Since in a couple of days it will be July 4, or Independence Day, I'd like to suggest a theme for this month—Independence Day for caregivers. Maybe we can't do it on the official Independence Day, but maybe another day this month, whenever it's convenient for each person. I think caregivers need to have a Day of Independence at least once a year, when they only have to think about themselves—a day to have some fun, or spend some time thinking about what their own needs and wants are. This seems like a good month to do that. Any ideas on how to celebrate our own Independence Day?
My daughter was off yesterday so I didn't have her boys. I took MY boy to her house and I went for a workout at the YMCA, had a 1 1/2 hour massage, a haircut and swung by DQ and got myself my favorite kind of blizzard...cherry chocolate love with extra stuff in it. I even stopped by a store just to walk around and shop. I declared to everyone that it was "me" day. So, perhaps it was actually my independence day!
I am in for an Independence Day for cargivers. Now to figure out how to get it. After last night with the roaming I need a day of sleep on the beach with a cold drink.
So much for Independence Day. We had a semi severe thunderstorm about 7 o'clock last evening. An hour after it was over the power went out, right in the middle of changing diapers to get Ron ready for bed. Good thing the hospital bed was flat to change him of he would have had to sleep sitting up. Power came on again at 12:30 noon today. Last night I couldn't get the gas grill to work (maybe a spider in the gas line?) to cook a pork roast on the rotissary. Threw it in the fridge and made hamburgers. This AM no power so I get out the camping Coleman stove. I couldn't get that to pump up. Yesterday I charged up the big marine batteries that power DD's C-Pap machine. When I reconnected it, I put the cables on the wrong terminals and zapped the inverter that changes the power to ac current. If anything could go wrong, it did. Murpheys Law. When I went to give Ron breakfast I told him all my problems and ended with saying I'd kill for a cup of coffee. My totally non verbal husband just broke out laughing.
Oh Mary, I was really stressing with you until I read your husband's reaction. I had to laugh too. I hope you were able to - laughter will release some of the stress.
No coffee? No coffee? I can't imagine it. No. It's too horrible. It could be that hurricane making it's way up your east coast. Should stay offshore until Cap Cod and Nova Scotia but it could be causing some power outages.
Happy Independence Day and congratulations on kicking the Brits out and throwing the tea away. Of course George was mad as a hatter and had the French revolution to deal with and it's so unusual for the British to feel they're superior and everyone else everywhere is inferior.
I also admire George Washington and his wooden teeth who turned down the opportunity to become king which had strong support at the time. I believe that is the first time in recorded history where a throne was offered and turned down. It was the same in WW2 where the United States could easily have moved in and taken over whatever territory they wanted. No one could have come close to stopping them. Instead they supplied even the Russians while fighting vast wars on two fronts and winning them both and then going home helping europe on it's feet through the Marshall plan and giving Japanese women their first taste of equality in the constitution.
That's all history not politics. The declaraton of independence is simply the finest document human beings have produced so far anywhere. Happy Birthday to the United States of America. Our nutbar neighbours to the south. Just kidding.
Just came in after spending the last hour+ watching fireworks. Where we are we could sit out behind our motorhome and have a 180 view of the valley. We could see the Kennewick and Pasco pro fireworks but the ones people were shooting off themselves I think were better.
Bent over today instead of kneeling - who knew it could make a big difference but I felt the stitches pull. Luckily no sign of bleeding so guess other than the pain I now have no damage. I now know why he told me no heavy lifting yet, at least not until I go back the end of August.
July 5th and Socks - my outside cat - is ever so grateful as she spent the night huddled under the car in the garage getting away from the bang bangs! thankful that it was an unusually cool night in July otherwise it would have been like an oven. Poor animals don't appreciate celebrating at all!
July 3 would have been 5th anniversary. Hard to believe the relationship I enter into just a few short months after Dw's passing has proven to be so fantastic. The fates do reward the years of sacrifices
I spent yesterday up north at a cottage on a lake. My best friend and his family invited me and this year felt different where last year I forced myself to go and this year I was larely open to going. I notice stuff like that because it helps keep me grounded as to whether I'm becoming more normal about life - or in my case the familiar kind of crazy.
There are comings and goings and the tradition of playing some games together after the dinner where my 'niece' who I've known since a baby said a heartfelt prayer for the well being of her uncle Wolf as we all held hands together. I've never been in a Norman Rockwell painting before but I can both see and feel the new growth sprouting through the ashes. Even as I lose the support of some, I gain the support of others. And for me the thing I'm trying to relearn is to open to that and risk it being hurt or losing it.
I do not admit openly to myself that risking being hurt is my greatest fear. Instead I have cornered it logically but when I look away that thought is gone. Just as the athelete is motivated not by the fear of failure but the desire for success, it makes sense that when I have great fears my mind works with that for me.
I came back into my controlled world and for a while I felt that closing in feeling when we have a break where some of ourselves peeks out and then we have to return. In my spot on this journey I have to be focusing on a life for one I can be ok in. Going to see my wife doesn't take up much of the week and I've been home long enough to have some time to become accustomed and to integrate what has happened and what it means.
I have come to see that for me it means that my genuine response to dementia is a shrug because my feelings for Dianne are largely that she be spared suffering when it's her time where our time 'together' ended almost four years ago with the level of loss of coherence, awareness, and speech. That's what's actually happening.
I have also come to learn that moving forward is not in terms of her or us, but in terms of me being me. I also notice that as I feel better my memories are better. I remember something involving six of us laughing where the integrity plays out. In other words I've decided the good times together were good before they became social lepers and in the memory it plays out that way when I happen to remember something involving them.
I also notice there are very, very few people who have an exact end state in mind. Very few know exactly what they want and are like pigs rolling in the mud when they have it. Instead most people I know have things bothering them, have worries and concerns and even fears, aren't happy with certain things in their life, and carry more than enough baggage. I may be closing in on normal.
I have finally cut the last tie with the west side of the state. I stopped by the VA today to transfer his care from Portland VA system to Spokane VA system. They said I should hear within 3 days about an appointment. I have enough galantamine for 3 months. Zoloft only I think a month so that will have to get renewed.
I decided to do the switch now instead of procrastinating. Since I will have to be on 5 year watch due to the cancer and I like my doctor here, we definitely will be staying her. Guess one can say the cancer forced me to make the final decision.
Now I need to stop procrastinating and decide whether to spend another winter in the RV or move into an apartment - then to find one we can afford.
I was going swimming tonight - more like water exercise - and asked hb if he wanted to go. He said no, then asked me why he would be afraid of the water. My heart wanted to cry knowing we have reached another 'milestone'. I told him that it is common with Alzheimer's to be afraid of water. He went with me after that. I went swimming Thursday and over did it being sore all yesterday and today. But, I decided to see if I went if it would help the soreness and it seemed to work.
Suppose to be a bigger than normal moon tonight but it looks like a normal full moon.
I didn't notice that it seemed any bigger either Charlotte when I took a look. I also think the swimming is an easier way to get exercise while straining as little as possible because of the boyancy where the denser water offsets gravity to some degree.
I like Pilates....I have a bench that I work out on....when I remember....I like the gentle stretching and even if I don't do it for a bit I don't have sore muscles.
Charlotte - good to hear you're doing so well. How big is your RV? There's a new show coming on about living in small places and the different tiny homes people are building. I always thought I would like to be a snow bird...living six months in a RV down in a warm state over the winter and then six months back up here. Maybe when I stop working I can.
Have a 34 ft motorhome with slides. When Art dies if I am able I want to go be a snowbird. We did it one winter and was nice to be warmer although in Yuma we did have some nights that were below freezing but the days warmed up quickly to the 60s.
We waited far too long to buy our motorhome. He had been wanting a Roadtrek for years but I fought him on it. In 2009 I finally agreed because he had to use a catheter all the time and there are no clean restrooms on the road between here and Florida. A Roadtrek is a Class B motorhome, built on a Chevy Express van. 19 feet long. It will sleep 3 but you can't get out of your own way.
Got it in October, and went to CT and NH in November, I did all the driving. After we got it I realized he could never drive it. In January we drove to Florida taking our time and visiting with friends along the way. Our destination was Bradenton to stay with a friend for a week. We arrived on a Thursday, and Friday AM I got an email that we had a space on a cruise the next week. We had been on a wait list for a month. Spent Friday setting it up.
At 3 AM Saturday Ron decided he wanted to go home. He had the keys to the vehicle and said he was going with me or without me. He couldn't have found his way out of Bradenton but I didn't want him to have an accident. So off we went. Cancelled the cruise but in addition to the cost of the cancellation insurance they charged a penalty because it was within 5 days.
The following summer we did some close to home RV parks but he would never stay more than 2 nights and wanted to go home at the crack of dawn. The next March I took it to the dealer we bought it from and had them sell it. That was an expensive RV. We got $30,000 less than we paid for it. Should never have let him talk me into it.
I forged ahead and sold our pick-up and Lance camper last summer. But, history is constantly being reconstructed around here, and I continue to take heat for selling the camper when he didn't want to sell it. Of course I had his agreement, and his signature on the papers, and we had agreed after our last trip three years ago that our camping days were probably over. Reality vs wishful thinking. I do miss it. We had some wonderful times. Mary, I identify with your travel story in other ways also!
34 ft is a great size because you can drive it the world is your oyster once hubby is settled. Just think of all the adventures you can have. These are things I'm now thinking of.....maybe a road trip down to you neck of the woods I have another friend that lives down there on the Olympic peninsula. Have to put it on my bucket list but first Mary in Vancouver....next trip down there I'm hoping.
I'm camping all the time now meaning I live in a cabin by a lake in the wilderness....I won't give up my soft bed or my wood stove for anything. When I got off work today my granddaughter was waiting for me with my swimsuit in her hand for me to change and down to the lake for an good swim. Last night we were in till 10 in the evening....what a good life it is now slowly turning into.....baby steps.
Amber - you always talk about your cabin in the woods and would love to see it someday. I love Canada. When we lived in Seattle we use to drive up to watch the Seattle jr hockey team play the team in I think it was New Westminster. We even made it to a couple Canuck games. I even have the 45 record with the team song from in the 70s. When we lived in Omak we use to drive up into the Okanogan Valley. There was water slides south of Penticton I think that we use to take the kids up to.
When I sold our 5th wheel it was very emotional because I had finally admitted to myself what others had seen for some time my dh was sinking into his own world. He didn't object much when it was gone. He had realized that he couldn't back it up - so I used that as one reason to sell and he went along with it. We had been campers since the mid 70's starting with a slide-in pickup camper and ending with a 27 ft. 5th wheel with one slide-out. Dh never liked pulling anything larger with our Ford 150 pickup. We camped lots in state parks, TVA campgrounds and Nat'l forests. After retirement we took several months long trips although we never considered full time we really enjoyed traveling and camping was our way. I especially liked having my own bathroom and eating my own food. Great memories.
Today I removed the area rug in the living room, because when DH shuffles and doesn't lift his feet, he trips over the edge of the rug. For some reason, having to remove this rug has really bothered me (I got rid of the one in the dining room a few months ago for the same reason). I remember that when we purchased the rugs, my parents thought that we were crazy to spend so much money on them, but we have had them for 36 of the 38 years we have been married, in 8 of the 9 houses we have lived in, kept several pets and raised a family and the rugs are still in good shape. I feel like taking the rugs away marks the end of an era in our time together. Almost like the rugs represent stability in a world full of chaos, and there is nothing stable in our life anymore, just more changes to come. Or perhaps its just one more act toward acknowledging the inevitable, and that its why I find it so frightening.
(((bdq))) Those are hugs for you, bdq. Our familiar, long-term possessions hold many memories sometimes, and are part of what makes our home a home. There is something anchoring about a rug--I totally get what you are saying about stability in a chaotic world. DH was kicking up the area rug under our bed so much that I knew it had to come up. But then came the big dramatic deterioration on April 14, and he's been non-ambulatory ever since, so it's no longer an issue. My son-in-law and I put the rug under the hospital bed when DH came home to Hospice, so when we do get him up, he has something softer than the hardwood floor to put his feet on. It's a red "Persian" style rug that we bought together 17 years ago--but he specifically chose the red-- and it's always been under our bed. It kind of comforts me that he still has that red rug under his bed, even though it's no longer under our queen-size bed.
I knew that I could post here about my rugs and there would be understanding - thanks everyone! It struck me yesterday that part of the reason I feel the loss of the rug so much is that without it the living room seems to have lost all its warmth and homey feeling. I think you are right, elizabeth, it was anchoring. And without it, our living room has become more clinical, just like a waiting room at the doctor's office. And today I will be going out to purchase a pole for the bathroom, to give assistance for my DH in getting in and out of the bathtub - yet another medical appliance invading our home. I think I really resent our home becoming "institutionalized", particularly since I am still young and reasonably fit. Not something I signed on for, but something I resignedly have to accept as I continue to care for my DH at home.
bdq, your comment about your home becoming more "clinical" and "institutionalized" really hit home with me. After each hospitalization we added another piece of durable medical equipment - walkers, bath seats, commodes, bed rails, etc. We have some "equipment" , plus incontinent supplies in just about every room. I feel like I'm losing my home and have become less motivated to keep it clean and organized. Next we're facing installation of a stair chair and bathroom rails that are long over due. My sister visits and starts on me with all the equipment, etc. around the house. She doesn't get it. But for now, I still have my rugs.
Personally I think we should be issued bags of cheap, dark Rayban knockoffs and be allowed to put them on anyone we want.
When they ask what we're doing tell them it's a metaphor. In fact, say "Metaphors be with you" because it will confuse them that it's a star wars thing.
Lots of wild fires in BC around 250 and some big ones here and across the line in Washington. The smoke has been really bad the last 5 days. I was out walking in town yesterday and when I came in and closed my eyes they were burning and my throat felt raw. We are suppose to get rain today and it does feel cooler.....up in the 30's C and on my porch it was 50+C the last several days. Without the smoke it would be beautiful summer weather.....I sure hope there aren't any thunder storms and no fires start where I am.
Do you have air conditioning, Amber? I know you said you live in a cabin, so maybe that was a dumb question. I was thinking you could turn on the air conditioner and close the doors and windows. Being next to the lake sounds nice--I imagine you can cool off whenever you want.
Amber, I hope you get the rain you need - living in the woods can be scary in fire season. Our skies were hazy today, and I wondered if there was a fire somewhere to the northwest of us. We sometimes get smoke from several hundred miles away. So far this summer our area has had more problems with flooding than fires. Even though we are on a lake, we are high enough up a hill that flooding is not something I need to worry about, but there have been washouts on several roads in the area over the last couple of weeks.
No I don't have air conditioning and up here I don't need it. Same with my car there might be 3 days out of the whole year I would use it. I'm at 3800 ft above sea level and at night it usually cools down to 12C so open everything up a night and it's all cool and in the morning close it up and with a Panabold building and surrounded by trees it's keeps the cabin cool all day. In winter when you heat with a wood stove the wood walls and logs get warm and keeps the cabin warm on cold days. Yes I go for lots of swims but you can't stay in the lake a long time or be in the shallows....lake itch....I got a good dose of it when I replaced the walkway to the warf and I had to wade in the shallows. I'm still itching 5 days later.
Bonnie - looking at the weather report we are getting hot weather while back east you're getting cold weather. Sure hope it warms up and dries up for you guys.
Hb's brother just shocked me and called. I said his name when I read the caller ID but fortunately HB did not catch it. I tool the phone into the bedroom to talk. He wanted me to know that hospice had called in some tray which I guess is for the end, so they expect their sister to pass any time now. I have not nor will I tell Art - or at least not planning to. I already knew from chatting with his niece but it was nice and a shock to have him call me.
To refresh, his sister has EOAD diagnosed in 2005. She was in the psych ward for 6 months while they tried to find a cocktail to calm her down. She was nasty, mean and out of control. They never could. Then the first part of June she calmed down and became mostly bedridden unable to do anything for herself. I can't remember who it was that had his wife sort of like this, but because of that I know this scenario is not unusual.
Finally - an offer on my house - and after several counters, I accepted! Closing 9/4 - and I'll be heading further South. Thought this would never happen. Been on the market 5 months. The neat thing is the couple buying it - his great-grandmother's family built this house around 1900 and it stayed in the family until 1989, when an uncle sold it to the people we bought it from in 1993. He has spent a lot of hours in his early years here! At the showing 15 family members came and they stayed 3 hours! They are happy, I'm happy - except I love this house and hate to leave it, but we do what we have to do to move on. Don't we all know this too well!
I know there are several others here who are in the process of selling their homes. I send you positive thoughts and prayers that it will sell quickly!
I had been wondering how the house sale was going. Bitter-sweet story, Vickie. It's hard to give up a home you've loved. Now to move forward to a new adventure. Our prayers and best wishes go with you. Love from Mary
Vickie, So glad to hear you finally sold your house, and what a wonderful outcome that it should be returned to the original family. I know you are anxious to get going, but 9/4 isn't too bad. Does your sister live in Florida, and are you moving to an apartment or another house? Good luck with the closing.
My niece and her two grown up girls came by from Victoria to visit Dianne. I never heard from them and found out from the lady who helps watch Dianne for me at the NH. My SIL came in June and had the whole family together for a huge dinner out but I didn't exist either for the dinner or a phone call while they passed by the house to visit Dianne. I'm positively glowing in the warmth of family support and you can be sure that society approves of this sort of treatment of Alzheimer's spouses. You can find that out very quickly when you complain and see their faces looking at the alien making strange noises.
Avoiding Alzheimr's literally has nothing to do with me. My nephew who lost his grip months ago because I didn't sound supportive enough on a phone call about his own parents' health had actually always turned to me to really talk. We were very close before I showed I was weak and too needy. Who want's to see the uncle you thought was cool hiding in a closet for months? I suppose all that comes into play but I happen to know that the minute I put her into a home was the minute all support disappeared from her family where my family has consistently been invisible from day one. It took my sister well over a year of calling to talk to her brother and then turning speechless on the phone because I mentioned nursing home/alzheimer's and she had managed to forget once again that such a thing was happening. My sister made it through finally and now talks about it and doesn't forget. I told her she should be proud of that because most people can't do it.
The bottom line is that Dianne's family was always strange in my mind and once I get through the hurt of again having people I felt I was close to shutting me out because of the disease, I suspect they'll end up like my x-friends who also shut us out where the ashes of that feels largely emptied of reaction and gets a shake of the head. What people do for convenience amazes me.
Dianne isn't going to be able to hold out that much longer. She's been amazing but there are limits that are clearly creeping in and when she gets her release, she will also release me from connection to her family which has lost much of it's appeal. Rack another loss up to Alzheimer's. I'm ahead though. I've made two new friends this year which is a blossoming thing. I've gotten miles closer to my best friend who is more like a brother now. My sister and I have both worked to get closer and we have. And I still have some of my friends from my former life standing where I've become normal enough to know I want them more or less.
We all follow our own roads. On mine I saw one day that even though all these things hurt greatly, choosing to guide my future by my feelings about the past was taking ownership that the disease defined my life even when it was over. And it is over. We just have to get the shreds left of her through until Alzheimer's finally finishes this chapter.
In my opinion it takes courage for anyone to find their way and it certainly takes courage to find a new life in our later years after experiences as powerfully bad as this one is. That's why Groundhog Day is a deeply spiritual film that is used as part of the ciriculum of numerous faith schools. At first he tries to find a cause and solution to get out of it by killing the groundhog. Then he tries to kill himself every way he can think of. But he's stuck and realizes he can do anything he wants and goes through the motions but a true person like Rita sees through it and so he finally faces that to get what he values in life he has to earn it and once he believes that he becomes the thing he values in her and bob's your uncle.
That's what I believe too. I could buy the Porsche and lean on it and I'd get all kinds of dates but you get what you pay for and what a lot of the carboard crew with money don't know is that a Porsche has a suspension like a tank and while there's nothing wrong with using money to go out with girls young enough to be my granddaughter, you'd have to know the odds of anything not shallow coming out of that are slim to none.
No, I'm pretty sure I read the brochure right. If I want to find a future I can believe in I have to earn it without really understanding what that means. It means I lay in wait ready to throw into people's faces how inadequate they were. Yah, that doesn't sound that great. I believe in the righteousness of the offences and sharpen them like Gollom and his ring over the years. Again, doesn't sound that great. I'm on a planet with whackos who do every stunning which thing imaginable but it's really, really hard to grasp that applies to me too. There. Now that's a car you can drive anywhere.
Moon, I am renting an apartment in a senior complex about 15 min. from my sister. Going from an 8 room house to a 1 or 2 BR apartment will be a challenge, and certainly a change, for me. We move on.
Wolf, we will never understand human nature and how people react to our 'news' when it is about this awful disease. It hurts - I know. We will survive this - and do well in the process.
"If I want to find a future…I have to earn it…" Hmmm, I think I like that one. I'll ponder on it some more while I'm cleaning up poop and whatever. And I don't think most people go out on dates based on what kind of car a person drives…although there was this really sharp Corvette in the parking lot…no, just kidding. : D
Vickie, so happy to hear your move is progressing now. its going to take some getting used to but you have made a good decision for your needs now. take care. my best to you in your new apt! divvi
Thanks, divvi, good to hear from you! I know you are still in the trenches and plodding on. I will still keep up with Joan's site and all the wonderful people here who have helped me so very much. What would we do without each other!