I do not post too much anymore but there are a couple of things that I have learned, probably the hard way but I wanted to share them with you who are taking care of your spouses. First of all if you remember anytime I have posted I will say that my husband is extremely easy to care for. I still say that. I am a fairly easy going person and try to hardly ever loose my cool.(my blood pressure remains fairly good for a person of 73) I think that relates very closely to my husband being easy to care for. I didn't say I never lose my cool but try not to. What difference does it make if his clothes are matching or not. Who cares if he paces or not. It is good exercise for him. If he want to eat breakfast at dinner time so what. I just don't fuss over these little things. I don't care or expect him to do any chores or duties around the house that he used to do. If he does good and if he doesn't that is alright also. He is not the reason I am not going out to shop or have lunch with others. I am a caregiver because it is my choice and I believe in the marriage vows. There is a site that teaches about Alzheimers. You just read, to the best of my thinking there is no posting of any kind from caregivers. It is an excellent site and from it I learned about the men's toilet problems that arise. Many months ago I bought a raised seat. To this day each and every time my husband goes in to the bathroom he will look at it as if it was the first time he saw it. In the beginning when he tried to use it I had puddles and spray all over the place. So to combat that I go in with him day or night and help him pull down his pants and go. Everything in the pot, that is a wonderful thing. He would always say do I have to sit down? Yes, was the standard reply. After reading the article I looked at the situation in a different light. Now when he says" "do I have to sit down I reply yes, you decided to do that so that I would not have to wash the floor everytime you go to the pot. He is a happy camper because in his mind he decided to do something to help me. He is happy and I am happy. (creative lying is a wonderful thing)
Now I know that there will be lots of people that will disagree with me in my handling of these problems but I firmly believe that being calm, cool and relatively collected in careing for your loved one will reflect in their attitude. I just am a firm believer in what I say and will handle all the coming problems in this way.
If this helps you in anyway good, if not, I tried. Nancy
Sally-I think your calm behavior is what keeps your husband calm. In a way you are fortunate that he remains easy to care for. The rages that come out of nowhere make it difficult to keep your cool.
You have some very valid points and I will try to include them in my day-to-day. DH is very easy to take care of but I will have to agree with Bluedze, I've seen those rages and they come from no where. Sometimes they get out of bed with them. It would take a particularly type of person to remain really calm in those situations, expecially if they go on for days, weeks or months. I agree withyou--getting angry back is no solution either. I don't have that to deal with at this time and don't know what I woud do.
I think we should put a special blessing on all of our caregivers and be grateful for the insights that we have all learned from this site.
Sally, what is the site you mention that teaches about Alzheimer's?
I agree with Mawzy, that sometimes the rages come out of NOwhere. We can be calm and quiet all day and when I go to help him get to bed - he can't do it on his own, suddenly he'll say NO when I ask him to take off his shoes (as I do every night). And basically throw a tantrum. This after a pleasant day, a good dinner, etc.
Briegull, the site is the bigmurphy one. Bluedaze mentioned it in one of her postings. Great site. Lots to learn and plenty of common sense things brought up.
I believe my husband is in the middle of the 6th stage and am fully aware that rough roads may be ahead. A gentle, godloving man I knew for many years died of Alzheimers and he never once was anything but a gentleman. He did wander once and had to be watched for that but never once in his whole life did he know an angry moment. He lived to be 94. He is the reason for all my hope for a fairly good life ending experience.
Nancy, I do agree with you. Even in a full out blow up with hate and aggression... I "learned" not to feed the fire. I didn't reply to taunts, I didn't rise to the bait. I simply agreed in soothing tones, or nodded my head. It is futile to try to argue with someone who has no reasoning powers. Right or wrong, it worked for me. By working for me, it worked for us. He can not control his moods and temper, I can. So I felt it was up to me to do so. My moods and reactions definitely play a role in how he reacts, or how long his "temper tantrum' last.
briegull, the site Sally is talking about is very extensive, and you can wander around in it for days and still find new things. The site map is at:
http://bigtreemurphy.com/SiteMap.htm
Also, I've found that sometimes a link doesn't work because it wasn't quite filled in correctly. The links are actually still there. You just have to look in the URL box to see what's wrong. For example, it might have "http://www.http://www" and you just have to cut it back to a single "http://www" to get it to work.
Alzheimer's disease is always a step ahead of me. We went shopping for a new recliner for my husband. He sat in them, they were to big, too small didn't rock, rocked too much. After shopping, I realized he can't make a decision. It is just like when we go to a restaurant. He asks me what he should have. He has become more even tempered with AD. Things used to upset him if they were not done his way. He had let that go. I have glimpsed how a rage may be. One evening when we were talking about something he had done that day he got very, very upset for a few minutes. Then, he became quiet and said, "I don't know where that came from" Mary
Oh, I agree about bigtreemurphy. Got to it before this one. It really is great.
What I was trying to say is that however sweet and gentle and understanding and kind you are, 24/7, however much you let things wash over you because you know they can't help it, however much you value your vows and would never transgress on them, however much you pray, and however kind your spouse has always been, etc etc etc - there MAY come a time when EVEN IN SPITE OF ALL YOU DO RIGHT, they can rage against you.
And you stay sweet and gentle and understanding, etc. But you remember it, and they don't.
I have a new problem: My sister, a retired school teacher, never married, has lived alone since our mother died at 100 5 years ago. She is now complaining to me that she is feeling "Left out" because I don't tell her everything going on with me and my wife. She wants to help, but my wife has never felt comfortable with her (DW grew up with 4 "old maid" school teachers). I tried to tell her that all my energy and emotion is tied up in the one job of caring for my wife. She said she "understands", but still wants to be included. I don't know how I can keep her satisfied and still take proper care of my wife.
There's a lot more to this, but that is the gist of it.
Marsh, I can't really give you good advice because I was an only child, as was my husband. Maybe your sister needs to be needed, and if she is capable, she could volunteer her services at a clinic or school that would make her feel useful.
As you have told her, your wife is a private person, and you don't feel comfortable discussing her situation with your sister. To talk about it makes it hurt you more, and you have all you can put on your platter just taking care of her. Also, if you discussed it with her, you would be forced to think about how much it hurts you to see your wife like she is and you can't do that.
marsh-I think you live in a retirement complex. Your sister must be feeling her mortality. Can she join you and your wife for a weekly brunch hopefully in a dining room setting. That gets you off the hook for cooking and the visit might be self limiting when the meal is over.
Marsh, is she asking for information, or is she actually offering to help? If she's saying she'd like to help, take her up on it. Surely there are some things she could do -- cook a meal now and then, a little cleaning or laundry, some grocery shopping (or helping you pick out clothes for your wife, no pantyhose please... <grin>) -- it might make her feel needed and useful, and help you out at the same time. Or at least, tell her how much you'd appreciate it if she'd do x, y, and z, and see how she reacts. If she's just making noises to get you to talk, telling her you'd love her help might encourage her to find someone else to talk to...
briegull, I agree. No matter how calm and understanding I was, Lynn did indeed rage against me. In time though I learned to ignore even this. Amazing what one can cope with. Now with the seroquel, this isn't a problem. But it was a lesson hard earned and I will never forget it.
I found bigtree several years ago as well, it is a great site, but nothing I have found can compare to what I found here... people to share with and who truly know what I am experiencing.
Marsh, it sounds like your sister is lonely. I have 6 brothers and sisters. We are extremely close. I thought I was helping them by not always talking about what was happening with Lynn. They thought I was closing in within myself. They explained though their wasn't anything they could do to stop the disease, they wanted to be there for me. Now, I let them.
One can never have too many people to love. I keep things I know Lynn wouldn't want shared private, but I do express how deeply I am being effected. Perhaps that is something you can do with your sis? It sounds like she cares and just wants to be included. I thought bluedaze's idea about the brunch was great. Best of luck ~Nikki
Marsh I am an only child so no experience with sisters but is it possible she has "empty nest syndrome" after your Mother passed? From most of the posts here there is seldom any help offered by family, even children. She isn't wanting to move in with you and your wife, is she? I think meeting for lunch sounds good.
I am not sure of the meaning of her call either, but Marsh if she is offering some help or respite for you by golly take it. maybe your wife is now advanced enough to really not know who she is now and you can say she is a nice 'friend' to keep her company at times? of course with her age limits she may not be able to do much but it could give you some free time a few hrs at least. if you get along well with her, i dont see why you shouldnt visit with her at times, you need family and another woman could be a good thing for DW at this point. you should try and see how it goes. maybe have her over in DW surrounding first so shes more comfortable before meeting in public. just a thought. whatever feelings were in the past with regards to your DW and sister are exactly that now, with DW condition and memory loss= i hope it works out for you -divvi
Thanks for all your suggestions. I guess this is something I will have to deal with as things come up. I'll try Mary's suggestion that it hurts me to talk about it much. I do try to have her join us for a meal at times. When any of our kids are here she manages to be included in just about every meal. We do go to her house occasionally for dinner, but she's not a good cook. As Nikki suggested, I know she is lonely and I have encouraged her to get out more. She is in several local organizations. I can't ask her to sit with my wife while I go to do something, since my wife would not tolerate being alone with her. Maybe later, but I doubt it.
Again, thanks for your help. As others have said, this is a great group. Just "venting" has helped me.
Your most welcome Marsh, just wish I had a magic wand to help all of us! It is too bad your wife doesn't care for your sis. So many of us have family and friends who won't help, it is refreshing to hear of one who wants to! I had to laugh at your comment about your sis not being a good cook..cracked me up! The things we do for family! lol Best of luck~Nikki