said maybe there were more than 21 pills. ( called to confirm with pharmacy only 21) He went to day care 3 days and only got two those days, so total taken after this morning adds up to 17. If they are not there for the dosage, it is skipped even though he arrives back 1 hour after the 2:00 pm dosage. This was her message (I was driving): After his afternoon pill there were 4 left. She still needs to find out who falsified the records.

    I am so tired of all this. The days I go are so stressful. There are days I am ready to bring him home. Hopefully he will use his APAP so he gets a better night sleep. He looked so tired today..
    • CommentAuthorpaulc
    • CommentTimeOct 25th 2018
     
    They put Leannah on Zyprexa yesterday, 2.5mg twice a day. I hope this helps. Zyprexa is on list of antipsychotics that are approved for FTD patients (many aren't).

    One of her sisters has been busy investigating. One problem is that the Director of the ALF (there is a director above her for the entire facility) does not seem to have any dementia experience, definitely no FTD experience, and might be new to administration. She has been there for only a few months. And she is not familiar with Leannah. Before we had people at top who have know Leannah for years.

    I am sure that the family of the person Leannah attacked at making a stink, I don't blame them. But this is the best facility for her. It has staff familiar with FTD. They deal with he most difficult cases. Anywhere else would have sent her to the psych ward on a number of occasions.

    Charlotte, this sounds bad. I would go ahead and contact the ombudsman. After talking with them considering reporting the facility to state regulators. Even Virginia, which is a pro-facility state (they put the facility rights above resident rights) looks down on any improper medication handling.
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      CommentAuthormary75*
    • CommentTimeOct 25th 2018
     
    This brings back bad memories. Once I found twenty-two pills on the counter in my husband’s bathroom at the care facility. When I asked the nurse about it, she said, “They must have been left there by the relief nurse on the weekend.” However, it continued, and I went up the ladder with my complaints. It continued. I moved my husband to another facility. No medication problems there, but there were other problems. It’s enough to make you weep.
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      CommentAuthorCharlotte
    • CommentTimeOct 25th 2018 edited
     
    Paul, I sure hope the medication change/addition helps her. So sad when on top of the person having to deal with the destruction these diseases do to them, to have to deal with threats of moving from the place they feel secure. Evidently the family, as frightening as the attack was, must not be aware these things happen despite numerous efforts to prevent them. And a psych ward.

    Yes I need to track down the social worker that he now has first. Then will contact the ombudsman. I have the contact info in the packet I came home.

    I just wish I could visit one time without something important to deal with. It has only been 5 weeks but I am sure they are getting tired of my complaining and/or being picky. Since they didn't have him clean and ready to go yesterday, this morning it hit me: what kind of condition is in he when he goes to day care? I need to call them and ask.
    • CommentAuthorpaulc
    • CommentTimeOct 25th 2018
     
    Charlotte, the ombudsman should be able to tell you if this is an isolated incident or a pattern. They should also tell you how well the facility responds to criticism. My wife's previous facility ignored almost everything the ombudsman reported. They were caught mishandling pills. Cutting pills with a knife, not a pill cutter. Using pills that fell on the ground. Not giving the proper pills.

    Don't feel shy about being a pain. I don't see you asking for anything unreasonable.
    • CommentAuthorpaulc
    • CommentTimeOct 25th 2018
     
    I got the name of the temporary neuropsychiatrist for the facility. Resume looks good and the NP likes him. Leannah will see him on Nov 3 during my visit so I can be available for the exam.
    •  
      CommentAuthorCharlotte
    • CommentTimeOct 25th 2018
     
    They moved him to a different room - in with another guy so he will have a roommate. There was a lady whose room was on the side opening into a non-fence area who kept trying to go out the window. Art's room opened into the fenced courtyard. If it is the woman I am thinking about, she is always pushing on the door until it opens escaping into the rest of the facility. I hope having a roommate will cheer him up some.

    I got to wondering so called day care to see what kind of condition he is in when showing up there. He shows up dressed and not dirty face or disheveled. She said they have noticed he is not his happy self like he use to be. He still socializes but not with the happy face he use to. I know when he left here the bus driver had a lot to do with his mood, how it would perk up. Not sure who his driver is now over there. I think I will go over tomorrow evening taking a couple melatonin with me with a can of root beer, then put him to bed.
    • CommentAuthorpaulc
    • CommentTimeOct 26th 2018
     
    A rescue group brought a mother dog and her 9 puppies into our office today. No work getting done for 2 hours. That is all.
    •  
      CommentAuthorCharlotte
    • CommentTimeOct 26th 2018
     
    Doesn't sound like you were too upset no work got done for 2 hours. I think that is special. At the Veterans Home the guy told me the local pet shelter brings cat/kitten and dog/puppies in every week for all the residents to love up on. There are the 2 memory care which has only one resident, but there are 8 other cottages.
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      CommentAuthorCharlotte
    • CommentTimeOct 26th 2018
     
    His roommate is lower functioning than him. He wears diapers so the room smells some of urine. I went tonight - took him a root beer and 2 melatonin. Tucked him into bed at 8. They have not found his other pillow (he had 2) but the one he had was not his. It was a 'my pillow' -his roommate had his. He also had the TV remote by his bed - the TV is out in the big room. I looked at his shampoo and bar soap - neither has been used so not sure what stuff they are using on him. When I arrived at 6:45 everyone was in bed except for Art and his roommate. I think his roommate is one that is up wandering much of the night. I hope he doesn't keep or wake up Art during the night.Won't work with me if he does. Guess I am too picky