I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. Although I wrote about this two years ago, and there is a message board topic about The Disappearing Conversation, things have changed for me in the two years since the original blog was written. Not for the better, to be sure.
We have so many new members, and things have also changed for our veteran members, that I started this new thread for comments, ideas, and opinions, and updates from our long term members.
I find myself prattling on when talking with others. A result, I'm sure, of no meaningful conversation at home....one gets rather desperate for some interaction. G is still able to follow some TV stories, but with others he just tunes out after a bit...no interest in others at all. Lonely as you mentioned? You bet.
At this point I would be glad for any kind of conversation other than the woman on the second floor and the non existent she wants DH to help her with. He has brought this up Feb. 1, Mar.1, 5, 8, 11 and today. I ended up calling our neighbour who is treasurer of the HOA. He told DH this woman has NOTHING to do with ANYTHING. After he left DH said it was a load off his mind. Do I expect him to remember this NO! He did say if he brought it up again to tell him to shut up. The reason I know the dates is because it is in the computer ready to print out when we go to the neuro again.
My DH is so unpredictable about "talking" or remembering what we talk about. He usually can carry on a decent conversation about almost anything. But then he may forget it in five minutes, or by this afternoon or tomorrow. So, while I do get conversation with him - I know I'm going to have to repeat it later. On the other hand, sometimes he does remember - and will remind me of something! So, I never know which way it's going to go. Guess this is part of the roller-coaster ride.
I guess that is one of the main things I miss. DW can no longer carry on any meaningful conversation. She repeats her self when she does have a new thought. I miss being able to discuss issue. She is not able to grasp anything very detailed. I am home with her 24/7 and we go just about every where together. I do not trust her being alone. She is able to do most things except change the TV channel and she watches that most of the day. She used to like to read, but I noticed that she does not do that anymore.
There hasn't been any meaningful conversation in our house for a long time. My husband doesn't/can't have a true conversation. His speech is basically statements of what he wants to do and they are constantly being repeated. A conversation between us when we are running the errands basically goes like this:
DH: can we go to the mall to walk around? Me: yes DH: we are going to the mall. Me: that is where we are going now DH: okay, okay, but can we go to the mall Me: yes DH: okay, okay, we can go to the mall, okay, okay Me: just nodding my head DH:sorry, sorry, but can we go to the mall, okay, okay, okay We can be driving in the mall's parking lot and he will still be asking if he can go walk around the mall.
and it's like that for every single thing. The only change might be when he will add the time he wants to do something. He also is losing his use of nouns, so everything is becoming "this" or "that thing".
It can, and is maddening, with the constant repetition. All he does during the day is ask when he can do something, pace around the house, stare at the tv and ask when he can have his next cigarette. He is on meds which have helped but I don't want him doped up just because his repetition is trying my patience.
Joan, right on target again. It truly makes for a lonely life when one partner cannot adequately communicate with the other. DH can participate in conversation but doesn't remember halfway into one what the conversation is all about. Also, no continuity from one conversation to another so nothing can "build". Like Kathi37, I have found myself prattling to others and have learned to really watch this behavior. This past weekend was very rainy and cold and also my birthday. I had a bout of the blues being in the house so much without a real conversation. By Sunday night I couldn't wait to get back to work. Birthday dinner with DH and Mom (with ALZ) was especially challenging. I find myself listening to a lot of talk radio just to hear coherent speech. However, that is no replacement for the sort of conversation that can sustain a relationship. Sigh......
In company my dh was always such a great talker that it was really hard for me to get a word in edgeways. Now, I have to carry on the whole conversation. I'm always grateful for people who are kind enough to ask him a direct question and patient enough to wait for the slow and hesitant and often irrelevant answer.
Lonliness is my best friend these days...my dh rarely utters a sentence that makes any sense at all. He has developed his own set of words. I hear twinker, twinker at least 200 times a day. The repetition nearly drove me crazy at first, but now it is what it is. In 2 months he will turn 60 and I think sometimes that I can't do this another single day and then I think, how will I ever survive without him. I just keep praying that God will give me the patience, strength, and good health to meet the challenges today, tomorrow......
I have been pleading with DH to talk to me, telling him how lonely I am now that I'm home with him 24/7. It's weird - if someone else asks him a question he will answer coherently and may even talk a few sentences. When I ask him a question (no matter how many times I ask) he just ignores me and won't respond. I'm gettig tired of initiating conversation so lately we just sit together. Like Kathi37, I too find myself going on and on when there's someone available I can talk with.
Bev L - my DH will be 60 in 2 weeks and I feel the same way - how can I keep doing this and then I get panicked and wonder how will I ever live without him.
I feel as you do, some days feeling (as I do today) as if I can't go on with this, but then again, I know I'll be lost without him. Both of these feelings scare me half to death. Today has not been a good day, but tomorrow might be better and I'll feel as though I'm doing a good job with him and he will be so nice and very sweet. But, the days like today are coming around a little more often than they used to and the anxiety and fright become overwhelming.
Deb, I hope my husband won't become like yours, as far as his speech pattern. I don't know how you manage. But, you're able now to get him to day care and that must be a lifesaver for you. I don't think the day will ever come when I could get mine to go. Someone will have to come in the home, he will NEVER go to day care.
The day care is a lifesaver for me now. I know he is safe and I can do things without the constant repeating. He goes willingly and for that I am truly grateful. He has FTD and language seems to be a big part of some of the different types along with the behavior.
I feel like a ghost; he is fading away; but so am I. No one knows the books I read, the quilt I just finished, the gardening projects I'm planning. He is my spouse, I cannot seek male companionship. Couples are uncomfortable with us. Lady friends look at me like I complain too much. It is almost impossible to get away to a book club, sewing bee or garden luncheon. He plots to keep me home. This is nothing unique for us AD Spouses. But it sure stinks. Anyone else feel like a non-person sometimes?
I agree about not being fish or fowl. My husband has been in a facility for over four years. When I wanted to join a solo club (for us old folks) in my gated community I was turned down because I am not single. This is not a dating group but rather a group than has activities not for couples.
For those of you who have been reading here a long time, part of this will be repetitious -
My husband has only been able to utter five or six words for over two years: yes, no, fine, good, okay ---in the last six months, if the answer is yes, he'll say yes. If the answer is anything else, he doesn't reply. I talk to him in the morning while I am helping him get out of bed and helping him shuffle to the bathroom. Then I talk to him while I'm dressing him (please lift this leg, good!, now lift this leg, good!, now let's stand up (which I have to help him do), while we pull the slacks up. Now, let's sit back down and I'll get your shirt on you. Lift this arm, good!, now the other, etc., etc......
Then I hold onto him while walking him into the den and telling him that I have hold of him and it's okay to bend his knees and sit down. After he settles in the recliner, I hand him something to hold onto in each hand so that he won't scratch himself or bite his nails. Then, he falls into a deep sleep that I can't wake him up from until he wakes up himself after half an hour or so, sometimes longer...long enough to take his medicine and drink his cranberry juice through a straw, then he's back out again.
If I didn't have a job, where I get to have a lot of stimulating converstaions all day long, I WOULD GO NUTS!!!! I love my husband, and I will take care of him as long as I can, but he doesn't even know what "lift your leg" means half of the time.
This is the disease from HELL. I have gone into extreme detail here and in the past, so that those who have yet to reach this stage will know what is coming and be prepared.
I am no longer a good conversationalist. I don't WANT to talk to my friends and co-workers about my husband and since he IS my life right now, there is very little for me to talk about!!!
I'm not even writing HERE much, because there is very little to report during this very slow slide downhill. I really expected to lose him last September, but he rallied a little and since then his progression has been very slow.
Even my good humor shows it's brilliant head less and less! darn it!
Besides visiting with my dear friends and joking with them, my pleasure comes from the love I feel from my friends and trying to help those caregivers in this horrible journey.
May you all search for and find stimulating conversations with OTHERS. Please don't count on your spouses to supply this need when they no longer can do so. You must have someone to talk to!
You made a very good point about what do we talk about with others? I don't want to talk about my husband's disease with non-Alzheimer people, nor do they want to hear it, but much to my horror, I realized that I don't have much else in my life to talk about. Everything exciting that I do - conferences, networking, education - is all about Alzheimer's Disease.
I read voraciously, so I do discuss books with people. Geez, I need to expand my horizons.
MsAbby, I HEAR YOU!!!! :( I see my DH friends still come round but not quite as often and there are fewer calls out or in unless I suggest to him he call to see how____is doing. Conversations are almost hopeless. I can say something like, What would you like for dinner? answer..Whatever you are having...or would you like chicken...if that i what you are having. or are you hungry? I'll eat when you do..but not a real answer. Yesterday he tripped getting up from his chair and nearly hit the TV. I asked if he just tripped or was he a little dizzy.." it doesn't matter". AS to my social life..there really isn't one and sometimes my respite time is going alone to the grocery store, cleaners, gas station,or church. Like others have said, we wonder how long we can manage this challenge, and are frightened of the outcome though we know where this leads and are terrified by both answers. That is why this site is so valuable...we are all in this boat and understand when we need to have a pity party or support, vent, cry, scream, or just read how others are doing. Here we are NOT alone or in company of those who do not understand.
bluedaze, I cannot think of anything more hurtful than what that group did to you knowing your DH has this awful illness...They really don't get it how hard it is to be so alone not only with DH in a NH but to be alone at home too. There is a saying, what comes around goes around. One day they will understand.
Just read a couple more posts so here I am again! LOL...DH is off hunting for gold today with his buddies so I have a few free minutes..He will be doing a lot of sitting but at least he has some fun. Living in this Alzheimer's Hell as the caregiver of the afflicted and having little to chat about other than what we deal with on a day to day basis is rather like the person who has just suffered the death of a loved one, mom, dad, brother, sister, aunt, uncle, spouse,..someone who is especially close and dear. The survivor has a great need to talk and talk a lot to get through the grief process. We are alive and our spouses are still here and we are so in need of outside stimulation which is hard to get ( apart from yelling at the news anchors on tv these day) and just like those in bereavement, we need to talk but our friends can only take so much. The observation of our leader at a hospice training session I took some years ago said those folks have a greater need to talk than we have the need or ability to listen. We are in the same boat.
I have all that to look forward to?!! I can, at least, have somewhat of a conversation with my husband. But, he will forget it in a couple of hours. But, as far as talking about what we're going through to others, including my family, nobody wants to hear about it, not really. If I really needed anyone, they'd come in a flash, but to listen to what I go through during my day, even when it's a really bad one, I just don't feel I have the freedom to do it. I'm afraid if I talk about it too much, no one at all will call or want to talk with me, so I skirt around what I'm going through and just say "Everything is okay. There are good days and there are bad days." That's all I say. I'm so glad I can come here and say how I really feel. We're very lucky to have this place to share our experiences. Thanks so much to all of you.