So glad it is finally January 1st - now maybe I won't have to hear 'have a happy new year' or 'happy new year' that is all over Facebook. Now back to the nitty gritty awful life of Alzheimer's.
I am going to try and get myself into better shape. With all the death from just before Thanksgiving to now I need to do something if I am going to survive this. Not just survive but be physically able to start a new life. No new years resolutions - do not need a guilt trip for breaking them. Just a goal to try and get it together mentally to move forward with me in mind.
I have a doctors appt the 2nd to get my thyroid renewed. I am hoping that he will raise the dosage back up. When the jerk PA in Nevada lowered it I started feeling crapping.
Yes Charlotte, I agree, no resolutions, just goals. I've already started to clean out my bedroom. I gave away a TV that I wasn't using & I took out a HUGE bookshelf that I never liked. I have a few more things to take out & 2 closets to clean out & then this spring I'm going to paint. And that is just the beginning! DH has been in the Veterans Home 15 months now & have finally come to the realization that I CAN change things in MY house. Not what I had planned for our “Golden Years” but as we say........it is what it is!
Charlotte, good for you for thinking about yourself & your health. I hope you get the thyroid meds dose back to where it belongs.
I too am very tired of hearing "Happy New Year" and am glad that January is finally here so that our life can get back to normal, (our AD normal, not the other one). I am wishing everyone a "Hopeful New Year" today. We might find happiness hard to come by in our world, but we can always have hope. Goals require hope in order to be achieved. Hope for some sort of future post AD is what keeps me going. I've been cleaning our closets for a month now. Today I will be taking down the Christmas decorations and putting the house back to its normal state. Getting in shape is a great goal, Charlotte. Something I set out to do last year, at the urging of my DD. Now I am rewarding myself with a new wardrobe. I hope that tomorrow the doctor agrees with you, and puts your thyroid meds back to where they belong. Feeling better would be a great start to being in better shape.
Ditto to making a new life for myself. I am tired of being depressed. I have already started walking a mile each morning and will now add another mile late in the afternoon. Also, going to join every senior center within 15 miles which will be easy since I live in Orange County California and all cities go from one to another without you even knowing you are in a different city. Later in the year I am going to go to some places I have never been with a tour group. Life goes on for all caregivers and those left behind and we must make the best of it for OUR SELVES.
Judith I went to my Cardio MD after wife's passing and said I've got to get back into taking care of me. 6 years of cargiving has taken a physical a mental toll. What are the limits to avoid hurting my self working out? He wrote me and RX for PT General conditioning... was feeling great until Friday night when an accidental push ended me face first on the pavement with a broken wrist and big shiner and banged up knees, Got back on stationary bike for first time yesterday and did my 45 min ride to nowhere, Great for mind and body!!!
JudithKB, Sorry about the depression. The holidays really can and do take a toll on many of us as caretakers and ones have lost the loved ones. Depression hurts and I hope that you'll be feeling chirpier soon.
Yes, so glad holidays are over , although I did enjoy some days itch my children an d my siblings. I too want to work on personal goals . I have been going to water aerobics for two yrs ,three times a week. We haven't had it thru holidays and wont until next Monday, but I can attest it is a lifesaver for me. Both mentally and physically. I haven't lost weight doing it, but has helped me not to gain. I hope to work on that part this year, and also to try to go thru my house and discard a lot of "stuff". My DH is a firm stage 6 and I want to be ready should I have to move. I live in a small town, and I'm not sure where I'll live if ink have to place my DH. Just somewhere close to him. I just want to prepare myself as best I can for changes. I think we all need to be kinder to ourselves, find what joy we can each day. God Bless!
Lorrie, I hear you & I understand. When my DH was home I had NO time to myself. My daughters & a friend would give me a few hours of respite, but I always used it to run errands without him & I had NO time to do anything in the house except what was absolutely necessary.
I placed my DH in the Veterans Home in October of 2012 & I was sure that I would get so much done last year, but that didn't happen. I spent most of the time doing the basics of everyday life, visiting him & a lot of time on my computer. I WANTED to do more, I just couldn't fine the energy or motivation.
But for the past month or so, as I looked around OUR house, I realized that now it's MY house, & while I'm not going to completely redo it & get rid of all of his “stuff” I am going to clean out & declutter & I've already started. I tried to declutter when he was home, but he wouldn't let me take anything to the thrift store & like I said, I just didn't have the time to go through things. So now with him in the Home for over a year I now realize it's time to get going.
Thanks Elaine for your understanding. I do understand how you would need a year to just gain some strength and motivation back.
Today, my step daughter who lives close by and is helpful called to invite us to dinner. I was just too weary to even Go. I just wanted a few hours without him. I felt guilty but part of me knew I needed a break..
I'm going to join you in thinking and working toward goals instead of using the word resolutions. "Resolutions" can just be a set up for failure and guilt. Goals feels much more positive.
I enjoy the feeling of cleaning things out. I can't believe the paperwork I kept. I really went through clothing last year for donation and next hope to go through and donate handbags (my weakness).
The last two years husband was home I refer to as the lost years, when I was busy with him but lost myself as a person. I had hoped to accomplish more since his death but didn't. Forgotten years.
I've often wondered, abby, about the aftermath of being a caregiver for AD spouse. We are bogged down in this job for so long and can only think one day at a time. Can't plan ahead because you have no idea what "ahead" means - could be a year, could be 10 or 20 - could be tomorrow. Then, one day finally you're free of all the responsibilities of caregiving and don't know or remember how to do anything else. I suspect that's how it all goes. I hope I'm wrong.
I hope you are rebuilding your life one day at a time because that is now your new job. Sending you positive energy for your new life!
Me too with the goals...If I make a resolution I break it first thing out the gate. So goals it is. And I have goals to get my house back in shape, my yard, me when I finish PT for injuries, photography, knitting so I can compete with Joan (haha fat chance). Things like that for me. As to the holidays that just finished, mine were good. I'll tell you a little story about how I managed to get through it. In 1971 I was ordered to Okinawa for 2 years. I got there in Nov. I went to the "ville" and got some nice Christmas things to send home..but first I got a letter from my mom saying " since you are so far away how about we just skip Christmas this year." Needless to say the box of gifts did not go out and I was pretty miserable. New on the island, didn't know many people, was not on island long enough to be able to go off island ( to Taiwan) and finally on Christmas Eve I took myself to the village of Ishikawa City and bought a little tiny Christmas tree made of plastic..I still have it..set it up and looked at it and decided I was not going to be that miserable ever again. The next year, when I was CO of a company, I decided that my Marines were going to have Christmas. I was a 1st LT and only made 330.00 per payday..but I got goodies for everyone out of my pocket, got the Bn CO to play Santa and ordered a "Command Performance" meaning everyone would attend a small function at the Co office before liberty sounded. Long story short, everyone was surprised and and happy and years later I got a letter from one of the Marines who recalled that party and wrote to tell me about how much appreciated it was. As Christmas and the holidays began to descend upon us, I was feeling a touch glum at the idea of it being not only Christmas and my birthday without my DH but the 1st would be our 37th anniversary. I decided the holiday would be what I made of it...so going back to 1972, I put a Christmas together for the girls with sentimental things that belonged to their dad, and I put some goodie baskets together for the usual suspects in my neighborhood. The only day that was a little iffy and I spent quietly alone was New Years Eve..I declined a party invitation cuz that just didn't feel right. So I did manage to have a good Christmas and birthday with friends who have been my lifeline since the death of my husband..without good people who are there for support it may have been different, I'll admit. I just found out years ago that sometimes I just have to dig myself out of myself and that doing something for someone else, especially those who have been so supportive, is where there is some reward and I know my DH would be pleased. Now I can go back to being "Grumpy Cat".
My only resolution is to make no resolution so I won't break that. My goal is after 15 months to open the walk-in closet door and get dh's clothes in a box and out the door so someone can use them. No month is set for that ---- just this coming year. His desk is still like it was the last time he was at it so have to take care of that too. I must move on with my life I know but that is not coming easily for me. I have been in water exercise for over 10 years and enjoy that not only for the exercise but for the friendship I've gained from the others that attend. I'll continue with weekly Bible for the same reason, learning and companionship. I tend to isolate myself and have to really push to just get out of the house. I still have my sister in ALF to look after but hope to go the dh's army reunion in March to see old friends for a couple of days. So my best wishes for the coming year to all on Joan's whatever your circumstances we have each other and it is still my lifeline. Thanks
Haven't been on here for a while but feel so totally alone ... people wish they could help but they really can't ... I'm finding that it's a road that you have to go down by yourself.....I am afraid of what this next year holds for my DH ... he has regressed so much this past year especially physically but is still functioning so that I can work my 3 days .. don't know how much longer that will last though. Curious to see how many people will admit that they wish sometimes that their loved one would just pass away before things get really bad. I feel bad for him ... he can't drive ... his speech is horrible to the point where I can't understand most of what he says. I feel sorry and sad & guilty all rolled into one. I feel like my siblings lives are going on and they are enjoying their "senior" years together but I'm at a stand still. I don't want to feel this way ... I love my DH ... we've been together 44 years but I'm tired all the time ... frustrated and scared all rolled into one. I just keep telling myself that he can't help what's going on ... he didn't do anything to bring it on himself. To be honest with you ... I don't think counseling with other caregivers would help me a bit ... I don't want to hear what could happen or what did happen....I have to live in the "present' not the future. Don't mean to vent but I feel like screaming most of the time.... it is affecting my health and I have my own health issues also. I don't want to fail my DH ... I want to be able to say when it's all said & done that I did my best to help him have a good life. Life just gets hard sometimes !!
During what I refer to as the lost years I earlier posted about how I lost myself those last years with my husband. It is a double meaning though, because it also refers to all he lost. Everything: career, community involvement, driving, reading, conversing, eating. Sometimes I think, no wonder he was angry. I did scream. I would sit in my car, sometimes take a short drive, sometimes even just sit in the car parked in the garage and scream.
You said, " Curious to see how many people will admit that they wish sometimes that their loved one would just pass away before things get really bad." I will lose this post if I leave it to look at the title of the topic but Charlotte started a thread on this within the last week.
Blessings for your strength which does show.
mothert,
Thank you so much for your kind wishes! I sing that song "Try" to myself all the time.
Florence*,
I finally did that with my husband's clothes. Boxed, bagged and ready for Goodwill pick up. The suits and ties were the hardest but maybe it is better I don't look at them everyday, too much of what was. Vickie* was my inspiration.
I did make it to the doctor today for my thyroid renewal. I do the labs tomorrow and go back later in the month for the yearly physical that I have not had in 6+ years. I will even schedule a 'booby squeeze'. Hopefully at that time we can cover more of my concerns about my health.
Still have the inversion weather pattern so the air is not the best. Rain supposedly coming that may help. Time will tell.
It was - 29 F when I got up this morning, and we are headed for a balmy high of -11 F. But the sun is shining brightly. We are going to go out today to get the mail and some groceries. Haven't done either since before Christmas. I'm taking a picnic cooler to put the fresh produce in, not to keep it cold, but to keep it from freezing while it is in the car! And I think we will go out for lunch - haven't done that for a couple of weeks either, it will give us both a bit of a break. The cold weather will keep most people from venturing out so we should be able to take our time as we go about our activities. Warmer weather predicted for tomorrow!
I truly hope for special smiles and happiness for all of you here, in this New Year. I thank you from the very bottom of my heart for all your knowledge and support, just want to cry when I think how much it means.
For the most of you that are struggling at home to take care of your mate, my heart really goes out. And also of course for the ones that have their own health issues. I wish I was a magic angel/fairy that could swoop down with my wand, and sprinkle you with peace. And you would not know where it came from, but you knew it was real.
Up until about a month ago, I have kept a diary of this past just over 3 years experience with Dado's decline, and my thoughts crazy and sane and in between. Now that I am in an "in between" phase, not so much. I know though, that the diary will grow again , when the hurts are worse, those are the times to write. For now, it is a balm to have many moments of hope, and even laughs, and waning anger at others.
My darling is in a home where it could not be much better, of course not perfect but probably the best there is here. Our finances, are at least for now, very good. I am managing to sock away some for that time when I will be alone, and the income will shrink to very little. Thank you dear God in heaven for this break in the chaos, enough of a break to gear up again for the next phase. Thank you for giving me knowledge, hope, strength, love, and health.
Coco. I am so glad that you can now be in a place where you have many "moments of hope, and even laughs". You are such a kind-hearted person, and you have been through so much, I hope that your "break in the chaos" lasts for a long time - you deserve it!
DH enjoyed being out today, even though he was very confused about what we were doing, or where we were going, while we were out running our errands. I think it was good for both of us to have a change of scenery for a few hours.
Today was a good day for DW. There was a music program here at our retirement Inn - a folk musician playing fiddle and guitar and singing. I took DW to it and she really enjoyed it, particularly the fiddle playing. The player noticed her reaction and seemed to be playing directly to her.
Heard from my husband's niece today in reply to a different subject. She said they had to admit their mom into a psych unit for a 2 week evaluation. She is 3 years ahead my hb in this disease. I know after their dad was admitted in the AD unit he was put on I think resperdal, so not I have more possibility that my hb may at one point need psych drugs. Hb has always been easy going like his sister but we all know this disease could care less.
So far this year has started out worse than the last one ended. DH has progressed, having trouble with dressing and bathing and restroom use. We have an appointment today with the neurologist. It is a 6 month visit, for LTD and SSD reasons only and to get prescription refills. My MIL decided she wants to go. She found an article in the paper that said large doses of vitamin E can help with daily activities with Alzheimer's patients. Well, the first line said that. The rest of the article she did not read. It said that you should not do if taking Alzheimer's medications and that it could cause more harm in patients. But then again she only reads and hears what she wants. She makes comments like so and so in church came down with Alzheimer's. It is not like a cold and flu where you just come down with it. I am tired of his family acting as if they know more than I do about this. They do not research on the internet or have not been to testing or doctor appointments with us. They came to one appointment and heard half of what the doctor said. They did not hear the real stuff because they are still in denial after 9 years. They always tell me well it is just the AD. They do not live it 24/7. When I ask if I can drop him off for a while they act like it is putting them out. Then they will get two of them together to keep him. It takes 2 of them and they think I should handle it by myself the rest of the time. I have had about 2 full days without him since Thanksgiving. I am sorry to vent, but I am tired. He ranted and raved until 1 last night. I am asking the doctor today for some medication for this. My goal is looking into placement by the fall if I can wait that long. It will be a struggle with his family and him, but it is that or he is on their doorstep. I am going to start planning on my future. I have too. I am only 52 and have not had a full time job in 4 years. We are ok money wise as long as he gets his LTD and SSD. But when he is gone, I will have no income. So this year buying big girl panties and getting started on it. Wish me luck!
I read the article on Vit E but like all the others it is not a cure, not even give hope. More like something to help certain people think they are helping. I wish they would hold off on all this articles until something is more certain.
Jackiem, go for it. You are young. Even at 52 it will be hard to get back into the workplace depending on where you live. I would look at soon as possible to place so you can go on. You may want to drop him off with mom for a week and go on a vacation. I bet after a week opinions will change some.
Received a call from the new doctor I just went to. I have not been taking my supplements or exercising the last year so knew my cholesterol would be back up - usually in the 220s which is not really that high. I started back on the supplements, need to buy some almonds, and start walking more to bring it back down. His nurse sent me a message that my cholesterol was up and wanted to discuss putting me on a 'statin' on my next appointment. He must not have listened to me when I told him I would not take a 'statin' cause they are nasty.
jackiem29, even if it's temporary, until the LTD and SD are settled ad placemen can be arranged, see about getting some in-home help. Even if you need to fiblet that they're there to help you, a few hours 2 or 3 times a week would ease the pressure. Then use at least part of the time FOR YOURSELF.
Unless your DH needs to maintain contact with his family, start easing them out of the picture. It was my experience that they didn't really want to "know" nor actually help constructively. They did , however, retain the right to criticize and advise. That escalated to verbally undermining his care, and from there, over time, to actually interfering. Ours was an extreme case, but you just don't need the extra stress. mary75* is correct------"...ignore them and do what you know is best."
We saw the doctor today. His mom went with us. She of course didn't understand anything the doctor and I talked about. She is 85 and I think she has a few issues herself. Anyway the doctor said vitamin E will do nothing. Most study's were for MCI and really didn't pan out. I did get Trazadone for DH. Has anyone had a LO on this. It is 25 mg at night at first. If I need to in the daytime and can give up to a whole one if needed 50mg. He is on aricept namenda and Effexor for depression. He said It would make him sleepy. But I need a break at night for sure.
I wish I could drop him off for a week. They really wouldn't do that for me. I take him to my parents when I get my hair done. But my dad has heart issues and had a pacemaker put in, so my mom has her hands full. I will have to look into respite care if his sister dosent step up. They better not have an issue with it.
Thanks everyone for the support. I always think I can't wait until I can leave him for a week or place him. Then I get sad realizing I need to and we are at that stage.
I took it for a couple years. I had 15 minutes from the time I took it to get to bed - more than once I was climbing up the stairs dizzy/llightheaded. But after I slept a while I did not have that problem when I would get up. My only complaint was I gained a lot of weight on it.
Jackiem, my husband took Trazadone 25 mg. - it helped a little with sleep, but like Charlotte, he gained about 20 lbs in 7 mths. I would not consider it a cure-all drug - at least not for him. I hope it works better for your husband.
Hi My DH has been on Trazadone for two years. He started on 25 and as the aggression worsened the dose was raised. He was on 112.5 until last week and the LTC Dr. Lowered it to 112. They will be watching him for changes and if the aggression gets worse they will raise it back up. As for weight gain, he did gain 5 lbs, but only since going into LTC and that was because he ate everything they gave him but now the dietician has helped him and he is fine. I guess the drug, as with lots of them, works well for some and not so well for others. I hope it works for your partner.
Hoping 2014 will be a year of reintegration. My spouse was one of those many who departed in '13, and I feel like all the emotional sides I buried to get through the past 10 years are emerging...finally...but in a gentler way. They are processable now. But I empathize with all of you who've been here, now. I guess it's pretty standard for us to feel vulnerable, shaky, and raw as we get spit out this end, and start to work on putting ourselves back together.
Happy that my 3 girls are doing well in life. The kid, 21, still needs some help, and I'm working on that. He thinks he'll be fine...which I guess isn't an entirely bad thing.
Put me down for raw as we get spit out this end. I'm two weeks from starting my third year on my own and my life is a lot like Grumpy Old Men before Ann Margret. I stare out the window although I haven't sunk to ice fishing as a life yet.
I had a dream last night and Dianne was in it in a wheelchair but talking somewhat and a bit more animated. It's startling to hear her voice and see her personality working even in a dream in a limited capacity. She has no such thing in real life anymore.
I wonder what those of us who remember some dreams go through. I know this is part of the way my own mind is dealing with this where I change her more to what was before. I frankly hope it doesn't end after she actually passes. I wouldn't mind hearing if anyone still has dreams with their spouse in it afterwards.
I joined Classmates and posted our story on it. Both of us graduated in the same year and there are many that will have memories of her. It's odd how we choose our connections. I have no idea what sort of people I will know or what I will be doing or where I'll be living. I'm very fortunate to have choice; but, I have nothing pulling me this year except seeing this through with her and taking more steps on my own.
The greatest service I could provide to humankind would be to inflict our story on them. The most bored, uninspired relationship might get some TLC if they looked at us. It's almost funny in a sad way how much so many do not appreciate. On the other hand it would be like going to a funeral where for five minutes you're grateful to be here but by the time you're leaving the parking lot you can't believe what idiots get behind a wheel and can't drive.
I just had the most miserable 3 days of my life. I took my husband to visit my best friend, 2 hours away, for a few days. The second day we were there my husband got sick and threw up all over her bathroom and I had to clean that all up 2 times because he would miss the toilet. Then, I guess due to the illness, he became sort of delirious trying to move her things around and aimlessly walking around and finally peeing in her wicker trash can in the bathroom. She was not in the house when he did that, thank goodness, so I bleached her entire bathroom down and threw away the trash can, threw a bucket in the car and took him home. When I got home, I started throwing up and had the same bug so had to take care of him and me while I was the sickest I have been in years; so bad I could not even hold down a few sips of water, losing 5 lbs in 2 days. I am feeling better today, thank goodness. Life is not easy.
Photoartc, that sounds like the Norwalk virus that is closing hospital wards in two of the largest hospitals here in Vancouver, Canada. My son had it, too. But what a time for you! It sounds like a nightmare: away from home, a sick husband and then being sick yourself. Im glad you're feeling better.
Drove up to grandkids today. Hb was excited to go see the kids. After filling up with gas I gave him the mileage to write on the receipt to check milage but there was no pen in the car. I told him where there use to be one until he cleaned it out a couple months ago - wrong thing to say. He started crying. I asked if he wanted to go home but he said 'no we need to see the grandkids'. Got there - played a little with them. then granddaughter and I started playing Uno. He sat on the couch and slept for 3 hours while grandson played his video games. On way home he kept asking what he do for his back to be hurting. I kept telling him it was probably from the way he was sitting on the couch sleeping. You all know how hard it is to repeat something like it is the first time!
We arrived home at 9, he fell asleep in his chair then got up at 10 to go to bed.
I have noticed him wiping tears a little more so may be getting time to call doctor about maybe an antidepressant finally. Will see how it goes after he gets sleep. I think with all the wind the last couple days he has not slept well and I know it is stressing him out. He keeps wanting to know when it will stop - an RV is not quiet withe high winds.
Charlotte, my husband used to be affected by noises like that. What can you do to stop the wind from blowing? Especially at night. It almost drove me out of my mind.
Earplugs. The wind bothered Claude also and living in Oklahoma and Texas, it never stops. I got him some soft foam ones. He could still hear but it muffled the wind noise.
I don't think it is the noise from the wind as much as the rocking of the motorhome. Not much can be done about that. Once he is a sleep he doesn't hear anything -the CPAP drowns it out according to him. Thankfully the wind is dying down to just 5 to 10 tomorrow.
Ah, blue, there is nothing more therapeutic than gardening. Here in the deep freeze of Minneapolis, we cannot hope to dig in the dirt until at least April.
It was in the 50's today in Tennessee. I wish I had thought to work in my flower beds. My flower beds now are just pots on the front porch and around the swing in the back. It's supposed to snow tomorrow morning with another cold front moving in.
Charlotte-We were in a 5th wheel by a lake outside Okla. City - clocked to be windier than ANY place- the wind blew night and day for about a week when I awoke one morning and all was quiet I thought maybe the world had ended - just kidding. But constant wind will really get on your nerves. I've read of pioneer women loosing their mind from the constant wind in western Okla. and Kansas and I believe it. I understand how RV's rock just from walking sometimes and to have the wind is really bad. My sympathy to you and I hope it calms down soon.
Wolf - I have had no dreams with my departed dh in it. I have begun to write about our life together just for my children's benefit. I realize that there are things we did before they came along that they might find interesting. It has helped me some to relive those times and I've tried to be honest so they will know there were good and bad lean and not so lean years. You have a gift for writing and I'm sure your memories would be very interesting and insightful.
That's kind of you Florence. I have no children. I hope that yours enjoy reading the memoirs. I would have been interested in reading such a book by either my mother or my father. To see what I saw from my eyes but through theirs.
I'm afraid our situation is deteriorating up here. We're not in pain and that is something. From the first signs to here has barely been ten years. I can't imagine what closure such as that feels like or what else might be inside me that hasn't already stuck it's poker through my eye.
When the grim reaper comes for me I'm going to laugh in his face. I get to invent a shiny new life in the accelerating decrepitude alone. Got it. "What did you do?", I'm going to ask him, "Ride a snail?"
I can just read my memoirs now. What's your story daddy? Well, your mother died early wasting away like a tree in a desert and I waddled around with my pants down until someone finally put me away which is why we didn't have you and why I'm not writing this.
I wish we had had children. They would have had lives. That's the thing to have. Even waddling around with your pants down. What a planet.
Caring thoughts to you! I can't imagine ten years of this pain, exhaustion and sadness. We all know we must take care of ourselves. But, I know I lack the motivation. I feel I have lost my energy and enthusiasm.