I invite you to log onto the home page -www.thealzheimerspouse.com- and read today's blog. I would like to hear from you who have experienced what I wrote about and what you have done; what you think I should do; if you feel the same as I do.
Maybe we shouldn't build these "brick walls" around ourselves in order to protect and safeguard our emotions. Let the bricks fall where they may. Life is awfully short to always keep ourselves protected. Perhaps we should just be thankful for the good moments and treasure them. We know they won't last. Nothing is guaranteed in this life and I know we are all finding that out.
I agree also. I haven't built any walls. When he is "good", he is very very good - and I enjoy it. And when he is bad - well, I just wait for the next good.
My take: Yeah, I think I have "walls," but in reality it's nothing more than a psychological device. My ability to experience the hurt of losing my partner is never perma-sealed out. I say that there are walls. But it might be better to describe the phenomenon as a trick I've learned that enables me to block out certain areas of thought. They are, in fact, more like blinders than walls. The ouch finds ways to poke through.
That said, what the heck. Enjoy whatever you've got of a relationship while you've got it. It's not like you're going to be able to save yourself pain later, "walls" or no, so live in the moment. We'll revisit the loss a million times throughout the process, no matter what psychological tricks we attempt.
If I were you I think I would love him with all my heart because he was back. We will be hurt no matter what happens, but I would kick myself if I did not love again if he was back with me. I feel so bad that I didn't cherish my husband 10 months ago when he was changing so much. I know I didn't know about this disease as much as I know now, but if I did, I would cherish every moment because I knew it would be gone forever
Joan, I don't know what you should do,because I too have seen bits of "MY PAUL" and then he disappears again.Why does this happen,it gives us alittle glimmer of the man we once loved and then pulls the rug out from under us!!Guess the others are right-enjoy whatever you can before it vanishes again.Good luck to you and to all of us.
I for one would embrace and enjoy it for as long as possible! I understand the need to build those walls....but perhaps when building we should leave some room for some windows..so we can see, and feel the good when we are graced with it.
I don't build brick walls (at least I don't think I do). When I had my surgeries my husband was as helpful as he could be. He was worried about me, but, I realize now, he was also worried about himself. He worries I won't be around to take care of him. That's why he wants to go everywhere I go, he's worried about something happening to me. He told me that himself. He's afraid I won't come back.
I take the caring while I can. One day he's sweet, the next he isn't. I try to go with the flow. What else can we do? Of course, there are times when he's so mean and I have to breathe deeply and leave the room because I don't want there to be an argument or get him upset and make things worse. Perhaps I can call that "building a brick wall." But, I'll take the good days and not let myself worry about the bad ones, although I do admit sometimes it's very hard to do. But, as we're all told by everyone who knows about this disease, it isn't really him, he's not himself. He's some other person who sometimes I love and sometimes I don't. That's just the way it is. I don't like it, but what else can I do? Building walls isn't going to help either of us.
Joan- get rid of the bricks and replace it that ugly brick wall with a pretty 4 ft high white picket fence...you will find that you can still hide behind the fence, and occasionally peek over the top/.Spend the extra money on one that you do not have to paint, and maintain...The fence allows you to stay inside your yard, yet you can jump over anytime you want, or install a gate and you can cross over at will... The fence will serve a dual purpose....It will keep your loved one on the right side of the fence, and also keep out unwanted critters or people/// And you can always decorate it with purple ribbons.
Recently, my DH went through a difficult time. In addition to AD he was experiencing terrific pain in hands, arms, legs and feet. He also had chest pain and face pain. He complained all the time and was impossible. We went to 5 doctors and had test after test. We went to an emergency room. Finally, he was diagnosed with polyneuropathy and was put on neurontin. It helped some, but the complaining continued. In addition he had terrible anxiety and thought he was dying. We could not go anywhere except to a doctor. Finally, he saw a geriatric psychiatrist and was put on Bus par. He was immensely helped by this anti-anxiety medication. I learned a lot from this experience. I know now he has no control over how he responds to anything. Since he has improved on his medications he is calmer and easier to live with. I also see him declining more. He does not recognize himself in old pictures. He has started day care twice a week and he likes it. I felt guilty the first week of day care, but now I know this is what he needs.
I guess I have 4 reactions to what you wrote, Joan. First, I'm glad to hear that you are feeling a little bit better, at least feeling well enough to post a blog today. So please keep on healing. Second, your last line sums it all up: Being an Alzheimer spouse is a living hell. That really says it all in just 7 words!! Third, your blog made me think back to that 1990 Robin Williams/Robert DeNiro film, "Awakenings." The catatonic character played by DeNiro was able to return to his 'old self' for a short period of time due to the experimental meds given to him by his doctor, played by Robin Williams. The 'awakening' didn't last long, but during that awakening period it was wonderful. So, Joan, my 4th reaction is ... enjoy every minute of time with that 'torn wall' ... enjoy it for as long as you can. Yeah, it may hurt that much more when that wall inevitably goes back up. But until it does ... enjoy being with your Sid!
(Even though I refreshed it didn't come up until today - think the computer didn't like yesterday's 91 degree temps!!!) Your blog hit home with me as this has been a particularly difficult week so far - and it's only Tuesday. One minute DH is sweet and says he is sorry that he is so much trouble and the next he is being the most arbitrary and difficult person I have ever met. I need more of those nice moments or I will never make it through the crappy ones. The aide has noticed these changes too. As I said in the previous posts - I long for the day when he sleeps 18 hours because now he is constantly moving, getting into things etc......I need the rest!!!!!!! I love phranque's fence. 4 feet isn't high enough though. 8 feet would be nice.
I am always available for his love and unfortunately for his verbal abuse, I choose to tell myself "there is nothing personal going on here" when he swears at me. But oh, those loving moments I treasure to the fullest. Just this morning I woke up thinking I would begin to count the number of days I had left of waking up with my lover, my friend beside me. Today was number one. I too have been "off my feet" after a bad fall a month ago. He of course cannot understand why I am just sitting around, Doctor's orders mean nothing to him. We live in a two story house and he is always on the other floor hollering for me to come get something for him. Stairs are hell, but he cannot understand that I hurt. Oh well, I will get better, he unfortunately will get worse. I am fortunate to have him in a day care four days a week, I could not do it all on my own. Soon he will have to be placed, but until then I plan to enjoy what I can and let the rest drift off with the breeze.
Andy, I have to admit, though, that living with the fact that having to adjust my feelings to the way he is on that particular day is extremely difficult, because sometimes I wake up and feel down but he's in a good mood, or I wake up feeling great and he isn't in a good mood. I'm sure many of you feel the same way, having to behave according to your spouse's moods. This is not easy. But there is really nothing we can do about it. This is just the way things are. And, it's going to get worse. Sometimes just the thought of that is overwhelming. But, we go on.