I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. It was written from deep within whatever heart I have left. Please post comments here.
Dementia has stolen all the best parts of our marriages. What is lost is gone forever. The hurt is overwhelming-if we permit it to be so. For a while after my husband died I was angry at the flowers for blooming. When I was so miserable what right did the rest of the world have to be happy. One day the fragrance of my magnolia blossoms was overwhelming. It was at that moment that I realized that my heart was not yet dead. My world as I knew it was over-but it is time to still enjoy what the rest of my life will be like. I am slowly finding that I still care about living.
Joan: You have written a timely article and exprssed the feelings of many of us. The rages and anger in my case went on for so long that I didn't like my DW at all. Someone recently said that she 'hated' her husband when she was caring for him. I can relate to that also. Since she has been in the Alz (memory) unit, she tells me over and over how much she loves me and I really beleive her. But, I am really having to work on my reaction. I haven't automatically responded as positively as I maybe should, but, I am working on it.
I have found my self becoming more impatient with other people and being more critical of what others do and beleive and I don't like me doing that. So, I'm working on that too.
It is hard to be pleasant, positive and loving when you are so unhappy living alone in a new (different) city.
What you describe Joan is how children and adults who are abused become. You put up a wall around you for protection and self preservation. I did that as a child and I don't think I really have ever let it down. Oh, I did some through out our marriage but after his unfaithfulness it went back up full height and had only inched down a little with AD came. I think since Nov 2008 when we got the final word the wall went back up. I am just now realizing how it has effected me, mostly by not doing more than is necessary causing the weight gain. A few weeks ago I realized it. I told hb the other day that I have wasted over 1 1/2 years that we could have been doing stuff while he still could and now we need to start while he can. Saying is easy, doing is not. Maybe I fear I will start to enjoy life then this disease will force this 'gypsy' to settle down again. Is it worth trying to enjoy what time we have or just continue to sit around waiting for him to get to a place he can't do stuff, sit an wait for him to die?
Yes, this disease causes me to put that wall back up that has been there most of my 57 years. It is that wall that makes me wonder if I could ever truly be happy cause I haven't in my life yet.
joang - seems like our experiences are similar. When I first joined this site, I was so envious of the sweet, kind, caring husband you described and the events you were able to still do together. I was going through my fourth year of living Hell. My husbad had been like your husband, and I missed those times so much when I saw your good experiences.
Then the AD monster came to your house. I don't think that there are words to express how awful that is, how hurtful, how much it destroys even the good times from the past. He would tell me he never had a good time with me, etc. It wounded me so. I have felt your pain - as well as others who have had to endure this awful behavior. It is such a shock.
Ours escalated into him shoving me twice - to the floor - and a change in his meds. He is still negative, gets mad at me at any second, but he is able to realize it at times and later tell me he is sorry. It is much easier to live with, but the wall always has to be up, because I never know when that monster is going to jump out at me again. I can't let my guard down - nor do I think I should. This is about self preservation for me now.
I would LOVE to go back to "oh, this is wonderful again" - but i can't. He isn't able to do that on a good day and I would be hurt all over again.
Dean - I can relate to what you say. Being with my AD husband 24/7 and him being so negative, I find myself sometimes being an old cranky person at times when I am out with others. That is not my usual demeanor. I guess this AD is a family condition and it is hard not to pick up some of the negative aspects of it even tho I try not to.
And I used to think that AD was just about forgetting and misplacing things..........
The thing that occurs to me here is antidepressants. I am not on anything except St. John's Wort, but I did give Lexapro a VERY SHORT try. (Could not tolerate even another day of the hot flashes and fatigue it induced.) But what I recall the Dr. saying to me about the action of such things is that they "make it so you don't care." I hadn't really heard it put that way before, and I'm not sure that's the effect they have on everybody. Furthermore, I am certain that they are sometimes the best alternative in an untenable situation, but I wonder if this contributes at all to the apathy some here are describing, which reaches beyond blocking out the pain of losing a spouse.
I intimately understand "The Wall," and how we function at a layer of feeling that keeps us from having to go THERE...there being the place where we will have to again feel the pain of what we've lost. But, despite my avoidance of those feelings, and dance steps I've learned to skirt them, they are there, and can be tapped into at will, or accidentally. Nor do I feel blunted against the empathetic heartbreak caused by seeing people hurting in situations other than mine.
Which leads me to wonder: Could the action of antidepressants (which is, fortunately, temporary) be responsible in any of these cases, or--if not, or if you're not on them--could it actually be a symptom of sub-clinical depression that mood and reaction are suppressed in regard to any stimulus?
It also remains that "the wall" is going to be of a different shape and material, depending on who we are and how we built it, so we will all experience it in slightly different ways.
Maybe it's not that your heart has hardened, but the scar tissue it has accumulated just means that it doesn't work as well as it used to. Certainly if another part of our body, like a hand, had accumulated wound after wound after wound, we wouldn't expect it to be as flexible and reactive as it was before it was injured. I think our spirit (or our heart) reacts the same way. In time it will heal more, but right now for self-preservation it is automatically protecting itself the best way it can, which is to avoid another injury.
I think my heart is no longer as open as it used to be. When I hear someone go on and on about what a disaster it is because their latest hair color didn't turn out like they expected—and this is usually somebody who doesn't want to hear anything about what living with dementia is like—sometimes I just want to smack them. We are expected to be sympathetic to all of the little dramas in their life, but we're not supposed to talk about the fact that a bomb has gone off in our own life. I hope that my closed heart will get better in the future, but I'm not really optimistic about it happening. A lot of the caregivers that I know personally from support groups do continue to have problems with this. It's almost like we have come home from being in a war, and are expected to have sympathy for someone who's afraid of a bug. (I do sometimes wonder if it's possible to develop post traumatic stress disorder from being a caregiver.)
What I am fearing is that these walls I have had to build for the last 4 years - and there are several and they are thick - will come tumbling down when he dies - like several of our spouse family here has had happen.
It is very hard to maintain a wall against an infant, even in a 6 foot body. <sigh>
I have found that antidepressants don't make me not care--they have allowed me a clearer focus on things without going over the top all the time. Also, I take citalopram (generic for celexa) and one of the reasons the doctor gave me that was it helps hot flashes in some women. It has done that for me. So I got two good things out of taking an antidepresssant.
Charlotte, you hit the nail right on its head - "You put up a wall around you for protection and self preservation. I did that as a child and I don't think I really have ever let it down."
I've lived with that wall for 67 years. I was raised in an abusive, alcoholic home and my first husband was a clone of my Dad. I "loved" Claude and I "love" my kids and family but only to a certain degree. I can truthfully say I haven't loved anyone totally or even myself for that matter because of that wall.
I was diagnosed with fibromyalgia in 2000 and was put on several different antidepressants over a few years to help with the pain/insomnia. Nothing really worked until I was put on a low dose of Wellbutrin in about 2004. For the first time in my life, I started to really feel and the wall started to inch down a bit. When AD reared its ugly head, I was able to function and care for him, but I always had the wall to retreat behind when the going got rough. It allowed me to keep him at home when I should have placed him when he was at his worst, and it allowed me to keep him at home with hospice help until the end.
I've been a widow for nearly 16 months now, and everyone has told how well I am coping or have coped with Claude's death. I did a good portion of my grieving behind the wall before he passed on. With the balance, the wall is always there when I get overwhelmed.
Wow - you really hit what I have been feeling. Excellent analogy about the wound and scar tissue. However, I AM optimistic that my heart will get better later on. It may take a long time after this nightmare is over, but I do think and hope that once my grieving has subsided, my heart will be somewhat healed. But you are right - the scar tissue will always be there.
I was wondering if that was just me... feeling like I have no emotions or feelings anymore. Glad to know it is not just me! I hope one day I can find/feel joy again, right now I feel like a robot (and I am not even on any anti-depressants, maybe I need to be!) Like Barry Peterson said in his story - "it is like going to the same funeral over and over..." I guess if we did allow ourselves to feel, our minds could probably not handle the ever present grief, frustration, anger, etc. Guess it is better to just be numb.
Jan K--You have touched on something that has also happened to me. Your example of someone complaining about something trivial--that their hair color didn't come out the way they expected--and how it annoys you. I feel the same way. It seems that often, I hear people whining about their problems, something relatively minor, and I think "how would you like to trade places with me"? Dealing with dementia has made me look at things from a different perspective. I also have little patience now for friends who are completely dependent on their husbands and don't make any attempt to learn how to do anything for themselves. It's like they live in a bubble--they don't seem to realize what a risk they are running by assuming their husband will always be there to take care of them. I'm so glad that I was somewhat involved in most areas before dx, and yet it was still a huge challenge to get a handle on everything.
For me it is the taking over one more job. Especially when I didn't even realize he was doing that job, or that it was a job that needed doing.
Even now, after a huge sudden decline, I'm finding additional things that he used to do, that I now need to do. Like bringing in the garbage can after pick up. I'd taken over taking it out, but now I also have to bring it back in the next morning. So odd!
Starling, I know what you mean - just one more job! I have to take out and bring in the garbage cans now too. And check that the doors are all locked at night, thermostat set, make the coffee, and more. Gosh, that sounds like a whine, doesn't it??? But, as we take on "one more job, then one more job" - it eventually becomes just too many jobs to take on. God help us all.