I keep feeling I just can't take it any more! And then I gather myself up and WHAM something else. And I know I'm not the only one and my troubles pale by comparison to some here, but I know we're allowed our own pity parties here, and I'm feeling pitiful. I'm feeling homesick, but for an unknown home since we moved here two years ago my old home doesn't feel like "home." And I don't want to go back there and I don't care about staying here, but I feel homesick.
I wouldn't have thought I had it in me to handle the Alzheimer's/Dementia caregiving life and it is so difficult and sometimes mind blowing in its confusion and loneliness and fear. But since we seriously started this journey looking for a diagnosis late 2006 with marriage affected negatively for a few years before that, it seems that so many things have gone wrong that it is almost unbelievable. I sometimes feel cursed if I were to believe in such a thing.
The awful experience of coming to terms with and dealing with the financial mess early on, learning to do things I'd never done, taking over completely everything DH had previously done, getting him retired early, getting our house up to snuff to sell, being taken advantage of an unscrupulous real estate agent, selling in a declining market. Then finally moving us half way across country to an idyllic place where he would be able to walk everywhere, where there was music playing most nights which he loves, where my family was close by, where the natural setting was breath taking. Then having to deal with his drinking, my family turning into strangers who turned cold to my situation rather than I don't know risk being vulnerable to my our pain, risk having to put themselves "out there." Who knows, they won't discuss it. So much loss over such a short period of time, my DH daily and my family. I feel in a constant state of grief. My friends left behind I can at least call and e-mail when I can get it together to reach out.
(END OF RANT I PROMISE: ) Then this horribler renovation from hell. Bought one house, too small, then another and endured 6 months reno before we moved into an incompleted house which is uncomfortable to be in and a daily reminder of the shoddy work done here and the difficulties in finding anyone capable of finishing the unfinished and repairing what just won't work. A broken water line after the first storm, broken sewer line after the ice storm, both of which we had to replace at our cost, a couple thousand for downed trees. And then the insurance company will not renew our homeowners because of risk with no railings on sidewalk. City not responding to calls regarding this or any of the other issues only Public Works can deal with.
Finally got control of depression and had great plans when DH went away for 2 weeks end of June only to get sick, finanlly end up with pneumonia, and housekeeper/helpers I scheduled to help me cancel or no show or keep me waiting for hours. WHAT"S UP WITH ALL THIS? Isn't DEMENTIA enough for us to deal with? Why do so many of us seem plagued by so much else on top of this!
I deserve better I decide so make a list of the things I need to happen here to be content with this house. Start interviewing builders in April, long story, but still being strung along and postponed and simply ignored, and now strung along again. I just want to shout WE DON"T HAVE ALL THE TIME IN THE WORLD! At least got some personal control over the 50 pounds I had gained and started losing weight recently.
Felt lucky to be having a turn of good luck when I found the most accomplished carpenter whose work I know well and now I sit and wait to see if he will do the job. Called 5 days ago and no response yet. Then last week after I resolve to get a grip, be patient, and go with the flow, I wake to a tremendous crash! A shelf of rare books, double shelved, waiting till I could get organized enough to research and catalogue them for sale (I used to be a rare books dealer), came crashing down to the floor taking another double-shelved shelf with them and ended up in a mangled heap on the floor. Too much damage for me to even contemplate so I spent the day trying to find new space for them in this tiny house without looking too closely at the damage which is undoubtedly in the thousands plus they were special to me as I had spent years buying them around this country and England. I'm basically in denial on that as it's the only way I can deal with it. In the meantime carpenter doesn't call and it is recommended I be patient and not stress out trying to find "back ups" as this is the guy I really want. So DH and I on Friday drive to my family's place two hours away to see my niece off to law school. We stayed in a motel and the next morning I slipped in the bath tub landed outside the tub on the floor face and head taking the blow, really thought I had damaged myself badly, but after an emergencty room CT Scan no permanent damage. I just look like Rocky Balboa after a losing fight. Finally today I can open my left eye.
So. End of my big pity party rant. I just can't help wondering if once we get in this situation with AD/Dementia are we just prime for more negative stuff to come our way because it just seems to pile on and pile on and pile on.
And yes, somewhere still I have my sense of humor so I just have to laugh when I'm not crying. No sleep last night because on top of the head/eye pain I got covered with CHIGGER BITES while visiting my neice as was literally up until 6:00 AM tormented and trying not to scratch. So today I just gave into it and have laid low and watched some tv and listened to some friends on the phone with their own life horror stories. (seems I'm even more empathetic when I'm besieged.)
Oh, and somewhere in there my tenants (out of state) changed over, needed a new lease, needed the air conditioning repaired, the therapist I was seeing for depression was charging me $40 and collecting $60 from Blue Cross,l but turns out he was billing Blue Cross $190 and now wants ME to pay the difference. well ........ you gotta laugh.
So, those of you who feel besieged right now.....please rant away and if anyone has any tips for plugging along, share them here.
Terry, the little things stack up into a really big pile and then the pile falls on your head. you have to dig out, catch your breath and then it starts all over again. This weekend, a big thing added to my pile. I let my son-in-law take a 10 minute ride on my 4-wheeler, which is 15 years old. The only other person that I ever let use it is my son because he takes care of our stuff. I have never let my daughter and sil borrow our 4-wheelers because they do not take care of their stuff. well he ran into another bike that had stopped in front of him and bent my rear axle. the cheapest quote to repair is $480 and that's with after market parts. I just feel sick because riding our 4-wheelers is something that DH really likes doing and we have a lot of fun together. In the past, DH could have ordered the parts and fixed it without too much trouble. Now, if we had the money to buy the part, I really don't think he could do the work. Plus, DH is not able to help me reason out a decision as to what to do. It is also adding to the "full moon" confusion that we are beginning to see this week. Plus, it is just one more thing on the pile of things.
This in no way compares to so many of the problems that you are all dealing with but it is a good example of how the problems tend to build and come out of no where. We also have two underground sprinkler heads that need replaced. I'm sure that DH can do this but it is more money to buy the heads.
The only advice that I would have for you Terry, is tackle the things that really have to be done first like keep your renters happy. Some of the things, if you ignore them long enough, will just go away. Then work on the other things as you can. As for your therapist, it sounds like he/she is beginning to add to your pile of things. Probably a well worded letter explaining how you were lead to believe that a verbal "contract" existed where you only were expected to pay $40 should do the trick. If not, either don't pay the unexpected amount or send $5 a month.
Thanks Mary, I already dropped the the therapist. If his office persists, $5 per month sounds good to me. I like ignoring things and hoping they'll go away. I'm going to put a couple things in that category. I understand what you mean on the 4 wheeler situation that you can't even discuss with your DH how to handle it. The problems are bad enough without the damned loneliness in dealing with them on our own.
Oh man, I was just logging on to start a new thread, "Having a Pity Party Want to Come?" Then I saw your. Honestly, I couldn't believe it. Everyone know what a mess my life is. I honestly didn't think I could handle a hang nail at this point. Got custody of Grandson #2 today. I should feel happy, but all of a sudden I feel smothered. How do I build a life, at retirement age, with two little boys, ok, so I'm only, ha, only 53, feel like 83. Look like 93 going on 94. Now I get a frantic phone call from Jim, saying his Dr (psychiatrist) was going to send him HOME> I had it out with the Dr and am having a meeting that I OF COURSE have to arrange, to Put together Plan B. Ya, Plan B. He should have thought of that before he told Jim he was sending him home because if he can go out on all these Passes he can go home. The hell he can. HELLO!!!!!!!!! He can't live in this house, #1 if there ever was a house not made for the disabled, WE BOUGHT THE FLIPPIN THING! Who ever expected FTD to attack and invade our lives! This was supposed to be a new start, a new life, Jim at retirement age, he's 62 was the stay at home Papa. I worked, we had money to go out once a week for date night, camping in the summer, movies with Dylan, weekends away with Mom and Dylan, all happenning of course when he wasn't depressed and threatening suicide. Wasn't a BAD first marriage enough! I have to adopt the abusive, addictive, alcoholic child who cannot be rehabilitated, who keeps having babies and gives them to ME! Please don't get me wrong this is all just tooooo much at once. Litte boy #2 love it here and I am so happy that he calls this the happy house, imagine that, the flippin happy house, thank you GOD that he can't see my insides. Little Boy #1 is soooo happy to be a big brother and have Dee here. Yep, one big happy family. Then I mentioned the cruise to my Mom who was the one encouraging me to go in Feb, maybe, just maybe I'd get enough back in taxes to go.....her flippin idea. Now that little boy #2 is here, she like Jim's flippin doctor is going back on her word. "I never said that!" OK, I understand that she could not take care of two little guys at age 76 alone. So now this gets me thinking about my future. Ya, ok, what future, I love my grandsons with all my heart, and have gotten into this with open eyes, but I expected my Mom and Dad to continue to be along side me. Then Dad died. Then I met the man of my dreams, now 6 yrs later he's dying. I'm raising two little ones. Who could I possibly me at my age, who would want to spend their retirement years raising, by then teenage boys, oh Lord. What a mess. Every dream for my future that I have ever had, from the stupid cruise in Feb, to traveling and enjoying my later years carefree and in love are G O N E. So , I have to reprogram my mind, I will put my heart and soul into raising two well adjusted, caring, compassionate young men, while growing old alone on my front porch and hope to leave them enough money to bury me next to Jim.
Oh Susan, pardon me for laughing so hard at your awful story, but you do have a flippin way with words. Take Mary's advice and ignore everything you can for now. Guess two boys are hard to ignore. I guess when oujr mother's pass 75 they are allowed to say they never said everything they ever said to us. Mine has become quite accomplished at that to the point I often feel I'm being Gaslighted! That all just sucks but don't give up on the cruise in Feb. Look at how much changes minute by minute. Who knows what will be happening by then?
It does seem to be at the point we feel we can't even "handle a hang nail" as you put it that all hell breaks loose. The other night I was so exhausted after one of those days I felt I had just enough energy to make it down the stairs and onto my bed and so I announced to DH. Then the doorbell rings and I try to ignore it. In the old days I could have told him to tell the uninvited guests I was napping or bathing but not anymore. He insists I get up there. Same with the phone when I'm vigorously shaking my head and giving him the International "I'm asleep" sign. Nope. What we all need are executive assistants like my DH had before he retired and now he thinks he has one in me. I WANT ONE!
So glad you have your humor. You'll make it and when this is all over we'll meet up for some Botox sessions and go on the prowl!
Oh, my poor dears. I want to hug all of you! HEre I was, allowing myself to eat some ice cream for the first time in weeks because I felt sorry for myself because my husband is BORING and tending to his poops is BORING.. and I find people with REAL troubles that just go on and on. Wish I could have reached across and shared some B&J with you!!!
Terry, believe it or not, I was flippin crying the whole flippin time I was typing. I like the botox, but I'll need a bit more than that to go on the prowl at what age 90?
Terry and Susan, remember, girls, 90 is the new 80! (-: Sending big hugs to you both. We had a our problems dealing with AD, but nothing like what you two gals are going through. One foot in front of the other . . .
Briegull, be very, very careful complaining about boring . . . especially with the full moon coming. (-:
i can attest to the 'duties' during fullmoon briegull. today they are in full swing mode! DH has been babblign nonstop all afternoon very rare for him-and on top poop queen duties are nonforgiving today. so no whining. if we still think we have issues then we need to reread these prior posts from terry and susan. sorry ladies. i wish i could help you both out someway. divvi
After reading the above posts, I guess I have it made. I, too, wish I could be of some help to you. We do still have the rope dangling - with knots - so hang on!
Sounds like the full moon effect has descended on the ad caregivers.... I went to bed late last nite, after 12am, I was woken up at 2am by my mom crying in pain.....I gave her meds, a bit of food, and got back to sleep around 3am. At 6am, she woke me up again, still in lots of pain, so I made her breakfast, shoved the pain meds in her mouth, and went back to bed at 6:45. At 7:15, I was woken up by one of my tenants who had just driven through the garage door in his house...At 7:30, another tenant who owes me 2 mos rent called and said she was moving out by Sunday since she can no longer afford it. At 9am, I started working, and I was half way through a lawn when it started pouring. Yes, I was thouroughly drenched by 10am. I went home to change, went to see the garage door (which now looks like a pretzel, and discovered that the back garage door was also smashed, along with a window to the door going to the house, and a mailbox that was knocked down...I rushed home at 12 to feed my mom, who was feeling a bit better. At 1pm, I get a call from the Home Health nurse saying that my mom had called them and she came for a visit...and my mom was thoroughly confused about what meds she was talking. I told the nurse exactly what she was on, and thought everything was ok. I went back to mow, and within minutes, hit a rock with my edger and sent it flying through a plate glass (tempered) storefront. ($197.50 for the window). At 2, my daughter called and my wife was all agitated about a phone call she got for my son. The telemarketer actually stayed on the line because he was so concerned....she ran out of the house, screaming and yelling, and two neighbors got involved. My son in law finally drove over to try to calm her down. By now, I am not only hot but frustrated, and now the phone rings again...my mom says that the nurse called in a prescription and that I had to pick it up....so off I go to the pharmacy, only to discover that it is the exact pain med she is taking, but a smaller quantity....duh...so now we have a 45 day supply. Anyway, I am tired, fed up, and failing miserably as a caregiver. Is it possible that I would get fired??? can't wait to train my replacement.... And after doing the wash tonight, I found one of my mom's colostomy bags in the dryer....Yes, I need to rewash everything because I do not think it was an empty bag.... It certainly must be a full moon, and as soon as I have the time, I will go out and check....Being a caregiver is not fair at all.. I just want to quit.
poor phranque, you too are tired and wayyy over extended too. yes i agree the fullmoon is getting to us more than usual. so sorry you are having such a bad time of it. peace and hope tomorrow brings a new better day. ok thurs. tomorow is fullmoon. ugh! divvi
ps and for what its worth, i should have kept my mouth shut about how nice the new carpet looks. its not new anymore after today:( draw your own deductions. not a good day here either!
o my god and I complain because he wants to come home and crys, I should be ashamed of myself, yes I`m lonley and need someone to hold and love me but you all are so overwelmed with stuff I wish I could make everyones problems go away, and yes I want to resign too. Gail
I would just love a week to myself, but I do know that the coming back can be harder to take. The last time we went on a "vacation" we visited my husband's best friend and wife (I love them both) in Arizona last October. They took over keeping him occupied and waiting on me. I didn't have to do a thing for a week. When we came home and everything was once again on me, I was more angry and less patient than before. I don't know why and I felt guilty about it but I sure did enjoy the attention while it lasted.
These friends do call me and ask how I am (my husband doesn't like to talk on the phone anymore) and say they wish they were closer to help. If they were here, I know they would. It's not just empty words from them. Oh gee, it makes me just teary thinking about them.
My husband is home but I dread the day that I cannot take care of him anymore. Even my son told his sister he was worried about me when I couldn't take care of their dad any longer. I hope I have the strength that some of you have had when you had to place your LOs. I truly to dread the day---I do love him so much :(
Folly, "one foot in front of the other" - yep, I have to laugh. EXCEPT if you're in a strange slippery bathtub where you might end up face down on the hard cold floor. Interesting experience at the emergency room with my sister and husband. I was telling the nurse that my husband has AD and can't make decisions for me and she immediately asked me (even though she had heard my story) if he had HIT ME. I'm determined to keep a low profile until my the brusing around my eye clears up because I'm sure that's what people will think
As DH and I were getting ready for our little 2 hr trip to see my niece off he went into a panic because he said he couldn't find his Exelon patches. We looked everywhere. Finally I asked him if he was wearing one and he said that he had not used them for the past THREE WEEKS! What? Why? I asked. They made me itch he said so I thought it would be good to take a little break from them and now I thought I'd try it again. Sheezzz...... Since both his past neurologists think he may have FTD instead of AD, I'm thinking maybe he should just stay off it. He's between neurologists now (last one moved) so don't have anyone to ask. If he hadn't LOST them I guess I never would have known.
Ok, don't tell Joan, but moving just plain sucks. Doesn't matter why you are moving. Or where. Or how far. Or even if you want to move. There are just so many details to attend to, details that change rapidly and you have little or no control over them. Remodeling does too.(Sucks I mean).
When you are dealing with all the things that are involved with AD and a spouse there is just no reserve left to deal with ANYTHING and moving and remodeling are certainly not little things. No wonder we are all fried! Add not enough sleep, or not enough quality sleep, not eating enough, eating too much, or the wrong stuff, and the social and family isolation on top of everything else!
It's actually a miracle we manage to get out of bed (if we are lucky enough to get there), much less attend to sooooo many things going on all at once. A little rant, or even a verrrrry big one is certainly warranted!
Pat
(As for the carpenter guy, if he is good, then he is in demand. It is the norm I believe to juggle multiple jobs at once in carpentry/construction/painting/etc. The outdoor part gets done when there is better weather, more crew, and/or supplies come in. Interior stuff gets done as you can work around other trades (like plumbing, electric, etc). If parts/supplies are delayed for one job, the job is delayed, you go to another job. And the homeowner waits. That sucks too.)
There is so much verbage here, I could only scan, but it looks like what we all need is that resort where we all could live together and help and support each other and banish loneliness. Anyone know a good contractor? Phranque?
Hi Pat, you are so right and right on about the carpenter, builder methods of operating. I'm pretty on to that but good to be reminded. Right now I'm simply waiting to hear whether he will take this job and in the meantime trying to hold others in reserve or just being patient and letting time go by. Plus I have a historical (read histerical) commission to deal with so once again I have little control as they let me know what I CAN OR CAN NOT DO. GRRRRRR...... And my "certificate of appropriateness" now extended will expire in a few months. Appropriateness. Can you believe?
Anyway, I was just lying here thinking I really brought all this on myself as I should never have attempted this renovation. I could just kick myself now. BUT on the positive side, I know I made the right decision for DH in moving us here as he has loved it so much and I've given him the past two years he could never have experienced in the D.C. metropolitan area we moved from. I'm feeling better aft ter my big whine here.
Warm fuzzies: I'm lying in bed with my netbook (little laptop) watching t.v. next to my two adorable little Bichons Mika and Charlie curledup next to me. It's the little moments I live for now. Thanks you guys are great.
Come on the rest of you - I know there's more pent up pity parties just waiting to spew - let em rip!
Wow, Terry, Mary, Susan, Phranque, it never rains but it pours. Your stories make me ashamed of feeling sorry for myself because dh is being a little ornery this morning. I feel so bad about your books, Terry. That must be heart-breaking.
I guess you've all got me convinced we better stay in this house for the time being: even though it's too big, too hard to heat, huge yard, dh won't help with it anymore. It's pretty comfortable and I'll regard the yard work as therapy for myself and what doesn't get done, doesn't get done. As far as avoiding renovations during AD care-giving -- I don't need convincing. I've always hated them (until they were finished). Luckily we did the important ones many years ago (groundfloor bedroom and bathroom, sun room added). Those were all dh's initiatives. <sigh>
Nobody's travails should ever make any of us ashamed for feeling sorry for ourselves. That has happened to me so many nights. I'll come on here and get so involved reading all the posts and feel overwhelmed with sadness and empathy and then I jjust can't post my own stuff. There's no comparison. When something sucks, it sucks. The little, the big, the bad and the ugly. There's always someone in worse shape, that doesn't really lessen the pain.
Yeah, Jeannette, frankly I wouldn't recommend renovating. And this particular renovation while it was happening I thought was a good thing. We weren't living here but a couple blocks away. It consumed me so gave me another purpose in life and at first it seemed to be going well. A little compromise here, another there, but I wanted to stop being the control freak I usually am and have a "good process" and friendly atmosphere here. HA! Was I naive. This is a small town of 2300 and I didn't know how to live in a small town, didn't want to make enemies, one carpenter was married to someone I thought was becoming a friend. I had misplaced loyalties. Wouldn't fire anyone and got so caught up in getting it done for a self imposed deadline of my son, his wife and new baby coming to visit. I so wanted us all in this new house and from what doctor had told me DH didn't have that long to appreciate it. It went ugly, one guy was psycho, even told me off in the ugliest possible manner, telling me I had it made, DH wasn't that bad, "He's driving, isn't it? How bad could he be?" I was lied to and really taken advantage of. I hopefully have had SUCKER now removed from my forehead where it was obviously imprinted. Anyway, I ended the reno early with work still to be done as they were damaging my house and I ended up having to have some things ripped out and redone, and am still listening to other builders come in aghast at the quality of work. THERE! Got that out of my system.
But any time you do a reno you are opening a can of worms. You never know. And this was a complete gut job. New wiring, new framing, new plumbing, everything in a house built in 1890. Way too small at 1200 sq. ft. and space is now my big problem - I thought for sure we needed to be in a smaller house for this journey so I could hear him and keep track of him. Plus he has terrible hearing problems and I didn't want to be yelling all the time which I am anyway. So now we're on top of each other, it drives me crazy, no privacy, and my dream house has become my nightmare house. GRATITUDE NOTE: I'm grateful the roof doesn't leak. I had a great roofer.
I still wait this morning for news about carpenter. My "life coach" who I saw again on an emergency session last week said I should just assume he will do it and proceed with that positive thought and not try to line up back up plans. Yeah, so I sit here fearful I am letting time go by and wishing I had the skills to do this myself.
Sheez....sorry about this. I'm nearly finished with updating on my siutation with this house. I really needed to tell it. I am grateful for anyone who could hang in long enough to read it all.
Terry, what you said is absolutely true. When something sucks, it sucks. Intellectually we know there are folks worse off and we appreciate the fact things aren't worse for us. Emotionally we know that compared to what is/used to be our norm, our own stuff sucks. It's our stuff we're dealing with day in, day out, not someone else's who is worse off. On the other hand, a half empty glass really is also half full - usually. (-: I am truly grateful not to be going through a renovation. It sounds like a real nightmare. I hope things settle down soon.
Wow, this thread is exhausting just reading about the problems everyone is having. I, too, have been on a nonstop journey of renovations and maintenance since my husband's dx 4 yrs ago. Thankfully, for the most part, it has been a positive experience, but it sure does add to the "workload". It does seem to be that things are breaking down around here much more often these days. In the last few months: something fried inside 11 yr old TV--dead now; brand new range--tried out the self-clean feature 1st time--dead now; part went bad in track--no kitchen lights in ceiling would work; part bad in 4 yr old fridge, no icemaker and dispenser operation; suddenly, after 20 plus yrs, the sediment filter on our water system needs to be changed every 2 mos instead of 6 mos. None of these things are earth shattering, however, and I'm trying to develop a new attitude. I'm not replacing the TV right away--perhaps we don't need it. Not fixing the fridge--we can make ice cubes the old fashioned way. I think sometimes technology has a way of increasing our expectations, when it may be just as easy to do it the old way and not have so many gadgets to maintain!
So sorry to hear about everyone's troubles--hoping things will be better soon.
Marilyn, welcome to the world of ice cube trays. I posted on another thread that a visiting child had never seen them and thought I was Martha Stewart because I could make ice - takes a lot of talent, huh? :)
When I bought our new fridge I opted OUT of the ice maker. Just one more energy wasting thing to worry about. I would have skipped the dishwasher but I was informed you waste more water by hand washing. I have never learned to properly load a dishwasher and it seems I'm always upset when I'm loading the dang thing and have to resist the urge to slam the door on it which just rattles everything and sets the darks to barking.
OK< somebody put all the states/countries we are from and Joan can pick one from a hat, Then we will all move there and built a gated community for ouselves. We can work out the details as we go, but RESPITE will be a Priority. Any ideas? Heck with all we spend on Co-pays, we could afford a private Neurologist and Primary Care Dr.
Montana is heaven. not too hot, not too cold. only some snow, no floods, hurricanes and tornados or big spiders. Only a little hail. usually no rattlesnakes or bears in town. Only deer and moose from time to time.
I lived in the San Francisco Bay area for 22 years. That was heaven on earth. Wonderful climate, neither too hot nor too cold. NO CHIGGERS. VERY EXPENSIVE though. Ah, the coast, or Napa, Carmel, Mendicino, Lake Tahoe, Yosemite!
Mary..I lived in Bozeman, MT years ago..house had a 120 Ft driveway that I had to shovel to clear snow...on the 4th of July!! Hated that town..used to be called Boozeville for all the bars..and one grocery store. Quite the different scene now. Since when is Montana NOT cold?My sister still lives in Great Falls..she thinks it gets cold there.
TJ - I know the way to San Jose! LOL I live in So Cal, but I love the bay area as well. Since I'm a native, we say "earthquakes shmearthquakes" they only last a minute! Glad you're feeling better my friend!