I hear you bludaze. I am alone w/my husband so much of the time. Last weekend and this weekend my daughter and her family are away/Her house is about the only place I bring him. That means I'm stuck. Youngest daughter will be in and out working and on with her life. No g-kids around this weekend. I'll be spending a lot of time on the computer lol. I did manage to get out the last 2 days for about 90 min each day so that helps. It looks like I will be able to get away mon night and Tues night too. Looking forward to a couple of days at the beach. I hate to spend the money on hubby's care because I will need every penny when I go back to work and need someone for him full time. However, if I don't get away I am going to go bonkers.
Believe it or not, the rest of the world is not all that "normal." They are having struggles having nothing to do with AD. I get calls all the time from friends who are in tough spots. It looks pretty on the outside, but if you look inside, they have their own issues.
For instance, I just got a call from a friend of 20+ years who is going through a divorce. Her husband had half a foot chopped off on a work site, he was in sales for a big machinery company. The result was verbal & physical abuse. He is now spending nights in jail, he assaulted 3 police officers. Felony, reduced to misdemeanor.
These are people I spent every Christmas and Thanksgiving with. It is heart breaking.
I know people who have spouses with cancer, etc. So, I guess my point is, don't envy the rest of the world. We all have our own personal hells to go through.
Yes, I am sure there are some people that have it all now, but what about tomorrow? Could any of have guessed this would happen to us/our spouses?
I read, keep in touch with those I love, am thankful for my health, enjoy my cat, explore my city, and continue my reading on spirituality. Who knows what the future will bring. I am the eternal optimist.
Frankly I'm not doing anything different in the evenings than I ever did before. Because of the cataracts (althought I didn't know I had them) I stopped driving at night a long time ago. And now I live in an area where there are no street lights on the main streets (but we have them in our community which makes no sense). So I may never get back to driving at night.
I was on the computer all night, or reading or watching TV, and that is still what I do.
Weekends? Well, for quite a while I was physically sick and a lot weaker than I am now. So I wasn't much up to doing much on the weekends anyway. I do ask myself what would I be doing if I wasn't his caregiver. And except for the fact that I'd do some travelling and going to things like needlework conferences, not all that much.
Val is right...there are so many things that can and do go wrong for people. I don't think there is a normal, but if there is, you can bet it's got its own set of problems.
Bluedaze, you must be having a hard night. Can't really remember you sounding like this. I had my meltdown yesterday. Tomorrow is another day. Get back to us. Love, light, hugs, Valerie
BTW, the friend whose husband had half a foot chopped of is living in a 6,000 sq. foot home. It all looks glamorous from the outside. She is a #1 salesperson in real estate, huge income, but is now going on Lexapro + other drugs. When we get to this age, well................ We all have histories. My single friends are unhappy because they're not married & my married friends aren't happy because they are married. I just have to be happy that I am alive & kicking. I meet friends for lunch. (Guess that will be over with my new job.) I think we are all lucky to be living on such a beautiful planet. i just try to find the beauty in everything.
...and did you see the article in the AARP magazine about the parents caring for adult children grievously wounded in Iraq? Makes boredom and sundowning seem trivial!
To go back to the original question - on Sunday we both go to the Adult Forum at our church which discusses a wide range of topics (next Sunday will be Economics and what we as Christians should do to make it more equitable). DW listens, but does not take part in the discussions. We then go to the worship service, followed by coffee hour. This gives me a chance to interact with others, and gives her some stimulation. The other times I get a chance to be with "normal" adults is at our weekly bible study and at Rotary meetings, both of which DW attends (due to her attendance at Rotary they decided to make her a member, thus giving me the privilege of paying 2 sets of dues).
With regard to the alcohol issue, we both have a glass of wine (both prefer red, specifically Shiraz) either before or with dinner, rarely both. DW usually has 3-4 cups of coffee (full strength) with dinner, and then sleeps like a log.
I prefer Cab/Sav. But whatever, I'll try the Shiraz. Are you feeling better bluedaze?
I think of all the people who are going through the housing crisis. They are losing their homes to the unethical mortgage lenders. Just think what they are going through. Yes, and the wounded from Iraq. I could go on & on. Saw a segment on CNN, a restaurant owner who had no health insurance for his family. (Or the workers in his restaurant.) He worries every day that nothing happens to his children. My parents lived in a different world. Pensions, job security, etc. I saw a segment on CNN where people who had previously high paying jobs, looking for months, praying they didn't have to flip burgers. I feel lucky just to have a job. This economy is hurting so many. Someone sent me an email today of all the stores closing, cash in you coupons fast. I have a gift certificate for Home Depot, on the list, and I'll find something to buy next week.
I guess tonight I showed a side of myself few have seen. I'm always the cheerful, strong, look im in the eye and kick him in the ass type of person. But I'm really not. I haven't cried yet-feel once I let go my world will crumble. Never show weakness. I'm of people telling me how strong I am. I don't remember signing on for this. I was dealt this hand and it is mine to play. Just get very tired.
May be best to turn off CNN as it seems they talk all negitives..... I find the days are a little easier if I don,t watch all that BS and look into the sun rather than the clouds..... Maybe they (cnn ) should mention that NO-ONE in this country can be turned away from a hospital if in need of health care.... And also that contrary to what you hear , We still have the best health care system in the world............. Bluedaze, I agree , some days suck and I must think of good times to get through................. Dan
Well, this is what I do at night. Play two-handed Scrabble with myself; read a book; come to this website; enjoy the view from my window; maybe piece a quilt. Golly, I am accustomed to living this way I don't know if I could manage going back to the real world. Oh, I forgot - Merlot for me. Anyone try Black Box? Since we live in our rig this is easier to have with us and it actually is quite nice. I do miss being able to volunteer somewhere, but that is impossible these days...
Don't we all have our days? Gosh, if you didn't you wouldn't be human. I think everyone has a pity party from time to time. That's to be expected when you get worn down. And how can you not get worn down sometimes with all of this?
bluedaze, I'm like you, always Miss Sunshine. But here I let down my guard. People here have seen a side of me that my friends haven't.
Dan, yes, I think we CAN get the best health care in this country if we can afford it. You're talking about emergency care. This year I've had a colonoscopy, mammogram, pap smear, annual with blood work, chest x-ray, dental check up with cleaning. All I had to pay was a co-pay, for dental, nothing. But if you don't have health insurance, which MANY in America don't have, those costs would have been staggering. I look at the statements from Bx Anthem & know what it would have cost me without insurance. It's the preventive care that the uninsured don't have.
I'm not turning off CNN or the nightly news, because I have always wanted to know what is going on in the world. It doesn't depress me. Even as a teen, just about the only TV I watched was the news. I know the media slants things, but still, I want to at least be exposed to world events. But I balance that out with other things in my life.
Wondering what the "normal" world is like often comes when we are totally adsorbed in something. Years ago my sister was dying of cancer. She lived on the west ocast and my other sister and I took turns going out there from the east coast taking care of her. Our lives revolved around her care. Between the injections for pain, the delusions, the countless doctors appointments. Here we were in San Franscisco , a city I love, and all we could see every day was horrific pain and suffering.
At times like these , it is natural to long for the normal days. You know, those Hallmark card kind of days ( with the whole family smiling around a table or living room that looks like it came out of House and Garden) But down deep, most of us know that normal is like the concept fair. Everyone has a different idea of what it is.
In one way we are all fortunate... no matter how much time we must stay at home ..we have access to the web. When I am tired of thinking about AD, I look up random topics or places or people on the web. You can travel to places on line and even have tours. I learn about things that I thought about but never researched. I also am a news watcher but have often been annoyed about how briefly they cover a news item. When I hear something that interests me , I will follow it up on-line. Sometimes , I just browse. Amazing what you can find of interest....
I'm not much of a wine drinker ..What is Shiraz like... sweet , dry ?
Anita-we have to take you under our wings. Shiraz is a red wine-dry but not bitter. Good and cheap ones come from Australia like Yellow Tail which is found only at very exclusive wine shoppes like Sam's Club.
Last night a close friend and I commiserated with our losses. Her husband died within a few minutes of her leaving the house to go to work a few weeks ago. There was no warning and she is just beginning to emerge from shock. I watch my husband die bit by bit, day by day to AD. At one point she was able to quip - "Both ways have their down sides." We chuckled and it felt good because we shared an understanding that few could.
We would join you as the corks get pulled - or even the caps turned.
bluedaze, did you watch the youtube video of Christian the Lion? I loved it and I cried and cried. That was the first time I'd cried in years, and it was a great release! I've always been the strong one too, and I agree, it gets old very fast. I remember when my mother died when i was 19, I cried when I heard the news (she died during an operation) but then I got picked up and taken home, where HER mother wept and wept and wept, and I had to pull myself together for her. And never cried again for her - until weeks later when someone took me to see Gilbert and Sullivan, and I started crying and crying while watching the Gondoliers. And can almost never cry for others' deaths; if I couldn't cry for my mother, whom I adored, how could I cry for others!
Frand, I like black box too. Very handy.
It's a glorious day in the northeast today and I'm going to take my husband for a ride up to our son's house near Boston. It's a necessity thing but I've promised him sushi for lunch. It will be the first time in weeks he's left the house except for the hospital episode.
briegull I loved Christian the Lion. If you Google it you will get much more into which I also loved. Funny-the video is not new (look at the clothes) but is just emerging.
Too bad we aren't all in one area...I have a wine cellar fairly full of good reds and can't drink it very often for health reasons...stick to the whites..love to share! My DH isn't supposed to drink at all now, so friends and family are reaping the benefits. If you live in a state that allows wine to be shipped to you, there is a great wine club I belong to. Santa Barbara Winery has lovely vino and if you belong to their club (just have to get a couple of 2-bottle shipments a year) everything is 20% off and a $9.50 shipping fee for however much you order..one bottle or 3 cases! I was thinking of this because of their Syrah which is lovely. Very reasonably priced. Just tossing it out there..no ulterior motives.
bluedaz, How fortunate! cause I only shop the most exclusive places like Sam's...next time I'm in, I'll look for it....
I think I could develop a real taste for wine
As I mentioned my DH has fallen in love with Christen the lion video. He can not use the computer any more and so he asks me to replay it....OFTEN.. I don't mind, its one of the things we can enjoy together. Nikke mentioned the documentary and I went online and purchased it. I haven't receieved it and who knows if that will keep him interested. When ever he shows an interest in something... like old music or shows, I get it for him on line ( thank goodness for Amazon) No matter how much we talk about it or talk about me ordering something for him.... He is always surprised that I knew he liked the item. He is like a child that way...... Someday watching that video together will be one of the better memories.
Anita, don't listen to bluedaze and Catherine. Merlot, definitely. (Although the part about Australian wines is true ... some of them are quite nice. And Argentina has some great red wines, too.)
I've belonged to Winefinders for many years, get a couple of bottles per month (one white and one red) averaging $7-9 per bottle, from funky little wineries in California. It is great fun, something to look forward to and a great way to discover different types of wines. They got bought by Wine Insiders, which also has wine clubs that ship from wineries all around the world if you don't want to stick with California wines:
A Question for Bluedaze: Did I see a comment by you that your husband is in a Assisted Living place? My Dh asked me this morning if I wanted him to go to a NH. I said "NO". He sees how I am still upset with him walking out of the Drs office and being so angry....I can't help it, I just can't seem to get a grip after that event and then it continued the rest of the day and I was extremely frightened. I was wondering if with Assisted Living do they have to take care of their own medications? What are the requirements if I may ask? Do they take AD persons? It's a little early today for wine, but may try a "happy pill".
Judith, here in my area, you go for an assessment of your LO needs. they will ask you how much care and according to that they will price it i think -its quite pricey esp if you pay out of pocket and they are 'alzheimer specialty places: divvi ps they can do the meds too if you pay for that-you would have to go to one and get the assessment first to kow how much.
Judith-I am fortunate to have a dementia only facility not too far away. Unforturately my husband is in the "final solution" unit. The entire building is secure and my husbands' unit even more so. Meds and personal care are part of the package. All staff are AD trained yearly. Hospice is in with my husband/ they provide all equipment (hospbed, wheel chair, oxygen, incontinence supplies and some medications). An rn is in almost every day and is called before me for problems. Hospice supplies an aide to suplement the pesonal care provided by the facility. MC pays for the hospice care which is over $4000/month. Of course the rent is on me. It took me two years to find this place. Every time I thought I was set hubby got worse-much worse. I'll be glad to answer your questions-just don't feel like writing a book at one time. I'l warn you-though: I have a mean sense of humor. bluedaze
Thank you so much for your answers. So sorry for all the pain I know you have had to go through. Your answers are all I needed to know. I have never heard of a place like where your DH stays. Of course there is so much of this that is new to me and it is a real learning experience. Everyone here has been so helpful and I know others are grateful for the sharing of information also.
To return to the question, I spend evenings watching TV, getting things in 'order' for the next day, reading email, this website, etc...on weekends, well, let's just take today, Saturday: 6:30am-up w/DH (soaked & dripping onto floor as we went into bathroom)--cleaned him up & changed bed pads & then he went back to bed...i stayed up & cleaned up bathroom; then made coffee & read a bit on this site; then dressed & went out to water plants (it was to be over 100 here today--that's TX summers); then DH up & got him showered as he was wet again...did our shaving, nose hair clipping, ear clean out, hair drying, dressing...then got him bfast & sat w/him to eat a little yogurt & banana bread myself ~ then he retired to the back porch under the fan & I decided to SCRUB the floors by hand! They desperately needed it...little by little, got them all done, in between bathroom, lunch & drink breaks for DH. Also handling laundry today ~ About 8 loads, sheets, etc. ~ Re-cleaned the bathroom floor after one of the bathroom breaks...singing to keep from crying ~ Now settling down with my "wine of choice", bud-lite...however, fixin to go into kitchen & get started with dinner. Feel like some mexican food tonite, so I'm making Chicken Enchiladas ~ Spanish Rice (BOX) ~ and maybe a salad...need that for fiber for DH! Then will retire to front of TV...my knees are sore from scrubbing!! Oh, and don't want to forget that through all this, having HOT FLASHES as I go thru the change of life on top of DH stuff...still singing...Looking forward to tomorrow :)
I am in the throes of a full-blown cold or allergy. Been in bed all day with my book, computer, TV, kleenix. Missed my good friends wedding. I told dh he would have to take care of himself today. But, he can't even get something out of the refrigerator. He took his shower but called me to help him put his clothes back on. Daughter took him to granddaughters ballgame this evening.
Imohr, sorry you are down today as well. i was fine with my tooth until i took the painkiller. i had a super bad reaction and was very ill for a couple of days from it plus i couldnt take anything else for pain my stomach was in knots. better today but still weak. hope your cold is better -reading but not posting much as i get whoozy sitting up too much-DH has been a trooper. divvi
Isn't weird when you can handle the big things, however, the small things get to you. I needed to go food shopping this morning, since we are to have stormy weather today thought I would go before the weather hit. First, I tried to get hubby in gear to go, most mornings he does pretty good, however, this morning he poked around, finally got him in the car....but not before he spit on the garage floor...that's a new thing. We get to the grocery store & as we are getting out to go in, it starts hailing, no rain, just hail. I hurried him in, get the cart for him to push, which he does right into my heel...big bruise & scrape. We go to check out & he is putting the groceries back in the cart as fast as I am placing them to be checked out..finally got that under control. Of course by now it is raining, hurry to put the bags in the car...while he stands to wait for me to tell him to get in the car. Finally, we are on our way home, of course the rain has stopped. The last draw came when I am carrying the groceries in & drop the bag with eggs onto the garage floor...only 5 eggs of 12 survived. Now I have a headache...wonder why? And that was all before 11:00, can't wait for the rest of the day.
Oh, Kadee, some days it just doesn't pay to get out of bed, does it? So sorry for all this. Maybe it would be a good day to just settle back, try to relax and chill out! Hope things settle down for you. Hugs...
Yes Mother said there would be days like this, she just didn't say there would be so darn many. Dreary rainy Sunday afternoons are only good for 1 thing. A nap. Have a good one Kadee and hopefully will feel better later.
Kadee - I learned long ago with kids and now with hb when he pushes the cart, to keep one hand on the cart to direct and stop when I need to. As with kids, I also tell hb to stop and wait. Then I grab the cart when time to start.