I've been very reflective lately. Today's blog is about trying to live in two worlds - the AD world and the Non AD world. I find myself drawn more and more into the AD world, and more uncomfortable in the "normal" or Non AD world. I invite you to read the Blog and tell us how you feel about this. Are you experiencing the same feelings as I am?
In response, I'm posting a cut & paste from my own blog. I wrote this a couple days ago:
Stop Making Sense
You know how sometimes people who become stone deaf lose some of their ability to articulate precisely? Because being able to hear yourself speak gives you a feedback mechanism by which you can continue to monitor your own clarity of speech. I’m wondering if there is going to be an interesting parallel to this phenomenon in my ability to continue making conversational sense.
It is true that I tend to be quirky in my points and style, when it comes to conversation. However, I could always gauge my general comprehensibility by whether Jeff was returning the verbal serve in a way that made contextual sense. Thus our volleys stayed within a framework that--while most likely not everyone’s preferred game--at least, for the most part, did not stray into Dadaistic nonsensicality.
And now I’m not sure. The basics remain: I can ask “how was your chicken caesar salad?,” or “did you get the mail?,” or “are you tired?” and generally get a response that logically answers the question. But if I stray into the quirky, or (to me) humorous, I am typically met with a blank stare of incomprehension. So I backtrack, and try again in plainer style.
Which is fine. Ish. It’s also boring. Consequently I may still inject riffs from my old off-beat manner into the flow, and let them amuse myself only. (Although the amusement of one is not equal to half the amusement of two. It’s more like 15%.)
The trouble will be that since Jeff is still the primary backboard off which my ball bounces, I may find--some years down the road if I find someone else to talk to--that I make absolutely no sense. And that will be strange and, I suppose, disappointing.
I have to live in both worlds as I still have a full time job. Somedays like today, it is hard to be in the normal world. The girls I work with are talking about what they did last night with their spouses/signifigant others and I'm sitting here thinking that used to be me. How do you explain a bad night with an ad spouse? I don't even try. I just smile and say "that sounds like fun" or "that was really nice" etc. Sometimes I think I relate better to my ad world. Oh well tomorrow will be a better day and I will once again be comfortable in both worlds, well maybe.
Yes, Joan I can relate to that. Since Hurricane Katrina, our relocating across the lake; quitting my job, moving and downsizing my home; things have changed drastically. And I find myself withdrawing to this little AD world rather than meeting new people and staying active. Sometimes my LO comes with me shopping and different places but that is always a challenge. When I go to my grandchildren's sport and school events, rush back home to my AD LO. I go to church but rush back home right after to my AD LO. I just feel like I don't have time for extras. I was a very friendly person but now I have not the energy or the time. As I write this, I am hearing myself as being terrible..................I guess I am. But I am trying to take care of my AD LO. And except for one couple of lifelong friends moving here the same time we did, our friends remain in the past. Oh, one friend back home whose mother passed away with AD, stays in touch. Poor darling went thru alot too. Thanks to you all, I can communicate here and not leave AD home, and No one sees my tears as I share. HUGS TO ALL PAT
It's so true. If I tell someone my husband has Alzheimers they're gone... Bye... Forever... So when I'm out with people I act like my life is normal... I feel like such a hypocrite. I talk about weather, politics, pets, and alot about them... They like that... They would never understand that I'm married to someone who's mind is being destroyed by a terrible disease. Someone who can no longer change a refridgerator bulb; or manage a washer or dryer; or... So I act. But it's not at all honest. My real world is AD with all the worry, tap dancing, ignoring my own needs to take care of his... Well, you know... And I certianly am not alone in this...
McAbby, my heart goes out to you and all of us dealing with this dreadful disease. People don't realize we need their support. But we, by the Grace of GOD, will survive. We will be okay taking day by day. We will comfort and support each other online. No, you are not trying to be a hypocrite, just trying to have some normalcy. Is that even a word?????????? That's okay, We don't have it too much anyway!!!!!!!!!!!!!!!!!!!!!!!! Serious--------Plenty of HUGS go out to you! And don't ignore your needs and start taking care of yourself . You really need to for his sake and yours and because you deserve it. PAT
That's sad. I've never had anyone avoid me because of AD, but maybe I just don't get out enough!
In fact though, I do understand that it's not a bomb you just want to drop in casual, shoot-the-breeze conversation. People aren't looking for that kind of revelation in the midst of light banter, as a rule. But I've experienced, for the most part--from both friends and family--patience, understanding, and a willingess to help. I know I've been lucky.
McAbby I did have that experience of someone dropping me because of the AD. I am a young 49 and work with a lot of people in their 20s. One coworker was really needy, calling and texting me and wondering why I didn't answer every time. Finally I told her, I wasn't ignoring her, but that my life is very busy and complicated and that every night I am coming home to a husband with AD. We're speech therapists, so I figured she might understand a little. Not so much. Poor thing really didn't have a clue what to say and couldn't wait to get off the phone. I think she's only called me once since then.
But I am blessed with many supportive friends and family members and they try their best to understand and offer support. I do find the best support here though, talking with people that have had similar experiences.
As for the two worlds, I am still trying to keep ahold of the normal world. I have a great job and at this point my LO is still okay during the day. I realize this will not always be the case and it scares me to death. I feel like it's my job to go on living, even as my husband's world is getting narrower. That way this horrible disease isn't taking two of us. One of my kinder doctors told me, "I know this is hard for you to hear, but you need to think about building your own life, separate from his. Because you can't go with him where he is going." At the time, I felt like she was ripping off my arm.
The doctor's statement really stood out for me- I've never heard it described that way before, but it is so true - "You can't go with him where he is going." That says it all, and emphasizes the sadness; separation and loneliness. I can well imagine the pain you felt when you heard it.
Yeah, that's true. But, building my own, separate life? Not very realistic just now. We kind of actually have to do much more together than ever before, because it seems it's pretty much incumbent on me to keep him as entertained as I can so he doesn't have much of a chance to sit around and abhor his life. It makes the grocery shopping interesting. I have to stop every so often and regroup, because if I disappear down the cereal aisle too fast he won't know where I've gone, and I have to go retrieve him. I know, I know though. It's that emotional distancing again. And I do that even though, without physical distancing, it keeps being hard.
I hold M's hand everywhere we go in public, so she can't wander away. One time a young couple said to me "I hope we still love each other that much when we get to your age." I smiled at them and thought "if only they knew."
Supermarkets are a challenge with a shopping cart. I used to let her push it, but now I hold on to it to guide it while she holds on and follows along.
Friends, the life of AD caregivers doesn't end when your loved one is a resident of a nursing home. the days are spent as a single person though I have functioned as a couple until my husband was placed in a home in 2003. It has been a long time without him here with me but I am not asked to go to dinner with couples, my family very seldom includes me in activities, Sat. and Sun. are lonely, and I feel when I am with others that I juSt am not capable of being completely a part of the group. Alzheimer's changes us for the rest of our lives. I no longer accept anything quickly and question everything and everyone. My life is still connected with my husband and it won't be severed until he is gone physically and no longer needs me .
I am straddling both worlds right now. It is very tough. My LO is in a nursing home, so, part of the day I am in the AD World, then when I get into the car, I find myself in the Non AD World. But, no matter what I do to enter the Non AD World, AD is still very much in my mind and is making this transition very hard for me. I know being my LO's 24/7 Care Giver for so many years and now being by myself, makes it that much harder.
Over two years ago, my DH and I re-located from Las Vegas, NV to Corpus Christi, TX. He was in Stage 6 at the time, so, this was a challenge in itself. But, when we arrived at our new home in our new neighborhood, it seems most of the neighbors enbraced us even though they knew my DH had Alz. They included us in their get togethers, we were invited out to eat with them, cook-outs, parties, etc. They helped me watch my LO when he was out walking. If he walked a different way than usual, I would get a call or they would just walk him back. They would talk to him when they saw him. They made him feel accepted, another words, my friends and neighbors entered into our AD World with us. These were people that did not know us prior to Alz. They just accepted us the way we were and for that I am thankful. My daughter lives only two blocks away with my two little grandbabies, so, that also helps.
Now my LO is in the Nursing Home, I agree with Carewife, I now have to function as a single person. I am now alone and starting my life over again. After 26 years of a very happy marriage with a wonderful husband,living in the Non AD World is very hard for me to grasp right now. When I go out with the ladies for "Girls Night Out", AD is still right there with me. I still try to have a good time as I know I need to try to get back into some sort of a life without AD, but, that connection I have for my husband and the love I feel for him, makes the transition very hard to accomplish. It is not like a faucet you can just turn on and off.
So, for right now, I just continue to straddle both worlds. As we all know, "Nothing with Alz. has been easy" and this is definately no exception. Take Care
'....or are you no longer in the "normal" world?' The word 'normal' no longer exists in my dictionary. Certainly, as we all know, this disease known as Alzheimer's and all of it's cousins, has taken the normalcy out of our lives. I have followed my wife into her world so that I can take care to the best of my ability, all of her needs, whatever they may be; hunger, companionship, dry clothes, a hand to hold, a shoulder to cry on....the list goes on and on. I am not 'stuck' in her world for it is my choice to be here for as long as she needs me; for as long as it takes to make her life as comfortable as possible. I have loved her for over the 40 some years that I have known her and I love her as much today, since that very first day, if not more. Life is short. We will both be one again in due time.
Oh, Dave so true, and Glory to God for that day!!!!!!!!!!!!!!!!!Thanks for the reminder, sometimes in the midst of it all, we need to picture what we can only imagine but know to be true.
I think I was completely immersed in the AD world. My daughter used to tell me that I lived in limbo, and that was true. I was waiting, but I never really knew what I was waiting for and each day brought new problems that needed a different solution. I've always done a minimum of socializing, I like to be in my home and I'm somewhat of a loner, so I did not miss a lot of that. My family was always nearby and they understood about AD, but as you've all said, not everybody does. Maybe the people in TX were able to accept you and your husband, Kay Kay, because they did not know him as otherwise. I think that was wonderful. People who had been close would tell me they could not bear to see my DH compared to the way they'd always known him before and then drop off. Well, I had to bear it, and besides I was where I wanted to be. AD changes many caregivers profoundly, I know that's how it was with me. And, honestly, the changes have not been all that bad.
I have built a new life, I'm content, but I live in the same house and interact as always w/my children & g'kids. I do a little of this and a little of that, and I think much of what we are able to do has to do with our age. So, I still have one foot in the AD world, I guess that's why I'm on this board.
My husband and I were married for 2 years when he was diagnosed with Alzheimers. Now , 6 years later, he is in permanent care and doesnt know me. He always liked music, so I sit with him and play him music and he whistles and claps, so I know he responds to it. I visit him and often cry on the way home. I have been to different meetings with the Alzheimers Society, but felt I never fit in...this site says exactly how I feel. I feel like I am in two worlds...people dont ask me how he is anymore, because they dont know what to say. So I feel , everyone pretends I am not married and he doesnt exist. When i saw him this weekend..out of the blue , he looked at me and said..love you. It gave me a nice feeling inside. Evelyn
I really have felt sandwiched, double decker style. And toasted. Oh, and even decorated with those colorfully ribbon tipped toothpicks stabbed right through the middle of the halves to "Hold it all together."
Always a caregiver. Both my parents beginning in '02. Mom passed on, God rest her soul, in '05. Dad placed in an Alz. Care Facility in mid '04. Now caring for my husband with AD, diagnosed in later '05, and trying to be a mother to two teens in high school. Sadly, I know I'm not alone. Somewhere in there I know I should be looking to secure my own future, but we're on the cusp where we won't qualify for any substantive assistance when placement, or at least some home care or daycare is needed. So I do not work outside the home. It would cost me too much to work. My husband has needs, care that I provide to the best of my ability. My teens have needs, and care that I also provide to the best of my ability. And everyone I know, everyone I talk to about this says, "take care of yourself, look out for your own needs, prepare for your future, and get a life separate from AD."
All I do is shake my head and wonder how one manages to live for their spouse, live for their kids, and find the time to live for themselves.