Based upon the e-mails I am receiving and some underlying issues on the message boards, I have come to the conclusion that MASSIVE STRESS is causing many of us to be extremely edgy and upset. (Duh!) So let's hear it for stress - What is your #1 stress RELATED to your spouse's Alzheimer's Disease?
Mine - Besides the finances, which is a topic in itself, my #1 stress is avoiding arguments. Everytime my husband starts an argument, which I know will lead into a full scale rage, I need to take a deep breath, not respond, and walk away. I wonder if the experts who recommend this approach realize how much it takes out of those of us who try to adhere to the advice. The advice does work, by the way. It usually prevents rages (that and Risperdal), but it stresses me into a headache and racing heart.
My number one stress, changes with the disease.... right now it would have to be the frustration and anxiety of trying to get him to eat!! Poor bugger, he thinks he is full, he thinks he just ate. *sigh. Such a challenge, such a struggle. One am not enjoying in the least! ACCCCCCK!
Hard one but right now I think it is the unknown. Not knowing if he will be able to go with me tomorrow, stay by himself at home for an hour, if he will still be continent, what if he falls and breaks a hip????????????????
My biggest stress right now is him asking the same questions over and over; not eating good and losing weight. But is still up and about! However, with arthritic knees, I'm so afraid he might fall.
mine is myoclonic jerks! i abhor them and it makes me super stressed and nervous to witness them. i feel hes in pain and nothing to do about it til it stops. or that over time they could become more violent- but on the positive side, the neurontin is doing its job to help keep them at bay..AND this wins out over poop patrol by a long shot,which used to be first of course! divvi
Joan, I don't think I feel stress as such, but something that frustrates me lots is being effectively on a 200 foot or 30 second tether (the radio range of my DW's baby monitor and/or my ability to respond to her calls promptly enough so she doesn't start to get panicky). She is so completely dependent on me for assistance with just about anything other than sleeping that I'm basically captive except for times when my son is home to relieve me. Dandelions and assorted other straggly weeds are popping up all over our lawn, and instead of being able to get out and mow them down, I'm stuck with just sitting here in the house trying to find ways to kill time. Ditto for lots of other stuff -- anything really where I'd get so involved in a project that I'd not be able to just drop it instantaneously. The more critical stuff finally gets done by working around my son's schedule, while other stuff just has to be let to slide, but the thing that really gets to me most is the time I'm forced to waste, just being "on call". So I guess that's my frustration -- being on call.
Things like answering repeated questions, the frequent potty runs, doing all the housework, etc. are things I can deal with OK -- it's the "non spouse related" things that I'm not able to do that wear on me.
Worrying about how he will fare when I take a "respite" in early July, how to arrange his care, etc. I really don't want to put him in a facility; the only one that will do it is way across the state.. and because of his physical problems that he knows how to cope with here, but wouldn't there, I fear it would really set him back.
I have approximately 1,000,000 sources of stress right now - well, maybe only three major ones. I'm to the point that I don't know what is related to my husband's MCI and what isn't. I'm going to bring up another thread when I laid them out and update it.
My #1 stress right now is that he will decide to try some new drug that arrests the disease and he stay at '12 yr old' forever. I know this sounds nasty and selfish, but there it is.
Upon reflection, it's not even 12 yr, as the 'logic' ability is way less than my kids had when they were 12. Do I sound frazzled? DH just tried to turn on the sump pump and it 'blew up.' I have no clue what's wrong, but water is NOT running into my basement and the neighbor will help me after work in an hour. AND the funny thing is that I was scheduled to go to a 'how to reduce stress' seminar at 5:30 pm. DH can be by himself and manage what he needs to during the day or for 1-2 hr evening meetings I attend. I'm about to begin laughing hysterically and roll on the floor...or burst into tears. Time for xanax I guess.
I wrote on another thread that I had been crying all afternoon for no reason. I finally took a xanax, and it's helped. If I had a sump pump blow up, I would definitely take one. Go for it, Libby!
My #1 stress is dealing with my husband's first family who are relentless in trying to get hold of his money and possessions NOW. Ad infinitum. They've never been helpful, but are now ruthless. Yes, I will be interviewed by the PhD for her study on second marriages.
My #1 stress right now is the pacing, "sundowning" whatever the heck it is. He starts to pace about an hour before I get home from work (I leave work at 4:00 and get home about 4:45) and it continues until I can physically force him into be at around 9:00 or so. He walks until he is exhausted and falling down, breathing so heavily that I fear a heart attack. Last night he was sweating so badly that it was running down his face and into his eyes. His way of dealing with that was to walk with his eyes closed. By 9:00 I can usually get him into bed and lay with him and hold him down (because he is so exhausted) until he falls asleep. By this time I am so emotionally and physically exhausted that all I want to do is sleep too.
Imohr - the Seroquel helped at first but I think his dose may need increased. I gave up on the Neurologist at WVU (all they wanted to do was put him on the psych unit and he always came out worse than he went in. I have been trying to deal with just our family doctor but he refuses to adjust the Seroquel or Namenda (not his field) so I have an appointment with a local neurologist. Couldn't get in until May 18. Hope Charlie doesn't pace him self to death before then.
My number 1 stress is worrying about what will happen to me financially once he is gone. Because of a whole bunch of decisions that I now know weren't the best ones I could have made, almost all the money is in his name and not in mine. Right now I can afford a pretty good life. But once he is gone, I'm going to be dirt poor.
1: Lonliness 2. His yellling 3. The porn he accusses me of BEING with other men 4. The on again, off again professsions of love for me. 5. His family that is nothing but greedy. Think they have his best interests in mind, but they have no idea what they've done. If they thought they'd be inheriting a huge windfall, they're in for a surprise, now. 6. Finances 7. Any future I may have
Oh Good Lord, I guess my #1 Stress is the loss of my husband, my love, my friend. #2 is Dealing with the added stress of my Mother getting older, and Dylan with his issues. The list could go on and on.
starling, maybe you would be willing to give some info about your situation and someone may could offer suggestions?? if its too private i understand totally but we'd like to help if possible..i saw miss jane posting! we know she has excellent advice on this subject..divvi
I worry too about what will happen to me financially after my husband is gone. I am 9 years younger than him (he is 59) and worry about an income if he dies before I turn 65. I would get part of his pension but that is very small. I also worry about the time I cannot leave him alone for a few hours.
My DH is not in good shape physically, his heart attack, spinal stenosis, terrible arthritis and pain. I'm stressed about which will go first, his mind or his body and what the future holds. Other than that, the stress of repeating, repeating, repeating the same questions over and over. I know this is minor compared to rage and violence. I am very thankful for what we still have.
Dazed, my DH also has severe spinal stenosis and arthritis and pain in his back along with Parkenism and the dementias. His heart and everything else is great. His back is giving out on him and I am worried he soon won't be able to ambulate. Other than that he is no ways near ready for a nh. When he can no longer help himself up and down I cannot manage him.
A light note on the repeating--I was so happy when February got here, because the switch from analog to digital TV was going to happen. For months they have been advertising the switch--each time my husband always asks if we are ready. Well, I was robbed! When Feb. came, they postponed it to June! Four more months of those darned commercials and the same question, over and over, every night. I sure hope the switch finally happens in June!
I'm new to this website. My husband also has issues with his prostate and was up every couple of hours. However these last couple of months, he has been moaning a lot in his sleep as if he is either in pain or freightened. He spent about 15 minutes last night caring on a conversation which made me cry to think of his life. Then too, he is completely dependent on me except for eating which he is using his fingers more than his utensils. He can urinate/poop with my help which is great not to use pads as yet but can't ask anyone to help. The yard is green is all I can say for it. Meals are simple and finger foods mostly. Thank goodness for the crock pot to make things very tender. I need SLEEP! I am bored! I need to talk! I'd like some free time alone! Those are my stressors. Thanks.
Just to be clear, there is no money worth talking about. But his social security is more than twice mine and he has a small pension. Since we own our own home, we basically live on those. And yes, I know I can turn the IRAs into annuities when the time comes, but the time has not come and may never come. Right now the right thing to do is just to sit tight.
I did all the basic paperwork last year when it was still legal for him to sign stuff. Most of the finances are currently set up as well as they can be set up. I own the car. The back set up all of the accounts, joint with right of survivorship, so they won't be locked if he dies suddenly. Etc.
But future finances really are a problem, but I keep reminding myself, they are a problem for the future.
My biggest stress . . . . that's a difficult question. I think it is every little thing that ends up on my shoulder and has this domino effect. If I were to chose, I would say it is having to make 100% of all decisions. Next one is a tie between repetition and his obsessions.
On-going, never-ending stress- as this horrible disease progresses. I have gone through suspicion, never ending questions over and over, anger, rages, arguing, and now the stress is different, The stress has now turned into enormous heartache, watching this man's-man, turn into my child. Stress is, watching him now loosing his ability to walk, feed himself with his fingers, unable to find the toilet, most words jumbled, his eyesight almost zero, not being able to sit in the chair without my guiding and plopping him down, praying he will not fall as I shower him, always being on guard, so I can anticipate his every need and safety, watching him board his Day-Care bus, like a small child, having to miss work as there are never-ending MD appts. Stress and actual heartache- AND ISOLATION AND LONLINESS- as when he is home, all he wants to do is sleep.
Mine is having to be up at least three times a night because he doesn't sleep after 2:30-3:00 a.m., and sometimes having to clean up the bathroom in the middle of the night, and like this morning - from 4 a.m. on he kept waking me up because he thought it was time to get up. He can't tell time any more and showing him that it is pitch black outside doesn't work, and this morning, finding a movie for him to sit in bed to watch while I slept didn't work. <Sigh> My sleep deprivation causes me more stress. And knowing that it may not be much longer before I have to put him in a nursing home. That is stressful as well.
The Long Term Insurance Company is causing me great stress. We have paid enormous premiums for many years and now, when we make our very first claim, they are making it almost impossible for us to activate the policy. Their demands, including the requirement that the "health care worker" take daily care notes, means that we can only use the most expensive agencies. An agency that meets their criteria charges more than double the others negating the benefit. I am ready to throw my hands up and surrender. All the while we are paying our premiums.
Brooke-we also have a LTC policy-Genworth. Does the requirment of health care worker notes specify who that worker is? Is this for home care or in a facility? Don't give up=paid too much in.
Sorry to tell you that our policy is with Genworth also. I will come back on line when I have more time and "read to you" the specs of our policy. This is just to get some help in the home. Later ...
Just to keep things on topic and organized, I have moved Brooke and Bluedaze's discussion of Long Term Care Policies to the existing topic - Long Term Care Insurance.
Besides the financial stuff, my biggest stressor is trying to maintain a positive upbeat attitude when I visit him. He is not talking much anymore and often there is very little to no interaction (besides the kisses he wants) so I don't really get any input coming back to help me be positive with him.
He is changing and losing a bit before my eyes almost daily. Keeping up with the changes and reacting appropriately to them is also a huge stressor. I am very grateful that the staff of the faciltiy he is in is very patient in answering all of my questions. That helps a lot!
No, I do not believe I get "his" social security when he dies. They calculated it both ways when I originally filed. Mine came out about $5 or $10 higher than getting half of his did. If there is any money in the IRA after he dies I can turn those into annuities, but I have no idea how much that would net me. Probably not much. If he lives for 3 or 4 more years, the house might be salable. One of our neighbors seems to have a house that is going to contract. But most of the houses in this new development that are for sale aren't selling.
Starling-- While you're both alive, you are drawing your Social Security because it is more than the 1/2 of his you'd get drawing on his. However, when your spouse passes on you will get yours or his (whole amount) which ever is larger, but not both. My Mother went through this when my Step-dad died.
Copied from Social Security Survivor Benefits: "How Much Would I Get". Note: It is NOT only 50% of his. The amount of your benefit is based on the earnings of the person who died. The more s/he paid into Social Security, the higher your benefits will be. The amount you will get is a percentage of the deceased's basic Social Security benefit. The percentage depends on your age and the type of benefit for which you are eligible. Here are the most typical situations:
• widow or widower, age 65 or older - 100 percent
• widow or widower age, 60-64 - about 71-94 percent
I don't know if you'd call it isolation or loneliness, but my greatest stressor is lack of contact. He sleeps a lot of the time I'm up (I'm up a lot).Can't have the TV on because it "keeps him awake" (the man who needs a hearing aid). Can't talk on the phone long--same reason. He was never very demonstrative, but had no problems sharing hugs when requested. Not now. Doesn't want them. He will bring me a cup of coffee or tea sometimes, out of the blue.
But now, so much of the time he is gone, into his world, when he's awake.
We go to the store on Sunday mornings. There are people there, I know, at least to chat with for a few minutes. The round trip costs us $6. Can't afford to do that often.
The pets help a lot. And this site. Someone brings me Communion each week. I have a couple e-mail pals.
But there a lot of hours in the day. . . . . . . . .
I have earphones (not earbuds) with a radio in them. I listen to NPR or to a classical music station that comes out of Boston. I don't disturb my husband, I can still hear the phone or if he hollers, but they're a lifesaver for me. I also use my emergency radio and tote it around with me and keep it set soft.
Starling--I worked for the Soc. Sec. Admin. for 32 years. What Carosi and Nancy told you above is absolutely correct. When a spouse reports the death to SSA, they tell them about the lump sum death payment (used to be $255--may still be) and the conversion to widow or widower's benefits.