This article from today's NY Times reporting on some enlightened methods of care for AD patients and on stress reduction for caregivers was encouraging, I thought.
Just saw the AD float in the parade - it won the President's trophy. It was beautiful and hope it gets peoples attention for not just its beauty but the message.
Nancy - boondocking is parking somewhere without any hookups: electric, sewer, water. You basically are camping with a little more convenience than tent camping since we have our frig and furnace that run off propane and batteries, we can use an inverter to plug in electrically things like TV, computer, etc. We have a generator to fire up to recharge the batteries (some have solar panels which I wish we had). We have secured a spot in an RV park (very surprising) so we won't be doing the whole experience but I am fine with that.
Every January there the 'Quartzsite Sports, Vacation and RV Show' - there is a big main event tent and hundreds of vendors set up wherever they can get in. In the past it was said 100,000 RVs would show up but the city has tried to tax vendors to death so they have decreased and so have the RVers. But, they still say over 50,000 show with a large portion boondocking on BLM land. Quartzsite itself is known to Rock and Gem addicts which there is the Rock and Gem events going on all winter and the area has many places out in the desert that draw those that want to search for their own to the area. The town itself has a population of around 3500 which increases dramatically during the winter.
We have heard about it for years, dreamed about it as many, many other RVers have so figure we better do it now cause there might not be another chance. We love flea markets and this is like going to a very huge one. Fortunately because we live in a MH we have to be choosy about what we buy but it is still fun to look for that '1' treasure - something you can't live without. We drove up there a couple weeks ago and found a little flashlight with a laser light. That is about the only exercise our cat now gets - chasing the laser light around the room.
On another note - I am amazed at how well Art remembers how to get to places here in Yuma. So maybe traveling, for him, is good cause he is required to use his brain to remember where we are.
Just came from seeing my wife in the hospital. She is doing better, but has a long way to go. It took 2 nurses to get her from the bed to a chair. She ate all her lunch, but with me feeding her most of it. Her doctor is discussing starting her on insulin, which I would prefer to avoid.
Happy New Year to everyone! My prayer is that we all have the strength, physical and mental, to get through whatever AD throws at us in the next year.
Amen to that marsh!!!! Our New Year started out with DH taking off his Depends and peeing all over the bedding and mattress/box spring. Happy New Year!
Happy New Year! Amazing how much can change in a year. Last New Year's Day I went into work for a few hours and could leave my husand alone. This year, it's fecal incontinence and late stage 6.
Phranque-Paper plates are my best friend..
and phil4:13...and of course the the Depends (when they stay on!)
Happy New Year! Well it came in with a bang! The morning went fine, but in the afternoon DH got upset because we weren’t going anyplace. He thinks we should be going places & doing things all the time. Then he thought that someone was coming to visit & when I told him no he REALLY got upset. Called me names, blamed me for everything etc. I kept my cool & didn’t argue with him. After a while he became very remorseful & told me he was sorry & that I didn’t deserve to be treated like that, & that he was just going to leave & never come back. Of course he didn’t leave, but it took me a few minutes before I could tell him that it was OK. So, does that happen to any of you? You get verbally abused by your LO & then shortly after, you know that you have to forgive them, but it gets harder all the time. How do you handle it?
To my friends that I am honored to have in my life. May the 2011, warm your soul, bring love to your heart and bless you with everything good that this life has to offer.
Marsh, I am keeping your wife and you in my prayers. Keep us posted. Arms around, S
marsh, if your doctors do say your DW needs to go on insulin, check with them about Victoza. My DH is on insulin and was to check his glucose 4 times a day and take insulin before breakfast, before lunch, before dinner and before bed and this was all on a sliding scale and it was so much math and finger sticks. I said at one visit there had to be an easier way to do this. So while Victoza is not insulin it does have a feature of keeping the sugars level and he does the insulin twice a day..lantus in the morning and evening. It is a long acting insulin. I was at my wits end with this. It seems to be keeping his sugars pretty well grouped and level..no problems and we have been doing this about a year now.
Yeah, yeah...pretty good end-of-year holidays. Kids home, lots of family stuff. Jeff's ok. Kind of in the chair-potato doldrums--can't do much anymore, but never declining in any notable way. I think this is the rest of my life forever and ever and ever and ever and....
Well, anyway, I just wish I had a good guy to talk to. A lot.
Yes, Charlotte, thank you. It was wonderful to get away on my own, travelling with my two baby granddaughters (and their parents). Miraculously we had no trouble with weather, road congestion, airport congestions, all of which about drove me frantic with stress ahead of time. But once I stepped onto the plane with them the stress fell away and I had a great time. We stayed first a few days with my Mom who will be 90 in September, so this will probably be the last time she will be able to host visitors at Christmas (in spite of the fact that I did most of the cooking etc) and certainly the last time we are going to do a turkey with stuffing and all the trimmings. That was really hard on her, not so much getting that turkey in the oven early on Christmas morning (I did most of that), but especially dealing with the carcas afterwards. She just feels she can't waste a scrap of that meat and we were all ready om the 27th to go off to the Lakeside house that we rent, and she was still messing with turkey meat. At the lake house she is forced to relax since she\s not in charge of any of the meals and not allowed in the kitchen! Sounds harsh, but you need drastic measures to make her sit down and pay attention to her grandchildren and greatgrandchildren.
It was great to see my American son, DIL and grandchildren, hadn't seen them since May and had DH with me then.
Dh got along fine and I am now convinced it's time to place him, so have put him on the waiting list. We are going to proceed to the next stage while I still have the courage and energy to do it well. There is a waiting list so it could be any time from a month to four months. Another reason to get things moving now.
Hang in the Jeannette, the hardest part is making the decision and then the first time you have to drive away. You are making great choices. Glad to hear your holidays went well.
This is a copy of the e-mail I sent to family members and some close friends:
Here is the latest update on Marge - 6:00 PM, Jan. 2. She slept well last night. Ate all of her breakfast with help. When I got there she was sitting in a chair, doing her usual chattering, but the words were quite slurred. Her IV's and Foley Catheter were removed. Then the Physical Therapist and I took her for a walk. She takes very small steps and is a little unsteady. She did better feeding herself at lunch, with encouragement. During the time I came back to Parker Ridge for the brunch she said to the aide feeding her: "I wonder where my husband is. Maybe he's at lunch". In the afternoon she got up out of the chair on her own. I missed the cue and took her for a walk. I should have put her on the comode since she had a BM while we were walking. Fortunately, the nurse cleaned it up.
Tomorrow I will talk with discharge planning about getting her back on hospice. I think she will need another couple of days in the hospital before I can handle her. We tried getting her into bed, with the hospital bed at the height of the one at home, but she couldn't do it.
Jeanette - I remember just a year ago you would talk about your husband and it didn't seem he was that far along. But he has progressed right along. I am so happy to hear you had a great, fantastic, relaxing time. And maybe having that time away let you see it is ready to place him. Most have to make the decision when they are stressed and exhausted.
Marsh - good to hear she is recovering from the infections.
I look forward to a much better New Year. Just think how better eqauiped we are now than this time last year. I know that later stages will be difficult and painful but with my new PMA I think it slhould be easier. bill
Happy New Year to everyone on this wonderful site! I am much better equipped, adn billeld says above, because of this website. To read what all of you are going through helps me understand so much better what I will be going through in the future and how to handle it. That's been the biggest lesson I learned from this site - how to handle behaviors. I have learned so much about patience that I didn't in the beginning. I was freaked out about things I didn't understand. I am so much calmer now. Hopefully, this year will be a good one.
Jeanette - Your description of your husband's behavior and what has happened to him this past year makes me realize anything can happen and I should be ready for it sooner than later. My children want me to get help, but I really believe I'm handling things well right now. I do know where to get help in the future, though, when I need it.
Just caught up on reading this thread......Marsh, I am so sorry about Marge. I hope you can get Hospice soon.
Jeanette, I'm glad your trip went well, and hope that the waiting list is only a month and not four!
First I prayed for patience, and was rewarded with more than I had previously had. Then I prayed for the best way I could take care of my husband, and found a way that allowed me to keep my job (and insurance) and provide caregivers for him while I work. Then I prayed for flexibility - to go with the flow - not to require everyone to do things my way - just do them - and not to expect things to happen when you want them - whenever is okay - no rush. Dust bunnies under beds have become pets before leaving me on occasions. <grin>
And now, I am wondering how much longer.....he's four months old now.....He wouldn't want to live this way, and he needs to be at peace. Yet, when told I should tell him "it is okay to let go" I find I'm not ready to do that. And to stop his Razadyne and Namenda, and I'm thinking about it, but can't do that yet either. Still thinking and praying, and ending each day with "I love you" .
We all need to find our "moments" of happiness in the AD process. We need to take what we can get and make the most of it.
May each and every one of you find happiness this year; may our family at Joan's continue to be supportive, fun, and a place to vent, rant, and love.....
Mary, we each must make the decisions we are comfortable with and are ready to make. We made Living Wills years ago and I know what he wants so decisions are easier for me to make. I have given copies to my children so they will know my wishes on end of life decisions so they wont have to deal with these issues. I also told them if they tried to keep me living with machines or feeding tubes I would come back to haunt them. I feel pretty strong on this because I had a brother who was injured in an accident in his middle twenties and was in a coma for 7 years before he died.
Greetings - just found this website last week and got a private email address to participate.
We're in 3rd year of knowledge of this drat disease. For the first two used It's not Paul, it's the disease. Now added "count your blessings, name them one by one." This helps as the past year has been extremely lonely. We haven't been out for most of the past 3 years. Do get to a few restaurants where PJ is comfortable although Wendy's was not my choice for my birthday! <grin and bear it>
Thanks for the tip on extra bottles of vinegar. Switched to that for cleaning the bathroom floor. This year need to get rid of the carpet in sink area as it can't get cleaned and smell nice again.
Jeanette - I'm glad your trip went so well. I'll bet it really felt good to get away. I have friends in another state and would love to go there this winter, but there is no chance of that.
welcome nancyj. you have found a really decent group of folks who can help you along your journey. many are before you after you inbetween or have ended their journeys so there is just about every walk of AD here and good handson advice on any topic.
The new year has not brought the anticipation of good change that it has in years past. I'm sad, I'm just so damm sad. I just miss the way things used to be, way back when.................................my heart aches..
Susan L, I am so sorry about the saddness that you have. I am so sorry that things are the way they are for any of us. I can understand the heart ache for what use to be. That is not going to change but we need each other more this year than we did last year. Last year is gone but now we are faced with 2011 and everyone is a year closer and have no idea what this year is going to bring. Stay tuned... Phranque, I hope your paper plate is sturdy...
Deb...my paper plate is not very sturdy at all...but I throw it out often, and start fresh with a new one...got a lot on that plate, but at least I can toss it ,and find a new plate as often as possible.,.,
Just like the baby dinosaur said in that tv show some years ago..you know the one where all the characters were named after oil companies i.e. Earl Sinclair..and Sally Struthers was the voice or played the part of the teen girl...that one with the cranky ol granny dinosaur...and there was the baby...and his line always was
"GOTTA LOVE ME" well that is how it is with our Phranque and Marsh too//
I've had her company for three weeks, and now it will be back to just my husband and me. A new caregiver started yesterday. He seems to be doing fine. He's a nice older man and I think he'll be good for my husband.
A new year, but no new resolutions here...just the ones I made in September continuing......Diet, de-clutter the house, take care of myself, and watch over my husband. I'm still making plans for the future, even though there will be no date as yet...it keeps me going....
Just bought some new books for my Kindle, and I keep the WWF and Lexolous games going on my iPad with my spouse friends! It keeps me connected to a lot of you here!!! <grin>
I was never warned about Phranque when I first joined and I got him right away. I guess I needed his sense of humor at the time .Bev, I am with you" what would we do with him." He makes me laugh and I think we all need that! Speaking of which, phranque, have you really put your paper plates in the dishwasher? (that's funny!)
Well I did it. I took DH to the local Adult Day Care facility today for a tour. It’s not the most palatial place, but the PR lady talked it up. Then the nurse came in & sorta interviewed DH to see where he would fit in. My DH is always joking around so he was constantly trying to be funny. The ladies were very kind & mostly laughed at him. So we (I) actually filled out paperwork & all he needs to start going there is a TB test. At first I didn’t think he’d be interested in going there, but the more he interacted with the ladies & some of the staff that popped in, the more I think he decided that he might give it a try. Not sure if it will work out in the long run, but it’s worth a try.
Elaine-I never thought my husband would like day care, but he's fine. In fact, I added a sixth partial day. I couldn't keep working without it. Hope it works out for you.
Elaine, I never thought my husband would go to day care either. But he seems to enjoy going and he is one of the younger ones there. He has FTD and doesn't have a lot of the spatial difficulities that those with alzheimers may have, so he does help some of the other guys with some of the crafts they do. He does enjoy that. He goes three days a week and this is the only time I can get my errands done, visit my parents, etc.
I wonder if somewhere they get to see it or compare it to going to work? I know once Art gets around others he becomes alive. His old cheery, joking self comes out.
Tomorrow we leave Yuma and head to Quartzsite. I have us booked into a park there for a month. It is right near the interstate so am not sure how noisy it will be. Good thing once Art goes to sleep he hears nothing. He never heard all the fans going in the orchards for three nights in a row when it got cold. It sounded like a fleet of helicopters hoovering nearby - didn't keep me awake either.
Not sure if the park has wi-fi. If not I will try the Virgin Mobile broadband card I bought before leaving Vancouver. On the trip down it picked up everywhere but here in Yuma. But then my cell phone doesn't work well either cause we are too far out of town - too close to the Mexico border.
Charlotte--I think it is more common to compare it to school than work. When I first enrolled my husband, I was told that. And sure enough, later on he used to call the other clients "kids" -- actually, funny, they were usually people in their 70's/80's.