Joan, I read your amusing account of you and your husband's night out..I also felt a twinge of envy that you two can still "connect " and enjoy the intimacy of sharing experiences still. I just want to stress that these are precious interludes for you and Sid so savor these moments to the fullest. I know the other every day confrontations with the result of the disease are so debilitating and heartbreaking but when ever you can coax a smile from your loved one rejoice. The infrequent times he/she initiates an embrace, kiss, or other sign of affection then rejoice. Whenever you look at them and can see a spark of the old person then rejoice. My husband has lost the ability to communicate, he does not smile, we don't have that special connection , he sometimes doesn't know me, and he is my "beloved stranger". These moments you have can be put deep within your heart to later bring out as a sweet rememberance . When my husband was able to talk, and to go with me to events, I did not savor the lucid moments. I share this with you, my friends, so that perhaps you will benefit from my lack of living the moments with my dear one. Be aware that time is fleeting and make the most of your good moments. I hope you are not offended by my advice but I wish someone would have stressed for me the importance of recognizing and feeding all my senses on the "connecting" moments. ""
I loved your blog today. It made me smile. I am thankful for everyday that my DH is able to have a conversation with me and laugh with me. I know that some day I won't be so lucky.
That was a riot, Joan. It reminds me of a visit my husband and I made to the Wild Animal Park. We were at one of the shows, sitting in the front row waiting for the show to start. My husband was nearer to the entrance than I was. A woman (quite possibly the one your husband saw, from your description!!!) came in and was walking (if that humble word could be used to describe her locomotion) toward us. I just KNEW his eyes were glued. As she went past, his eyes followed, his head turning, turning, turning ... until he came eyeball to eyeball with me.
He turned the most delightful shade of red.
I'm quite sure that memory will be one of the last things to go, for both of us.
carewife, dear lady, would you please remind us over and over and over again? Your post is something we need to hear when things are rough.
To this one, I have "claimed for me" a chorus to a song by Trace Atkins. It was written about his daughters wanting to grow up so fast, but the chorus just HIT me as being so applicable to what I want from the "good AD days". It's lyrics are "You're gonna miss this , you're going to want this back. You're gonna wish these days hadn't gone by so fast! These are some good times , so take a good look around. You may not know it now, but you're gonna miss this!!" So I have tried to look at life with DH to make the most of what we can for now, before it is all gone! I think we are approaching stage 7 it seems at a more accererated rate than the last stage change. He is still able to walk and go though communication skills are fading and I have had to get much more independent than in the past! Maybe God's way of us adjusting to what it is come!
When my daughter was a baby, 40+ years ago, I kept telling myself to PAY ATTENTION because it was all going to disappear too fast. At that point all of the other children in the family were in their middle to late teens, and I'd seen it happen to my sister and brother.
I ought to be PAYING ATTENTION now... But it hurts to pay attention.
My "joke" to myself as I have watched my husband go through the various stages is to remember that one day this will be "the good old days". Carewife is right, it is so important to treasure the good moments and times as long as you can because the day will come when there won't be much if anything left. As he is now, I am happy with a moment of lucidity. Yesterday when we were walking around one of the aids at the facility he is in said hello to him and commented on how I was right next to him (holding hands as usual). He told her "yes, we are back together again". I am not sure how to take that comment but it was and interesting turn of phrase.
Therrja, you are a discerning lady to be able to understand that these "good moments" will be less and less evident...and the painful behavior will become more and more prevelent until your spouse begins to shut down altogether and become someone else . I now wish I could have just a few moments of "connecting" . I would relish the shadowing routine, (he now cannot walk), relish the language being understandable,(he doesn't talk now, only very seldom do we get a word here and there that we understand, and the joy we feel is rather pathetic. The sadness in his countenance is palatable and almost unbearable to observe. I know that if you are frustrated, and feeling harassed by the stress of caring for someone who gives you no peace, that you wish for a few moments without tension but your spouse will pass through these agitating and aggravating stages and pieces of his personality will disappear leaving you with very little to remember, so tuck away the good memories now.
This is so scary that someday I will look back on these as "good days". I sobbed last night over the frustration of trying to get him ready for bed, trying to put his pajamas on, putting him back in bed 4 times. having him look at me and tell me I was a "nice lady" but he didn't know who I was....then I realize that so much worse is coming and I don't know how I will bear it. He is so scared and upset these days---keeps talking about how scared he is of dying, that he hates this disease, etc. What an awful thing for anyone to have to go through. He looks so bewildered.
I keep trying to stay calm, try to ask him to do little things, try to appreciate anything that he can do, but I don't do well at that. I'm afraid that I am still so angry and bitter and what life has dealt us.
A year ago my husband had an evening where he kept talking about how he was going to die soon. It took me a while to figure out what he wanted, but I finally looked at him and asked him if he wanted me to be there with him when that happened. He said yes, I told him that if I could be there, I would be. As soon as I told him that, I could see the tension and fear flow out of him.
FLgirl when there are two things that I did when it came time to get my husband in bed. I stopped the battle to get him ready for bed - does it really matter if he sleeps in the clothes he wore all day? Since the day we were together, my husband had always slept nude. He complained that he hated the feeling of constriction from pajamas and clothes. As the disease progressed he started sleeping in his underwear and then eventually in his clothes. It finally hit the point where I could not even get him to take his shoes off.
The second thing I used was music. My husband always loved music so I started playing CD's that he really liked. For several months that was all it took to get him settled and to sleep. Even when he went to the facility, we found that he would usually stay in bed if he started the night with music. I need to add a note on this one as the music never bothered me, I just took my hearing aids out and couldn't hear it at all so I slept well too.
Thanks for the hints. He actually insists on showering (if you can call the splash of water that gets on him a shower) and putting on pajamas very early in the evening. I try to tell him he should wait until it's dark outside, but that doesn't always work. He only wears boxers and a t shirt, but it's getting to be really difficult to get his arms and legs to move even to put them on---they get frozen. But the music is a good idea to relax us both. We went to a 60s music concert last night and he really enjoyed it.
A little off topic... but music has been wonderful for us. He has developed a love of older music.... 60's sort of stuff. What amazes me that when we sit to listen he actually can remember every word and sings along with no inhibitions... this from a man who can't remember what he ate five minutes earlier.
Thank goodness for Amazon!..When ever he remembers a song or hears it on TV and says he likes it, I order it right away. He is always so surprised that I knew he liked it.... He thinks I'm magic!!!!
I know I am lucky to still have these experiences.......
You know, you have to pick our battles. I get my husband to shower and shave usually once a week. Since he does nothing all week, and half the time stays in his PJ's, who cares? If he gets dressed, and then is too tired to take off his clothes , who cares. I bought him these knit pants, like PJ's but in dark colors, so he can sleep around the house and be dressed. It's just like little kids, you have to pick your battles. We went to a wake last night, and old friends commented on the fact that he wasn't shaven. My response (because he used to have a moustache), He hasn't decided if he's going to let it grow on his chin or under his nose, so we're trying out both. The end. Remember "Those who matter don't mind, and those who mind don't matter".
If I tell my husband we are going out to dinner, he'll take a bath and shave and I'll lay out his clean underwear, shirt, slacks and socks on the bathroom counter for him. He will wear those same clothes until the next time I tell him we're going some place, so we go "some place" every two days! :) He has slept nude since we got married, and has his clothes beside the bed and dresses completely when we get up in the morning, so he's dressed all day. I'm making notes though of how you all handle this, so that when my going places no longer works, I'll know what to do next!
I'll chime in on the pajamas, not to tell you what to do, but because I've been there.
It got totally frustrating around stage 5-6 to try to get her into pajamas. I finally decided, what the heck. Why should she change? It's not like she played outside all day, right? Not to mention the fact that she didn't stay in bed at night anyway. As long as I got the clothes changed every couple of days, that was good enough for me. And hey, it sure did shave off some of that time it takes in the evening to get settled.
Well, that's one way to look at it. But there is another viewpoint. When she went to the NH, I told them that she slept in her clothes. When I came to visit a few days later, she was in her nightgown, and getting ready for the day. I was flabbergasted! How did they get her into a nightgown, which she hasn't worn in three years? And why? Turns out that the NH puts everyone in pajamas, resistance or not. Their explanation was that people, especially AD, need routine. When you are put to bed in your clothes, you don't 'feel' right. AD patients can better feel the nighttime routine if they do the teeth brushing and pajamas, just like they did all their lives. So even if they resist, it can overall make the nighttime better.
So that's something to consider, which I wish I had known earlier. (of course, nudies...you are on your own...!)
At this point my husband is either very late Stage 5 or early Stage 6, or both. Getting into pajamas at night is not a problem. Getting him into clean clothes in the morning was a problem, but I got him into the habit of MY pulling out the new clothes for him when I started making supper in the early evening. If I forget he comes after me because they aren't were they belong.
He has no problem dressing and undressing by himself at this point.
The thing is that I think that some kind of regular routine is working for me. He doesn't need to think about where the clothes are kept or IF he should get clean ones. But in the daytime he wears clothes and at night he wears pajamas. It sounds like I fell into a good routine on this one.