Hello everyone. I didn't see anyone else starting our November thread, so thought I would start it. How is everybody this morning? Mary75? I've been thinking about you after your surgery. And Rodstar? I've been thinking about your chronic pain issues--have not commented yet, because I was pondering. Have you been to a pain management specialist, a pain management clinic, anything like that?
Charlotte, have you finished cleaning the outside of the MH? I've been following your posts with a lot of interest.
Woke up to snow here. Still snowing. Winter is here! I've got lots of firewood for the winter so I'm comfy cozy by the wood stove in the cabin. Now to find a good book.
I have been to 5 or 6 pain specialist in 4 different states in 6 different medical facilities. Each gave it there best efforts. Shots-20, OCS stimulators, neck surgery, physical therapy-4, hyponotherapy, neurotomies-6, botox, acupuncture, biofeedback,and I forget rest. I have seen all kinds of specialtists; physiatrist, pain mgt, neuro surgeons, psychologist, psychiatrist and others. so, Over the years I learned more about medicine than I ever wanted to know. Maybe age is adding to the mix as I am suffering more. I have had at least 10 MRIs, CAT scans, xrays, nuclear scans, looked at all kinds of possible problems, no luck yet. I have not given up, it has only been 49 years Since original incident which was a wiplash type of injury.
Thanks Elizabeth for your interest in my situation. Seems that I over expressed myself. I an normally a guy who believes the glass is half full. However, as this AD has advanced I have just not looked at the glass. Guess I am in the middle of the positive/negative state. The professsionals say it is depression. I am truly glad for all the positive things in my life. I do look forward to life after HD and cancer.
Just the back and the cap over the windshield is left but I doubt I will get to it. The weather is turning cold and windy. Plus, my arms just don't have any strength left to polish (I tried today when I found a couple spots I missed wiping off).
Rod - I think most of us suffer depression to some degree - who wouldn't? Some can deal with it an overcome, others need some drug help. If I don't take my low dose I find I cry which I hate to do.
Rodstar, as I posted elsewhere, you are not over-expressing at all. And I agree with Charlotte--some situational depression is going to go with the territory. It sounds like a nightmare to me--to be taking care of a demented person while in chronic pain yourself.
Just jumped back on here to ask if you've (Rodstar) had any luck with a TENS unit? I know that science says they are not useful, but patients and some of the aides I know who have had them, swear by them.
elizabeth, thanks again for your consern. yes tens unit. In fact farr past it with surgically implanted occiptical nerve stimulator (OCS) and aother in the low back. I gave up on them and had them remoed in 2015 so I could have MRIs again.
Rodstar, I will add my vote that you aren't overexpressing yourself. I am sorry I didn't post something right away cause you put yourself out there and it had to feel vulnerable. I was heading out the door and couldn't get the tablet working right. I think it took us a little while to respond because, like elizabeth said, it sounds like a nightmare to be in so much pain for so many years AND care for a spouse with AD.
Have you tried medical marijuana? They can make a capsule with an oil that doesn't make you high. I tghink it is CBD. My.friend was totally against "weed" until her hip and knee pain got too bad. She tried this. They warned her it might take 4-5 days. Day.4 no change. Morning of day 5 she got out of bed a new person. But hers is joint pain. I have no idea if it would do anything about nerve pain. There are other mixes that can help with relaxation - eg to stop tensing against the pain. That has then THC but another friend who works for a med marijuana clinic says this is not the same stuff of the 60s and 70s. I don't remember if it is legal in your state. You are military. It would be difficult to think about trying it. Don't reject the thought out of hand.
I had a dinner party! I can't even imagine how this came about. I am such a loner. We never entertained except to have Jim's family for Thanksgiving once the Aunts were to old to host any more. There is a reunion for aircraft maintaners at March ARB today. My favorite crew chief from KC-10 Test Team days, 1981, called a few weeks ago to see if I knew about it. We've exchanged Christmas cards for decades. Now we live in the same general area, but have never gotten together. We had such a nice phone conversation and my other favorite crew chief was flying in. I decided not to go to the reunion for a variety of reasons, but fiund myself inviting the four of them to dinner. Free steaks - what crew chiefe could resist that?
I had everything ready to go. I barbecued the steaks and they came out perfect. Jim had fun too. These were his favorite crew chiefs too. One reason I agreed to date Jim was that my crew chiefs adored him. So much that if the coffee maker was broken they would cannibalize one from the other airplane to make sure he had cofee ready and hot when he got to the airplane. Fortunately Don is a talker with lots of fascinating stories. So no awkward silences.
And, since I got my dishwasher back in service, cleanup was a breeze.
It was fun. I had warned them about Jim's AD. Thought they might stay away cause of that, but it didn't phase them one bit. Jim had a problem in the bathroom just after dinner and I just excused us for a minute and got him cleaned up and changed and didn't seem to be a problem. And he chose last night to forget how to cut his steak with a knife and just ate it with his hands. Wouldn't let me help. Chris said that was the best way to do it.
And Chris's wife said she's been wanting to meet me for years and will stay in touch. WOW.
bhv, yep, tried the weed. My neurologist suggested it and provided the paperwork to get A State Licence. I tried really strong stuff, got a caugh, it didnot touch the pain and no buzz. Gave up on it.
These past few days has been a real trial with DW. She basically stopped eating and delusions has increased 30 fold. It has been a "fun" few days. If it doesn't change today, I will have her see a doctor Monday. I have no idea what has set this change in behavior off. She has lost ten lbs in past 2 weeks.
So glad you enjoyed your dinner party, bhv. The suppers we had here with friends were wonderful and, for me, life saving. Friends knew about the dementia and came anyway. My partner enjoyed the dinner conversation which flowed around her which without demanding any participation on her part. We continued them until she could no longer feed herself. I followed that with wine and cheese parties for a few months more. Figured that people did not come to watch me feed her no matter how wonderful they were. I followed that with wine and cheese parties for a few months more.
There are a lot of good hearted people out there who actually enjoy and feel good when they are able to reach out to others. They just sometimes need to be shown how they can help.
Your barbecued steaks sound so good my mouth is watering. Shall we have some at the lake cottage?
We will be celebrating our sixth wedding anniversary next week, and were remembering all the good people on this site that were there when we needed them the most. It has been a long time since, and we were wondering how you all are doing. We are now wintering in SE Indiana, and continue to spend summers in northern Michigan. Every day we are thankful for how lucky we are to be together.
Congratulations, TJ, and it's good to hear from you and Joyce! For newbies on the site, both TJ and Joyce are former AD Spouse caregivers who met on this site.
Just checking in briefly: post-op progress is slow, but headed in the right direction. I did get out for a short walk in the sunshine today and checked out the falling leaves. It felt so good! Glad to read everyone's posts and see how well you are all handling things.
Sometime I am still astonished at how fast my DW forgets things. You would exspect that I would come to think of her damaged memory as normal. But, I continue to be surprised. Is that normal? She foregets things in minutes. Also, new problem, the last week her appetite went to zero. In last two weeks she has lost over ten pounds. Is it AD, cancer, or something else? Wednesday, we see oncologist. Hard to watch.
No med or anything yet for the cancer. Maybe this Wenesday, November 8th we will find out treatment options. Today, when I brought up subjet of cancer, her responce was what cancer. Makes me wonder what should I do if they offer chemo or other treatments. Should I put her through that? what a delima!
Hi Rodstar, It is indeed a dilemma and I sympathize with you and your wife. She already has a terminal disease (Alzheimer's), for which there is no effective treatment, and now she has another one (angiosarcoma), for which there may be an effective treatment. But how effective is the treatment for disease #2? And how much pain or discomfort will that treatment cause? And what would be the point of it all? When you get more information on Wednesday, you may know the answers to these questions.
Hi myrtle, I have been thinking the same thing about treatment options for the cancer. Thanks for expressing those thoughts too. Unless something really unexpected comes along I will be hesitant to agree to any harsh treatments. This Oncologist did in our first appointment express his understanding of DWs total situation. I am guessing we will be on same page. I will be on a high non-emotional mental state for this meeting tomorrow. I will be by myself with her. Lubbock, Texas here we come again.
Rodstar43 My DH had elevated numbers on his PSA test. We went to see a specialist, and understanding where we were at. Told me the treatment could end up upsetting DH. And his inability to follow directions made everything harder for him and me. And as myrtle* said, they already have a terminal illness, AZ. So we opted to do nothing. Just managed the discomfort and pain at the end with Hospice. I know this is hard to do. Hope this helps.
blue brought up another good point - if you choose some treatment, how much of what is going on would she understand? How would she cope with the side effects chemo or radiation would cause? Hugs and prayers for you for the tough decisions ahead. I do hope you had discussed a situation like this before AD hit. That would make it much easier.
How we all know good plans can change. My knee is getting more painful so was going to try to get into the doctor but with the medicare deductible not yet met. The chiropractor evidently do not send billing until the first of the month so my two visits I paid for have not been deducted. Well, the day I was going to call for a doctor appointment a tooth broke. I got it fixed today - now I know why I don't go to dentist, took most of the SS I had left after Medicare premiums came out. Praise the Lord I have SS now. At least he said except for the broken tooth my teeth looked good except needing a cleaning. Last dental visit and cleaning was 8 years ago I think.
Made it through our first cold night - down to 20. Nothing froze but thankfully we are suppose to warm up to lows in the mid 30s after tonight.
He first mentioned a crown and I said that is out of the question. No argument on doing the big filling. Last tooth I had this done on was in the early 90s and still going good even though the dentist said it probably would not last more than 5 years. I just make sure I don't eat popcorn! Those kernels can be deadly to a tooth! Nice to see white in that spot. I know have one silver filling left. My goal is to get hb in to get that one rotten tooth pulled where the crown was. There is no root so it is just the tooth in the gum. I was impressed with this dentist - he called last night at 5:30 to make sure I was doing alright. He is the first dentist that got it ground down right the first try. Usually I have to go back for a high spot at least once if not twice.
Hb off to day care. Think I will put shoes on to go get hamburger for meatloaf and a maple persian!
I miss maple festivals and maple candy and real maple syrup. Lately it is priced like gold.
Oh my gosh. I am sweating here. Husband is cold. The weatherman just said Duluth, Mn is -1. Sounds like the first year I lived in MN. Snow before Halloween, weeks on end less than -60. Now that was seriously cold.
It is only 5:50 pm here on west coast. I had.already had enough of this day at 9am. Thankfully supoer is done. Don't know how I accomplished that without losing it, but I did. Just a few hours to go. And then start all over again.
A Persian is an oval-shaped, cinnamon-bun-like sweet roll with a sweet maple icing. Some stores use a sugar icing which is horrible. Winco uses a creamy smooth icing. Sometimes it will be sugary - found out when they get someone new and they don't cook the icing long enough to melt the icing to make it smooth. Another one is old fashioned covered with maple icing. Then come maple bars!
I agree - since changing the time the days seem to drag on all day long. It has hb confused some to especially when it is time to eat. At least getting him up in the mornings is easier!
Hi Vickie, Yes six years today. It's been six years of life that we thought we had lost eight years ago. Don't know how we would have made it through those times without you and others there to help us. I hope things are good for you.
Rodstar 43, my dh had prostate cancer and radiation treatment 5 years ago. Declared cancer free. When I asked our dr. here, if we should have his psa checked. He looked at me and said "why?". Just one more thing to worry about. If symptoms develop, we'll deal with them then. Decisions, decisions.
Lindylou, doesn't seem like I lived so many places. Grew up on Long Island/Great South Bay, NY. College at Brockport, NY near Rochester and across the lake from Toronto - one of my favorite places to visit. We knew the chief of police in Toronto from a vacation on Harbour Island, Bahamas. Masters degree in Mankato, MN. I had cousins in Minneapolis and St Paul. Like St Paul better. Then back on Long Island for a year. Air Force Officer Training School at Lackland AFB, TX. Maintenance Officer School Chanute AFB, IL (near Champaign, IL - really nice there). First.assignment to KC-10 Test Team at Barksdale, LA, near Shreveport. Sometimes we drove to Texas to shop. Happiness was Louisiana in the rear view mirror, although my job there was the greatest job ever. Then Riverside, CA,then Ontario, CA, then Whittier, CA, then back to the hills south of Riverside. Whittier was a.very interesting town. Settled by Quakers. My Grandfather was a Pennsylvania Quaker. I guess that is12 places altogether.
I'm still drawn to to this site and feel so close to all of you and I come here every day and read both sad and happy stories. However I feel like I should contribute something once in a while.
For the last five years I've been getting numerous mailings from different medical associations, requesting me to respond so they could give me some kind of a wellness check. When I don't respond, they follow up with telephone calls, telling me that I need to have a wellness check-up at least once a year to prevent some serious illness from creeping up on me, and their records show that I haven't had a check-up for five years.
I have a difficult time explaining my present situation to them. I tell them that I feel that I've lived a wonderful, happy life which ended five years ago when my dear Helen left me and at the age of 96, I'm ready for what comes next. So why should I worry about my wellness?
I'm not suicidal and still enjoy my family and friends, but feel that resources are being wasted in keeping me alive for no good reason.
I really like this little poem.... .... Don't know who wrote it
Lord, when you see my work is done. Let me not linger on, With failing powers, And weary hours A workless worker in a world of work, But with a word, Just bid me home, And I will gladly go, Yes gladly I will go
1. Who are these "medical associations" that are calling you? If it is not someone from your doctor's office (and it does not sound like it is) you should not be talking to them. Even if it were your own doctors, you would not owe them an explanation about anything. This sounds like a scam intended to take advantage of elderly people. Just hang up!
2. I like the poem, too. Unfortunately, life and death don't often work out that way, as all of us have seen with our spouses. For those of us who still have our wits about us (as you obviously do), I guess the question is what is the value of our lives if we are no longer actively contributing by way of work, practical help to others, etc. I do believe our lives have value but I can't always say what it is. (I'm sure Wolf, who is our resident philosopher will chime in here.) As far as "resources being wasted in keeping you alive," that is ridiculous. You are still doing good in the world. I still think of the story you told in "The Turkey Letters," not only because it was a good story but because it let me look through a window into the past and see how people lived then. Even though I am part of the "boomer" generation, I was greatly influenced by my grandparents, who were born in the 1880s. So it makes me happy to hear the thoughts and stories of those who have lived longer than I have and can connect me with the world of the people who gone but are still part of me. I hope you don't mind, but I'm going to post "The Turkey Letters" on a new thread and encourage others to post their own stories about the past.
Bhv, that sounds like all over the place to me. While I have lived in as many homes/apartments as you have lived in different places, they have been in the Worcester/Boston areas of Massachusetts or out in the Chicago area where I lived for ten or twelve years. But I do love to travel. Right now I am planning a trip to the west coast with my little camper. Really really want to see the Olympic National Park plus there is so much else to see out there. Whether it becomes a reality this summer or remains a “virtual reality” in my mind from all the research I am currently doing is yet to be determined.
Well if you come to Southern CA you could stay here. I have room for a camper and a pool. So many things are 1.5 hours away in all.directions. Beach, mountains, San Diego, Palm Springs, several Hot Spring places. We could have some fun. Or camp here as home base for a bit and wander on your own. I have a group of neighborhood ladies we could have a pot lock lunch with. You would like them.
I enjoyed your "Living In The Past" story. You certainly had an interesting story to tell and you know just how to tell it. You really suprised me with your posting that Turkey Letters story. I didn't know that anyone here except Wolf had ever visited my little web-site.
To answer your question about these Medical Associations who all wanted to give me a check-up ......... They were not related to my doctor or his association. I think they were just after some business that ObomiCare would pay for. I still remember when my Dear Helen was near the end. They were all fighting to provide care for her ........ which ObomaCare would pay for.
Art gets letters every few months that he still has his Medicare wellness checkup that he needs to do. They go in the garbage.
Love the poem George. Will have to safe it.
Haven't posted much lately mainly same ol same ol! He is loosing more ground. Forgets where his cereal is in the mornings. When he uses the hand towel he either hangs it up by his bath towel or in the kitchen with the kitchen towel. I noticed after his shower Saturday the bar of soap, instead of being put up in the holder higher on the wall, it is laying on the soap dish on the wall which I never use (wish I could remove it but have not been able to find the screws that hold it on). He still calls the cat a dog most of the time. I stopped correcting him. Reminder: never get two different animals the same colors!
I have been boycotting football but broke down yesterday and let him watch New England (I still boycotted). He can't follow the programs anymore and unless there are oldies on he just sits. At least in the hockey and football he gets involved and upset at bad calls!
It's raining. A little more than expected. I haven't finished clearing all the weeds from last year's rainy season. Oh well. Yesterday.was interesting. Grocery shopping. Lately a horror story. Hb likes to come and used to be somewhat helpful. Now doesnt realize things need to go from the cart to conveyer belt. I didn't realize how many things are going on at checkout. Dealing with that and supervising him is getting exhausting. At the commissary ( on base) people bag groceries for tips. We have our favorites. Yesterday was our very favorite. He gave me a big hug. He always wears a.cowboy hat and says God Bless. Nicest smile. Hb was so happy all.day. He is fascinated with the clouds. Last winter they scared him. Now he points and says he used to do that. Which is actually correct. He used to be one of the best flying under, over, around or through the clouds. The Kc-10 had color weather radar! It was one of many many modern things the pilots were excited about.
I remember a day in Louisiana when we had three 10s in the air. Storms. The 10 was capable of zero-zero autoland, but the air force wouldn't let them do that. I forget what the minimum visibility was. Hb landed, saying he found a hole in the cloud cover. The other two diverted to an airport several miles away. Hb called them wimps. We had to put our tow bar in a truck and drive over there to get them serviced and turned around. But they were right to divert. It was zero zero.
Hb also points at the bird and says he used to do that too. Also makes sense. They were very acrobatic yesterday. Someone has a.flock of pigeons and they are usually careening around his property or landing together on the wire. Hb said he loves them. We passed the Air Musem and he shouted, "There's my big boy". His C123 (flew in VietNam) is there, but I am not sure he knows which one. On the way hime we pass the National Cemetary. He says it is beautiful. Also very true. A few years ago when he was still.driving he didn't remember where to turn and would ask if he should turn there. I would ask if he was ready to go to the cemetary. He'd laugh and say not yet.
bhv ........... It sounds like you and Jim are still having fun. I love to read your stories.
.......Yesterday, I read a story in our LTC Newsletter. It was entitled "Secret to a Fulling Life". It told of a Harvard scientific study of 724 men over a period of 75 years. The study focused not only on their physical health, but their emotional well-being and happiness. .......I was amazed that this study confirmed my long time belief that a man's physical health or his environment has nothing to do with his happiness. I know from reading the posts here that we don't need any scientific study to give us this secret. All it takes is one true love.
................My Favorite Poem by Edwin Arlington Robinson. .............. It's a story about a guy who had everything except .............. the one thing that makes life worth living.
Whenever Richard Cory went downtown, We people on the pavement looked at him. He was a gentleman from sole to crown. Clean favored and imperially slim. And he was always quietly arrayed. And he was always human when he talked, But still he fluttered pulses when he said, "Good morning," and he glittered when he walked. And he was rich -- yes richer than a king, And admirably schooled in every grace. In fine, we thought that he was everything To make us wish that we were in his place. So on we toiled and waited for the light. And went without the meat, and cursed the bread. And Richard Cory, one calm summer night, Went home and put a bullet through his head.
Hi George, I hope you're well. I read your comments and remember you posting this before. Glitter does not feed the soul.
The world is full of massive yachts and private jets with the necessary support cast on the payroll, and many of them sit empty the majority of the time because...well, your poem said it better. It's almost never what we have. It's almost always what we believe.
One of my teenage epiphanies was that the lyrics to Simon and Garfunkel's song, "Richard Cory," was actually written long before in 1897 by Edwin Arlington Robinson as the poem, "Richard Cory."
Life is cyclical, I realized, because the new voices and song messages were actually repeating something about 60 years old, a story line probably told by Shakespeare and Homer. Perceptions are the sleight of hand that we deal with on a daily basis. Listening to and reading the story of Richard Cory was the apple that got me booted out of the Garden.
He did it again - broke the bow on his new glasses. Took him about 6 weeks. He tried to blame it on the kitten but yesterday I yelled at him for trying to bend it. He was back in the bedroom when he came out to show me it was broke so I am thinking he either did it before he went back there and I didn't see it or did it back there. Can't find the broken off piece - was going to try and glue it back on. Now he has no glasses to wear. A part of me doesn't feel sorry for him but I also know what it is like not to see clearly.
Charlotte, If you wanted to create a scenario that symbolized the frusration of the Azheimer's caregiving experience, this would be it. You just can't win.