Elaine, you are exactly right. That's why I want other people to see what I see. Because I take it as criticism of me for overreacting. Someone said that he didn't think anything was wrong with DH, that he thought both of us were exaggerating. I wish I hadn't been so stunned that I couldn't think of any appropriate reply - like what about the neuropsychologist, the neurologist, and the person who evaluated the MRI? Were they exaggerating too?
We have been at the Rv park since the 3rd now and enjoying the relaxing. Our son and family came up Wednesday and have been camping out in a tent next to us. It has been enjoyable but tiring because we don't get the sleep we are use to. I am constantly going with them- - hb sits home watching TV much of the time. This evening grandson, age 2, would stand outside the door yelling 'grandpa, come here' over and over. He wanted to show grandpa the wook he has been doing (he plays with the chains and padlock on the car dolly which has been entertaining him for hours and hours) or he wants grandpa to come play baseeball with him. They were going to leave today, but decided to stay, then they were going to leave tomorrow but may stay until Sunday. We had campfires the last two nights. Tonight we started the fires at 6 cause DIL wanted to roast hot dogs and brats and someone asked if we were aware it was hot out!! yes, we knew it was still 90 degrees out but this is camping!! There are lots of kids in the park, all with their grandparents. We usually avoid the parks during the summer, so it is strange, but nice to see kids around.
Charlotte, I am so glad you are enjoying family time. I miss seeing my grandchildren since we moved back to North Alabama. Hey, I miss their parents also.
This morning was not a good morning, in fact the day has been a downer. In our other parks and use to be this one, they had no problem if our cat got out since there are resident stray cats in the park. She would stay under the MH so we thought no problem. Evidently someone complained so we had to keep her in. We were doing that but with everyone going in and out it was much less stressful to not worry about her. This morning I was in the bathroom when son knocked on door. HB was right there by the bathroom door (remember the MH is small, not like a house) and I told him to not unlock the door until the cat was locked in the bedroom - told him twice. What did he do - went right to the door and opened it. She almost got out and I went ballistic. Son tried to take the blame but I said no, it was his dad's fault cause I had just told him not to unlock the door. The kids decided to leave which was a good idea for many reasons: hb needed some quiet, I needed quiet, they had races at the fairgrounds just a few blocks away so kids would not be able to sleep and then fireworks. Son has problems with fireworks from his military years. The rest of the day it was as if hb had no memory at all. I guess he was trying so hard while they were here, he needed to let down. Hopefully after a good night sleep tomorrow will be better.
Must admit though, within a couple hours I was missing the little ones - they were so entertaining. and having other adults to take to. Oh well.
Today was 97 - way too hot. The a/c could only get it down to 88 in the MH at the peak of the heat. Tomorrow is suppose to be the same. At least we do not have the humidity that those east of the Rockies have.
VERY nice yesterday and last night. Almost like the advent of Fall. Short lived, though. Had all the windows open since Saturday and when I got home from church this afternoon.....it was 88 in my upstairs bedroom! ENOUGH! Crank up the A/C.
I've had my canary on the front porch for the past week. He loves it there, up high and in a breeze. Have sold TWO ponies off the farm in the past couple of weeks. Delivering one to Pennsylvania Tuesday. LOOOOONG drive. Somehow, I look around and still have FIVE (two are just 'yard ornaments' because of joint conditions).
VERY lazy today. Just want to stay inside and do NOTHING. Just find some peace. Nothing's been resolved for me...still in a place of limbo. And, I'm tired of people asking me if I'm going to stay here. Where ELSE should I go???!!! Right.
Went to Sunday School this morning...do you know what BOOMM means when you're texting someone? (Bored Out of My Mind). Learned some more of those too. Just ask. I'm now on top of it. Have a nice day!
Continued to just vegetate today. We slept in until 10, and he went back for a nap about an hour ago. He acts kind of depressed so could be just the come down of all the activity of when the kids were here. Usually takes him 2 or 3 days to regroup when he has had a busy day. Having it so hot doesn't make it easy cause he has been wanting to walk. We tried at noon when it was still about 84. Fortunately the high today was only 88 but still hot when sitting in a small Rv with the sun beating down on you. It is going down so should be cooking off soon. Cat seems depressed too cause she can't go out.
I'm UP! Early and ready to roll! I must be feeling better. It shows up in ways like this....getting up with a purpose and actually happy about it. Now, if I weren't in so much pain all the time, I'd be my dynamo self again. Got my arm and left hand all bandaged up (for support) so I can spend the day outdoors. I have to work with the little brood mare I'm taking to Pennsylvania in the morning. Bathing, clipping, practicing loading in the trailer...all the fun and messy stuff. I'm going to buy her a new pink halter and lead-line, too. She's a witch, but still dear to me....she's been a good mom and given me some pretty babies to work with. Guess I've been lucky with her after all. Going to the vet this morning first, right after my coffee is finished. One of my mares has a stone bruise and suffers from arthritis and her discomfort is kicking up this week. Need to get some "Bute"....kind of like Ibuprofen for horses. I have to get the fancy, flavored stuff to sprinkle in her food. I can't disguise the disgusting, bitter, plain crushed up pills in her breakfast any longer or give her the paste in her mouth...she's on to me that way. These things are like kids. And, unlike my cats or dogs, I can't just grab 'em, sit on 'em, MAKE the pill go down.
Anyhow, that's the plan for the whole day. I'll post a picture on my facebook page, I'm sure, at days end! I AM proud of her (a P.O.A.), I just don't get along with her and need to move some horses off of here anyway. Have a good day...hopefully uneventful and SAFE. Love, Jen
Looking for lost things. My most unfavorite thing to do. Plus my personality disintegrates quickly especially as there is so much I've organized only to have DH come around behind me and DISORGANIZE. So goes our basement where I was looking for the Installation CDrom for his laptop so computer guy could fix it. What a mess and discovered a leak so water on the floor ruining some of my stuff....and so it goes. Going to have to ask computer fixer to see what he can do without it. Heat is lessening just a tad. Bring on October!
Oh terry! you are living my life!! Lost things.....GRRRR! & sometimes he thinks that I took them. Right now he is looking for a bracelet that our grandson made. Actually he has 2 of them & they are nowhere to be found. However I'm sure in the next day or two I will see him wearing them again!
Today ended search for lost disk and computer guy fixing without it. Feeling down so giving myself credit for accomplishing (the phone call) one thing. Tonight we take a friend out to dinner for her 60th birthday. DH loves going out to eat and it's one of his favorite restaurants. I did make a phone call to the woman who tried getting an Alzheimer's caregivers support group going in town. I talked with her a couple years ago and no one was attending. Left message to determine if that's still the case. Ah ha! Just spied a red headed woodpecker out my window. Thank god for the birds!
Another beautiful day in Paradise (Maine), but we desparately need rain. Last night DW and I slept for 12 hours!!!! I wonder how long she would stay in bed if I didn't get her up. I'm having a minor, but annoying, problem now. She has a sore on the bridge of her nose. She keeps picking at it and making it bleed. I have tried putting a band-aid on, but she keeps pulling it off (it is off and in her hand now). I don't know what else to do, but it won't heal unless I can keep her from picking at it.
Oh Marsh, it's like when the kids were little, how to keep them from picking at scabs and such. How about that new Liquid Bandage?? I've never tried it, Anyone???
Started painting my livingroom today. Big job, small steps. My emotions are mostly upbeat, sometimes more than others. Oh well, one day at a time, one step at a time.
Marsh is right about the rain, boy do we need it. This has been the hotest summer on record for Maine.
Marsh-you can try the thin duoderm patch cut as small as possible. Your wife may not even realize she has it on. CVS or Walgreens should carry the product, or at least one similar.
I use the liquid bandage and the duoderm patch on DH. He's forever scratching himself on something and his skin is so thin now, bit always bleeds. He could use a bandaid and wouldn't pull on it, but even he likes the liquid bandaid better.
The hospice nurse was just here to see DW. She gave me "tegaderm", a thin plastic wound cover. It's hard to be sure it is still on unless you get the light just right, plus I can still see the sore, so know if it is healing, etc.
Well I have a new one (or do I?) Today while my DH & I were driving around it was sunny out so he had his sunglasses on. So after a while he opened the glove compartment & got out another pair of sunglasses. I told him that he didn't need another pair of sunglasses because he already had a pair on. He said, 'Oh, I didn't even see them." He did it again about ten minutes later. Both times he almost put them on over the ones he already had on (or at least he tried to). Talk about layering!
Marsh, if you haven't used the tegaderm patch (and it IS wonderful) dont be surprised if tomorrow it begins to look like it is blistering over the sore. That's normal...and just leave it alone. My DH fell and suffered a deep tear in his thin skin on his forearm... We used a big patch of that material on it and after it looked " nasty and awful!!!!!!!!!!!!" for about 4 days, it healed beautifully.
Morning all, nice day here in Maine. Feeling tired, did a bit of painting, finally, in my livingroom. Lot of work to be done, but it will be the end of the remnents of the mold disaster! My therapist reminds me that its ok to go slow :o) Laughing out loud at Diego's new kitten. He is full of beans every day. Watching him discover his new world is a constant source of amusement :o)
Okay, been up since five something this morning. A lot of worry driven energy, I guess. After all this time (the wheels seem to just turn SOOOOO slowly lately), my attorney has scheduled a meeting with me. I have so many questions about "what am I supposed to do NOW?". Just going to bring along my folder of THOUSANDS of dollars of John's unpaid bills (unpayable by ME!) and a list of all my questions I've had, death certificates, etc. Wonder what this meeting IS about since he called for it to take place today. Probably not any good news. Probably wants me to file for bankruptcy or something equally awful and ruinous. Well, I've been in too good of a mood lately...unnatural, really. Told my parents last night that I was just fine....just waiting for the next boot to drop. Then laughed nervously. I've got to leave in a few minutes, so I must run. Wish me good things, finally. At least, no more bad news. Later, Jen.
Beautiful day here in NW IN. I've been trimming, weed whacking, weeding this a.m. In to heat soup for hb. I asked him if he'd like to help by using the blower to clear driveway of grass. Yes, he wanted to. I brought out blower, plugged it in and told him it was ready. He disconnected it, took it in the house. Got another cord. Then said the blower didn't work. I looked for it and couldn't find it where I'd put it. Went in the house, and there it was. :) I connected it again, pushed the button, and whoosh! Showed him again how to use it, and he did the job, unplugged the blower and took it into the kitchen. Now, I'll put it in the garage, rewind the cord, finish my weed whacking job. It would be easier not to try to involve him in helping with anything. What I'd really like is a lawn service to take full responsibility for trees and yard.
Zibby I know exactly what you mean about not trying to involve your DH in helping. We are moving tomorrow and I gave DH a Swiffer duster to dust the furniture. He did the coffee table and then started on the wall unit. Next thing I know he is in the kitchen dusting cupboards that I cleaned two days ago! He had only done half of the wall unit so I had to tell him which shelves he hadn't done. It would have been quicker and easier to do it myself. My patience is really thin with all that has gone on with this move and of course DH can't see where there is any stress involved. Maybe AD isn't all bad for some people!!!!!!
A really nice cool, rainy day here in KY today. DH is doing good despite the weather and can't get outside.
Just got an e-mail regarding the ride to Washington to ask for 2 billion$ in research funding and to provide more medicare reimbursement to increase the detection and diagnosis of ALZ and other dementias. Maybe I'm naive, and I have no problem with this generally speaking. HOWEVER: What about more funding for those here on this site and the millions of others who are living through it NOW, who are facing bankruptcy, huge medical bills,foreclosure, no money for respite for themselves or home care for their LO, having to go to food banks for food and clothing- when we/they have worked all our lives and paid into the system, only to be forgotten in the end. I guess I'm on my soapbox this afternoon and I don't mean to insult anyone or belittle the ride across America, but I sometimes think priorities are misplaced.
I've been on my soapbox all evening... to my neighbors. Got to the lawyer's. He answered some of my questions. I get 255 dollars SS benefits. Period. Any other benefits will be available to me when I arrive at age 60. IF S.S. is still in place at that time. Otherwise, NADA. John provided NOTHING for me in case he pre-deceased me. NADA. This is a man who made MILLIONS, seriously. Gave it away, spent all he made, and I thought he was providing for me because he SAID he was. So sad. I will never marry again. If I EVER entertain the idea again, I will ask "show me the insurance policy, show me the long term care insurance policy...etc." Told my neighbor that I will NEVER marry again. NEVER. Even with pre-nups, there can be legal hang-ups, litigation over property. I own my farm, have no huge debts. Just no income right now. WHAT the hell am I supposed to do now? My husband NEVER thought about me....I DON'T CARE about whether he was sick then or not!!!!! I don't care. I told my neighbor that if I become "involved" with someone black, white, hispanic, indian, asian, or other, male or female....don't be concerned. Just, God Bless me if I find someone to love AT ALL. It's hard enough. Discussed a small annuity that I am benificiary of and agreed that it hasn't been managed well over the years and that I need to talk with a financial advisor (even for such a small amount).Social Security office as mentioned and the gal there asked me if I'd talked to Social Services.....I informed her that I owned my farm and so, I'm not eligible for any "help". They want you to be ready to enter the homeless shelter before you're eligible for any benefits. Not that I'm complaining. Some folks have NOTHING. I know that. It's just that....you're talking to the "rich doctor's wife" here. that's been LIED to all these years and given her LIFE and LOVE to this husband and children for 28 YEARS!!!!!
Please don't blame God for your canary dying. It's could have been the weather, and , birds are suseptible to the most minute irritants in the air, insecticides, etc., and sometimes, they just die. Sometime, they can be scared to death. God is a loving Father , and I believe with all my heart that He would not simply kill your canary to make your life any sadder. I'd look for other causes, myself. I'm so sorry.
well here in our area the sun was actually out for the third day before afternoon if at all. otherwise it has been a numb kind of day for me after the meeting with the elder care lawyer yesterday when I was told after looking over our trust and statements that we are too well off to be able to get any kind of assistance..and that for me to protect my assets which is my inheritance from my folks the method we should consider is the big D word..have been referred to a family law attorney...to see if there is some other way.
I just hate this disease..and the beauracratic govt that makes things so hard for us but by golly we gotta ship all kinds of aid all over this flipping world through doctors without boarders or $$$$ to typhoon countries where the population hates us..yeah gotta do that..but when it comes to the folks at home who pay bloody high taxes...well we can go hang. Yeah I am bitter and angry..and especially angry a the govt who says my DH who served 33 years+, two tours in Viet Nam and exposed to AO, is 80% disabled and not able to work at anything and now has AD is too well off for VA Aid and Assistance...just flipping great.
We are out on the Washington Coast now. The WA coast is not near as pretty as the Oregon Coast, but it is where our membership park is. The weather is overcast and cool. The high today was suppose to be 55 but it made it to 60. While the sun was brightening up the sky behind the clouds we took a walk on the beach for about 2 hours. I am sure we both will be stiff by evening (already stiffing up but took my valerian root hoping it will help). My hb has never liked to walk barefoot, even in sand. He says it hurts his tender feet. The only place I saw him go barefoot and not complain was in the soft, white sand at Panama City, FL. It truly is like powder sugar and so happy the oil did not ruin it. I love to go barefoot - the sand feels so good.
The wi-fi here is really slow. I think my cell phone is almost as fast!!! Being overcast can be depressing but I will try not to let it get to me. Such a change from the heat we had the last week.
By choice I worked hard all my life. I chose to have a career so that at any time I could be self suficient. My husband and I chose to invest heavily in LTC. It was very expensive and the money could have been spent in more enjoyable things-again-a choice. We will be leaving our children a legacy of knowing how to be self sufficient and funds for their own future.
Jen, I hear your frustration. It sounds like bankrupcy is your only option without income. Do you have alot of land? Perhaps sell off part of it, pay the bills and keep your home.
Mimi, I am sorry that you didn't hear any good news at the lawyer, but please be grateful that you have the funds to pay for in home care and other things that your husband may need.
We also had a really nice nest egg and did spend and invest wisely so that when my husband became too hard for me to handle I found an AD specific facility for him. It cost me a pretty penny.....around $7000/month.....he was there for three years before I brought him home.....do the math!
No, there was no free help for us.....Once I was offered a chance to get 3 hours of free "babysitting" from the Alzheimer's Association. I politely declined and told them to please offer it to someone who couldn't afford to hire anyone on their own.
Yes, my lawyer did once mention the "D" word, but with my husband's SS and his private disability policy and income from investments we made it. Now, would I like to have quarter of a million dollars back? Sure, but I am just so very grateful we had it to spend. I am doing fine emotionally and financially and doing a good job enjoying myself enough for both of us....!
I hope it all works out for you...
Jen, I am so sorry that you are having to deal with this. If nothing else, it should serve as a lesson that both spouses should be "hands on" with all the financial stuff with or without a dementing illness being involved.
Jen---you've heard of house sitting but have you ever heard of "farm sitting"? I read an article recently about someone who actually has a farm sitting business. I think she called the business: The Farm Nanny. It began when friends asked her to farm sit while they were away on holiday. They knew she had hands on farm experience and would provide good care of their animals. That led to another job and soon word of mouth brought in more business and she has been able to form a small business doing something she loves. I will see if I can find the article----it was in a magazine----and send you any other details.
Good Morning, It is moving day at last, I thought it would never get here! This will be my last post until sometime on Monday. I've had to change servers because the one I have now doesn't have service where we are moving. The new one will set everything up between 1 and 5 Monday afternoon. Being a morning person I am not fond of afternoon appointments especially when they don't give a specific time. Oh,well what else can be dragged out. I will check in the first chance I get, in the meantime I hope the next few days are good days for you care givers and your LO's. Take care.
Mimi--After rereading your posts, I understand your frustration with the government if your husband's illness was caused by his military service. It's a shame he didn't have LTC insurance, but I guess for him to qualify for that it would have depended on the timing of when his disability was diagnosed. However, I do agree with what others have said--be thankful that you have the funds to hire help or place him if you need to. I've read posts regarding people who have divorced their spouse to preserve assets; but unless they were contemplating it before dx, I would think it would be emotionally devastating to both parties. (BTW, you should probably look into getting LTC insurance yourself, especially if your funds will be needed for your husband's care.)
Sandi--you are so right about the importance of both spouses being hands on about finances. I try to encourage other women, who leave it all up to their husbands, to get involved. However, our financial advisor (who is a woman) told me few of the wives do so--potentially, to their detriment.
Yep, I'm a loser. A lifetime wasted, that's how I feel now. And angry about it. Too much trust and admiration going on over the years. No questions asked, and when I did, it was made clear that it was none of my business. Well, I always have said...If you ca't be a good example, be a WARNING.
It has been somewhat of an eventful couple of weeks. He has progressed in the disease. He is in a lot of pain. He has been switched over from Tylenol to morphine patches. We started with 12.5 mg and are now up to 25 mg. I am not sure that is enough so will be talking with them today about a higher dosage.
Yesterday he had a small siezure. I sat with him for quite a while last night, his breathing was so labored. When I called to check on him this morning, they told me he was having trouble swallowing. I am now in wait and see mode to figure out if the change is permanent or temporary as he recovers from the seizure.
The paperwork continues. Just got an email from the water dept. requiring a death certificate to change the billing to my name. Thought it went too easily when I did it on line.