The repetitious questions and comments. Sometimes I think I'll go mad. Also, he doesn't want to take a bath or shampoo. I have to be really creative to get him into the shower. He doesn't shave but once every 4-5 days. He'd wear the same clothes (underwear included) unless I get reqlly quick and take them from him.
My #1 stress is the loneliness, no one to talk to. No one realizes how it is with DH. They see him for 10 or 20 minutes, he repeats stories he has told a million times. When I tried to tell my best friend how it is, she started telling me about her problems with her hip. He sleeps in his recliner on and off all day. He sleeps at night. I go out and do all the errands, groceries, bank, drug store, gas. I do everything he ever did and everything I ever did. I asked him to go to a funeral with me for the husband of a friend. He looked at me like he could not figure out why I would want that. He did not go. When I came home he asked if I had fun. I got stuck in a traffic jam yesterday after going to Costco and all that entails. He was upset that I took to long. Thanks for listening.
I went on line to check up on that widow's benefit. It will slightly more than double my income. If there is anything left of the IRAs when this is done, I might just be able to stay here in this house after all. WOW. I really would like to be able to stay for a while if I can.
The reason his benefit is more than twice mine is twofold. My Advantage plan is being paid for out of my check. His Medicare supplement is not. Also, he gets more than twice the annual raises I get. Over time that means that my check looks like it is shrinking when compared to his.
My number one cause of stress is finances. That is closely followed by concerns about my own health. I wonder daily how much longer I will be able to keep DH at home. The third cause of stress is all the other medical problems DH has, and wondering how to get all the care he needs for everything.
The other day I was thinking about how there are nurse practitioners who work with people with diabetes, or allergies, or other conditions, to give them help and information that doctors don’t have time to provide. Wouldn’t it be nice if they had that for families dealing with dementia?
Jan K - I honestly believe that we could handle anything, including all the AD stuff, if we weren't stressed about finances. No matter what is happening emotionally and physically related to having a spouse with Alzheimer's Disease, it is compounded millions of times over when you are constantly worrying about where the money will come from to pay the mortgage and bills. Finances are the deal breaker. No doubt about it.
If you are heartbroken to the core, physically exhausted from caregiving, and stressed to the limit from the emotional, mental, and physical toll having a spouse with AD causes, but you can get up every day and know that there is money to pay every bill and buy the groceries; that money is not a concern, then your stress level is automatically reduced.
Finances are a major bugaboo. Went through this once when DH had his mental breakdown. Lose 1/3 of income in a blink, while raising a child and buying a home, and fielding 2/3 of medical costs previously covered. Things got so bad we had to use powdered milk---BAD. Rsolved we'd never get to that point again. So far, we haven't. But the economy scares me.
Carosi, I used powdered milk when my four kids were little. I mixed it with whole milk. It was fine if it was cold. the kids drank lots and lots of milk. They complain about it to this day. Now they drink lots of milk, too, but it is skim from the grocery store.
1. Finances 2. Having a very limited social life, no travel 3. The need to have eyes in the back of my head 24/7 4. The "absence" of our grown children in our lives
#1 - the unknowns: will it progress from MCI to AD? Will I find a job or will our unemployment be extended when it ends next month? My DIL telling hb to play with kids while you still know who they are (so insensitive).
I have never heard anyone mention instant messaging as a way to communicate. I would be lost without it. When I was on AOL I had lots of friends I chatted with. Now I use Windows Live Messenger and only chat with my sisters and one brother. It is usually just a few minutes of chatting then they have to return to work, but beats all silence. I am fortunate in that my oldest sister is here (we are parked in her yard) and my son's family rents her apartment. What has always bugged me is my hb will sit in the house and chat with her for a long time, tell her things like his feelings and fears that he should be sharing with me. But then, he never has done that.
Six months ago, I would have said "poop patrol" and worrying about the in-between time, when the aide leaves and I'm still at work or on the way home, and trying to get him to lie down when he was wandering constantly.
Now, he's in a NH, unable to walk, can barely talk, and I would say it's the loneliness, worrying about raising 3 boys alone, finances, as I buy a house and worry about job layoffs, and did I mention loneliness??!?
And then there's the not knowing why he's deteriorated soooo rapidly over the past year, whether it's really AD or something else, whether it's genetic and our boys could inherit it (unlikely since no one in DH's family is known to have had dementia, but still, no one knows.)
Worrying about how much I'm going to have to contribute to paying for the NH (Medicaid is paying most of it, but I keep getting notices, adjusting my Patient Pay amount, which started around $89 and now went up to over $500! aaaaargh!!) I have to go to a hearing to try to get the amount down.
Thanks for starting this thread. Very therapeutic!
kelly, and other newbies, you might want to read the thread about sex and young wives (or something like that and invest in a appliance) I will bring it to the top for everybody. (I tried to cancel this but was unable too. Hope I don't offend anyone. Just thought it was time it was rotated to the top. Appologies)
my father used to go visit his slightly older sister and talk and talk to her. My grandmother, who lived with us, was jealous because he wasn't talking to HER much: her daughter was ill and I know he needed a break. My husband never talked to me much about how he felt about things, still doesn't; I think he pretty much assumed (long before AD) that I KNEW what he felt.
#1 is definitely finances #2 having to take care of almost everything around the house yourself - we lost a huge douglas fir yesterday to a snow storm, so now I have to figure out how to get that cut up and hauled off w/o spending a ton of money #3 lonliness of not having your "best friend" anymore to have a meaningful conversation with and knowing it is only going to get worse #4 frustration in family/friends that say "but he LOOKS fine"
My husband is "only" in stage 4, so I know the real stress is yet to come!
Waking up each morning and realizing this is real life and not a nightmare. I've lost the man I waited so long to find, I won't have the beautiful retirement we planned. Our social life is gone, relatives are ignorant, I'm tired, overweight, stressed and scared. I guess that's it..............#1= SCARED, scared of today, tomorrow, the future without him.
Lots of stress but the main one currently is sleep deprivation. Mt DH gets up 2-3 times a night to either go to the bathroom or wander around. I get up with him because I'm afraid he'll pee on the floor or something. Last night I completely lost it...a primal scream following by weeping. I never do anything like that in front of him. I figured he'd forget about it by morning but I'm not sure. Today he told me he thought he should get a job. That almost made me laugh. Would his boss help him wipe his butt?!
My DH gets up to the bathroom usually around 3 or 4 a.m. He is unbelieveably quiet trying to not wake me. This morning he had stripped and took a sponge bath because he thought he had had a bowel movement but actually did not. I helped him get dressed for the day and tucked him in my bed and he slept 4 more hours and I kept the light on and played with my laptop. I can't go back to sleep.
DH woke me at 1:30 AM taking a shower. That's good and bad news...since he hates to bathe and it's a huge argument every time I insist. Of course, I got out of bed and went to check on him. He was rubbing my body lotion all through his hair. I use it all over ME when my skin is wet and it feels soooooooooooo good. NOT good for his hair though. I get the shampoo and have to get into the shower with him and scrub the oily lotion out of his hair, and then he finished up. As soon as he was safely out of the shower, I had changed my gown and headed back to bed. Next thing I know, he is standing next to the bed with his undershirt and two golf shirts on, one on top of the other. It was almost 3:00 AM by the time I had him re-dressed for bed and taken the dog out for a walk since he was wide awake, and the lights were out and we were in horizontal positions again. Instantly, he dropped off to sleep, the dog was asleep, and I was wide awake. Wish we knew when the others were up...we could IM back and forth with other nonsense. ..........and so it goes.
I guess I'm lucky in being able to go back to sleep pretty easily -- usually within 15 minutes or so -- because I sometimes get called on for help with potty trips as often as every couple of hours all night long. That's not typical -- sometimes maybe only once or twice -- maybe three times would be typical. I'm usually banging on my computer or watching TV (or more likely dozing in my recliner in front of the TV) the first time I hear her call via the baby monitor, and after I get in bed she pokes me to wake me up since I've taken off my hearing aids for the night. But I don't consider this stressful -- just something that I have to do because she can't manage it by herself. Well, maybe it's a little stressful if I'm also about to pop to pee when she calls me, and I have to wait until she finishes -- especially if she converts the pee call to a longer poop session!
Mine is not knowing if a decline is happening. I want to stay 1 step ahead of ADLO progression or decline. My ADLO is so involved in personal grooming ie make up pantyhose fingernails (well I answered my own question because she no longer cares about her clothing variety, wears same top each day) I style her hair but think I will let her do that again so she stays active. I worry how to financially manage her expensive habits, pantyhose, macys make up. I worry if I take her to buy pantyhose and she forgets to wear that is 60.00 out the window. She removes and throws out the packaging asap.
Geez! I have never ever paid $60 for hose. Even Hanes Sheer Elegance are under $10. Sprite, ever hear of Leggs? come in a round plastic "egg"... They have a sheer stocking that' runs about $3.99. They are great for 'everyday"... or MOST days... mmm..most ALL THE TIME! :-) Funny how be buy certain brands out of habit?? I've always bought Hanes, just because they wre easy to find and I knew exactly the ones I wanted. It's not easy for a man to think Super Sheer, Control Top, Reinforced Toe or Toeless or Sheer Toe, Plus )(the Color).... Town Taupe/Barely There/Barely Black etc. etc. . All in one tiny package! Only women can rush in, grab the right one and be outta there in a few minutes... Power shopping!
I forget where I read this, Hildann. Maybe Bigtree Murphy. When asked "Does he know who he is?" ... she replied, "He knows he is loved."
I just do what I do. I have melt downs like everyone but not frequently.
My last big one was the episode when our little dog was running across one busy highway and my dear husband was stuck in the midst of another one (a big "Y" intersection during 5:00 PM traffic). Patience??? No my dear, I COULD NOT BREATHE! That story was posted a month or so ago. What a horrible experience that was!
What we are taught by AD specialists is the importance of "DIVERTING". She is obsessing about shopping and you are being so sweet to take her. If you can manage to divert her attention from this at the moment, perhaps one trip will be avoided. Then TWO trips, etc.
I recently went through drawers and a stocking container box in the closet and organized everything by shade, etc. I was shocked at how many good pair of stockings I have. I may not have to buy more for years. Reorganizing drawers may be something she could do with your supervision. She may have the same revelation! Put nice shachet packets in the drawers and it's so nice to go back and open the perfectly organized, sweet smelling lingerie drawers. Would she do this?? Lots easier than mall shopping.
Joan, as bad as poop patrol would be, I think I could handle it better than what you're going through. Would more meds help? Does this stage of the disease go on forever or does this phase end and a more manageable phase start? Does anybody know?
i would have Sid so over the top zonked out all day. open his mouth he'd get a candy with another respiradol...haha..til he got over those 'issues'...i remember how horrible it is. poor joan. so sorry.! divvi
I agree with Joan...the anger and hatred never stops, and it adds to the defeat of trying to be a good caregiver. My dw can bash me for hours, making me feel like a worse person than Hitler....worse is that she will not take any medication that will make her pleasant.
Phranque, you can get meds that you can mix in her food or drink. Unfortunately, many have resorted to doing that.
Joan, since the others have said it first, I also agree. Sid is abusing you! Words are just as bad as physical confrontations. Women cannot live in a house where they are abused. If he was physical instead of verbal, wouldn't you have asked for help by now. He may NEVER become incontinent - so that's not the issue. Your sprit can be forever broken if you allow him to contine to batter you day and night. Bless your sweet heart. You MUST get him medicated, even if it means he will be less active. He's not going to get better! (All of these are the words you preach to us!!!) Get this issue out in the open. Put a tape recorder on the kitchen table and let him know the next time, you're going to push "record" and take the tape to the doctor! That way, he can't "sue you" for recording his words without his knowledge. :-) His "reason button" is broken.. but you need to prove your case to the doc.
Grab that oxygen mask FIRST....aren't those YOUR words?? As I said in another post, it is sooooooooooooooo much easier to give advice than to follow good sound advice others give me.
I agree about the verbal abuse and Joan and Phranque both of you are suffering with it. I have seen verbal abuse in public and it just about kills me to keep my mouth shut instead of butting in. My father-in-law was a verbal abuser to MIL. My DH verbal abused me at times but not real bad like his father. My ex-son in law was verbal abusive to his wife and children and they will forever pay for it.
I urge both of you to medicate them right away. Whatever needs to be done with or without their knowledge. I rank verbal abuse right up with physical abuse. If their reason button is broken they cannot be expected to agree they are abusing someone.
I am sure others on this site are also victims of verbal abuse and maybe even physical abuse. It is world-wide a pretty common occurance and our little group are not going to be exempt.
Please, all of you suffering because of this issue, think of your own health and also having the ability and health to take care of them in the coming years. You may just need to do it temp. and maybe they will move out of that stage.
Love and Hugs to all of you. Please don't be offended. We are worried about you.
i dont think it lasts forever but even a small time is too much. i had my DH asleep most of the day with the zyprexa and it was the only way for me to survive without placing him during that time. i agree with imohr and nancy! phranque i can just 'see' me taking what you are going thru or joan for that fact. Not! you cant imagine its good for them to be that hostile and feel that way. i looked at it as a means of helping them stay relaxed and calm and not so emotionally disturbed or excited. their BP can alter just like ours all day long if they are aggitated and that isnt good for them either. sometimes you just bite the bullet and say this is what has to happen or else. you give them the meds with autorization from their drs- both of the physical/mental health are on the line here -divvi
The update and latest on the anger issue is the Wed/Thur. blog. It is up on the home page now. It did not get written and posted until late this afternoon. After you read it, you'll know why.
joang, I am so sorry you have to go through this. Life is complicated enough without all the added stress of caregiving. I wish I could wave a magic want and make everything right but I can't. I hope you can find some doable solution to your situation.
As a childhood overcomer of physical, verbal and sexual abuse, IMO the verbal abuse is the hardest to overcome - it goes to the core of our being. Profanity will still trigger me if caught unaware. My dad was a dry alcoholic. Knowing why he was the way he was does not change the pain nor damage it did to my thinking. (he was not the sexual abuser)
So ladies and gentlemen - you need to stop the verbal abuse. Even if you can logically say it is the disease, it still gets into our heart, mind and emotions. Depending on how you felt about yourself before this started, it can do much long lasting damage to self esteem. Make it harder to regroup after they are gone. So, please protect yourselves now from the verbal abuse.
Joan............. read and re-read Charlotte's last paragraph. This is what I was trying to tell you. Verbal abuse is every bit as bad as being physically abused. Fact is I believe verbal abuse is worse!..A bruise heals....the words you hear last forever in your mind and heart.
1. finances 2. Constantly battling the healthcare and LTC companies to pay claims 3. Not knowing what will happen today, tomorrow 4. Fear of not having enough resources for me when this ends 5. Having to do it all 6. Losing him
My number #1 varies from day to day just like this disease! Of course, finances and what I am really up against and how I will survive after this has to be a major concern. Right now, being sleep deprived seems to take more prominence as I am SO exhausted!! ALL of the above you all submitted are things we can all seem to relate to mostly, though in varying degrees! The home health RN told me today it looked like things were progressing faster than he thought