I have posted the stress interview that I took during one of the break-out sessions at the conference a couple of weeks ago. I scored higher than anyone in the room with me, which would have been fine if I had been taking the SAT's, but not so good for this test. What about you? Log onto the home page - www.thealzheimerspouse.com, and give it a try. You may have to "refresh" the page for the questionaire to come up.
I took the test. I scored 49. There were a few 4s, but there were also some zeros, and a couple of 1s where I could have scored a zero just as well.
I know that my main problem right now is a total lack of a social life and that I'm having very little human contact outside of the Internet. There are also language issues which can get pretty bad if he gets frustrated. I deal with minimal violence, almost none most of the time, some grumpiness, but that is about all. He goes off on 2 hour walks which provides some respite, but I rarely go anywhere without him, which makes some things difficult or impossible. I'm not dealing with the bad physical problems in stages 6 or 7.
Still, like just about everyone else doing this stuff there are times when I would like to run away.
I don't seem to have scored very high...(remember my husband can't speak, is good natured and has no rage/anger issues either- at stage 7).....I only had 12......
scored 34. lack of social life as well like starling. as disease progresses and end stages get more obvious this of course will change dramactically for us all. mine will be over the top by then. divvi
WOW...I just scored a 73......and now I am really stressed....I think now that I know the answers, I will take the test again, and see if I can get a better score... I was always pretty good at multiple choice questions, and I did not have to guess too much....but I will try it again..did not like the score I got...
I've told you all before....I could not take 24/7 care like most of you do. I hope that you can get some inhome care, even if only 4 hours a week, to go out with old friends, go to a museum, shop, a movie, lunch, etc. - just have time for yourselves....and realize that you need to enjoy yourselves. It's not selfish....if we were selfish people, we wouldn't be here!!!!! TAKE TIME FOR YOU!!!!
Mary, my score was low also but then my DH is still in the mild stage and the only thing I have to do for him is take him to his doctor's appointments and jog his memory :>O Almost forgot, make dinner everynight. There is nothing wrong with his appetite.
I scored 20, but my DH is still in the mild stage also. Don't have to do very much for him except he doesn't drive. And answer the same questions a zillion times a day! Guess this is why I didn't qualify for the stress study.
One of our readers sent me the link to this questionaire, which did NOT have the ranges that came with the one I took at the conference. i.e. - 1-20 they tell you that you're doing fine. 20-whatever - they tell you how you are doing, and so forth. I will look for that scale in the mess of papers on my desk, and if I find it, I will post it. I scored in the 70's the day of the conference. Today I scored a 56. Guess I'm having a better day.
I guess I'm OK. I scored 23. I think the adult day care she goes to 3 days a week, plus living in the retirement home, has made life much easier for me.
I scored a 47. Hard to number some of the questions. I can see where it will be getting worse as new symptoms occur. I was picked for the stress study.
Ann, have a glass of wine...I suggest that you try to make a list of what has to be done each day, what you alone can do, what you can ask others to help you with, and make certain that you include your needs on that list....
Here is a piece of myself that I'm offering in the hopes that it may help at least one person who reads it:
When I get home from work, my husband and the two dogs greet me and want their hugs...and all three get them! Hubby gets a kiss too, and then I turn him around and escort him to his recliner (so he doesn't try to dart out the door before I can lock it!), then I talk to him while I put my things down, then pour me a glass of wine, and pour him a 1/4 glass of wine. Then I sit beside him and ask him if he had a good day, then after he says yes (always!) I tell him about my day. Then I talk to him about what we're going to have for dinner and ask him if he likes what is on TV, and if he says yes, then I can take a couple of minutes to open the mail while he looks at the TV. If I try to come in and go to the back of the house to change clothes, or do anything else, he's right behind me and starts to pick up something that doesn't need to be moved, thereby causing a possible tug of war....so I've learned what works to make us both have less stress. It's amazing what I can accomplish once he's asleep at night! <grin> The main thing I've learned is flexibility. I have learned that nothing is so vital that it has to be done on a schedule (except going to work!) and I've learned to go with the flow - because I don't want his disease to get me too. My husband is so much further along than some of yours, so he is easier to deal with now. Earlier was much more stressful. I learned something very important since my husband was diagnosed. I am the person responsible for making me happy. No one else can make me happy, and no one can take away my happiness unless I allow them to do so. So I have cubbyholes in my mind where I put things and deal with them one at a time when I can. It has helped me. I'm telling you all this about myself in the hopes that it can help you too. We all are stressed from having our spouses suffer from AD and trying to do our best to take care of them the best we can. Anything we can do to ease that stress is a blessing.
Most likely we all have different situations. Certainly my biggest problems are the lack of family support and finacial. His family choses not to believe this dx, and they haven't seen him in 4 years. Our son, who is in college, is our biggest support. He is the one who saw this coming on many years ago. He calls at least once a day to talk with his father.
My husband was diagnosed with EOAD 2 years ago. He just turned 62 and I am 52. My mother was diagnosed with cancer at the same time and died just a year ago. My husband was working as a pharmacist until that day he was told that he would no longer work again. He is on SSD, but it is a small fraction of his previous salary and any "rainy day fund" was depleted quickly. All Agencies just laughed at me when I asked for help. His age has placed us in that "gap" period. He requires 24/7 care. The latest checkup revealed that he is entering the severe stage.......however, he still can tell you the chemical make up of medications.
I know the stress killing me----I can feel it. I'm still recovering from a fall in January. --We live in a small town and can't afford to pay someone to come into the home to help. I've been considering NH, but am trying to figure out how to pay for that as well. Funny how his family thinks that I should continue to care for him alone at home!
You might ask about my son coming home.......(husband also has a daughter), but the one promise I have made is that this horrible disease won't ruin our son's (and our) dreams of education. He's working on his Master's at Cornell University in Biomedical Eng. Of course, we all know what his hope is...........to find a cure for this monster of a disease!
Marys got a great outlook on getting thru the disease intact. we should all do well if we can manage to copy that attitude. bully for you mary! and ditto to all the above -divvi
I scored 78, like I didn't already know I had stress. And yet, really I'm still happy, I still sing at the top of my lungs when the urge strikes me. I still try to find the humor in the situations that arise (when I write them down later). I don't like my score either.
I agree - Mary's advice is the right stuff....that is what I do too. My only stress point is the loneliness. Sometimes I'm o.k., sometimes not. I hate the not.
Scored 56 but would probably score differently on day with more emotions or less emotions from my LW.. Also, I though some of the questions were hard to understand. I think tomorrow, they might have a different meaning. I am a technical writer and find questions to be very misleading or worse, LEADING!!!!
Mary, I think your advice is invaluable. My DH wants to take at least a 3-hour nap every afternoon with his head in my lap. At first, it made me frantic - I should be doing this instead, etc. etc. Then, I thought about it and decided that nothing was more important - not cleaning or anything else that I should be doing with that time. So I have taught myself to relax and enjoy the respite myself. I feel much better about it now. I scored 35 by the way - not too bad.
Seriously, Mary, those are words of wisdom. It has taken me many years to get to a point where I can relax, let go, and not feel guilty about enjoying life's small pleasures - a restful nap, a quiet sitdown with a cat on my lap, a lazy stroll around the property - when there are things to be done. Those things will wait.
Mary- your advise was great and your husband sounds fairly layed back like mine.
I scored a 2 as I'm only concerned about my husbands future. Right now he's in the early stage. I haven't had to clean the house in almost three years so he is taking care of me vs. the other way around. He's also at peace with his disease and pleasant most of the time. I'm sure that scores increase with the decline and behavior problems have a big impact as well.
Hello everybody, I scored a 21 on the test. I think stress may not be as bad for me because my father taught me that worry never fixed anything. As a result I simply deal with each issue as it comes up and then I move on to the next one. The only thing I scored a 4 on was No. 7 Are you afraid of what the future holds for your loved one. This is the one thing that I know I have no way to deal with. It will happen and there is nothing I can do to prevent it in the end and it really bothers me to know that Kathryn will have to suffer the physical parts of the disease. I have no ideal how I am going to deal with it. I know I can do what I have to to help her but I don't know if I will be able to stand to see her suffer with the physical parts that are talked about in stage seven.
I admire everyone of you for doing it. It hurts my heart to even think about it.
I scored a 27, but I'm at my daughter's so I have company, and I've got company. On another day, especially one in which he's being difficult, things might be different.
Anchor, this is the time to find a good hospice/palliative care program. There is NO need for someone to suffer physical pain, and a GOOD hospice program, especially one that has a palliative care section, will make sure that she does not suffer physically. If you check them out now, not in the throes of an emergency, it will give you peace of mind to know that you've already planned for the eventuality.
As far as stress, I was cleaning a drawer and found a fortune from a fortune cookie that I had saved. It says, "It's time to treat yourself to something special." Even if that is just something as simple as sitting down with a nice cup of tea or coffee and NOT DOING ANYTHING, I hope everyone can follow the cookie's advice for a few minutes today.
I scored a 32 - mostly cause I gave myself a 1 on many questions knowing that inside somewhere that is true. The most stress is the unknown of when and how fast progression will come. Finances are another stress.
I scored a 12. But had I taken the test 6 months ago it would have been more like a 45. I have learned to take it one day at a time. Having in home health services 3 hours a day helps a lot also. I've only had this for a short time.
ladies and gents, i took the test as if my dh was still in the home and I scored a 76, then I took it with him being in the nh scored a 19, guess that was a good thing placing him, i still feel stressed at times but for small things like not visiting enough,feeling guilty when he says can I come home, I still feel lost from my friends, things that can be fixed right?
I answered as conservatively as I could and had no idea where the scoring would be..I scored a 66. Not good. Guess I'm living in the midst of major denial. I've been told such by several knowledgeable people..and I sooooooo don't want it to be true. I don't want any of this to be true. I am like Marygail...I am so lost and none of my friends are around anymore. I wonder how much of this is my fault. I've always been able to fix most anything..and never thought I'd be at a loss at how to fix AD or our life situation.
Thank you for taking the time to reply. I appreciate it.
I know medicine today is very good at pain management. What I meant is the mental pain she will suffer when she reaches the stage where the physical problems begin; I hope it will be a long time before Kathryn will have to suffer the physical parts of the disease. I can't bare the thought of having to watch her go through the end stage, knowing that there is nothing I will be able to do about it. I wish I could do it for her.