"The emptiness is oppressive and the ability to have a new life seems beyond my grasp." Oh yeah. Boy, do I "get it." I'm several months further along than you are, Wolf, and I don't have any good answers yet…but I think we have to just let it take the time it takes, putting one foot in front of the other every day, and groping through the fog and mist. I am not a particularly depressed sort of person…usually…but this situation is throwing me for a loop. I realize Larry's not coming back, and I realize that the caregiving sucked so much out of me that I'm not sure what's left. Just take it easy, be good to yourself…try to eat and sleep right, and get some exercise (preferably outdoors, if the weather ever moderates.) I think we have to re-invent ourselves after our spouses die, and that is hard. First of all, grief sucks up all the energy, and second of all, it is hard to figure out where to go from here. At least on this website there are plenty of people who understand, and we can support each other.
Wolf and Elizabeth, I have a story of hope to share with both of you later. One of my "Zebra friends" has finally reached out and asked me to go to lunch so I'm going to give myself an escape out of here and will post later. I deserve something enjoyable after all the hard work of clearing the driveway from the snow explosion.
As Elizabeth said, we do have to re-invent ourselves after our spouse dies. I have had to do it - and it's hard, but I am progressing - daily. I find I am a stronger person than I thought I was. I can attest that there is life 'after'.
I'm going to answer Myrtle seperately. InJail, think of those around us who actually reach out as putting their hands into a buzzsaw which is us. Try not to throw anyone reaching away no matter what stupid things they do/say. They're going to do that.
Elizabeth, that's how it is right now. My focus is to start taking in it's over and in my mind define myself by whether I keep falling down or keep getting up. I have a long list of things to catch up on. Things I need to attend to are everywhere I look. I find myself going to her urn in the living room and touching it where part of me is still taking in that this is real. I'm completely clueless as to what my life will be.
But it's over. I did what I could. It's alright to focus on my own happiness now and is even important without any provisos. I'll figure it out in my own time and in that time I can help myself by figuring out those things I can and helping myself understand what I believe in. Like going to New York. I wouldn't just stare into the empty chasm of what you will be doing there. I would go believing I'll figure it out.
Myrtle, I think of it not as grief but a cord of intertwined clinical negatives that come with dementia caregiving. It's the cord in total that I think meaures in intensity and duration.
We usually associate grief with the loss of someone very dear. When we learn of what this is then we live in hopelessness which consciously articulated or not brings grief into our lives. We go through years of losing pieces that really are lost and many of those are individually grieved. Then they pass and that grief happens.
Think of the twins, anxiety and stress. I think of anxiety as feeling anxious inside. I think of stress as feeling oppression. They are different. In December I had anxiety. Part of that was how long I was under stress and that I was under the stress of arranging her funeral and knowing she had stopped eating twice. But when that computer went I was so anxious I couldn't stop shaking. It was too much right then. I later swapped out the stress of her health and paying those bills for the stress of being thrown into my vacant life.
Depression is an actual condition. I think of depression as a morose molassas that weighs everything down. I would be willing to bet almost all of us have that to different degrees at different times.
Lonliness. Almost everyone loses friends and family to some degree for some time. Our needs and our situation explode our strain by a factor of dozens of times from our prior normal lives and it's a current boundry of society that most can't make that jump. For us it's like all the lights going out one by one where each of those is likely hurtful to us. Our partner increasingly can't give us the meaning that was the relationship and that is a painful path of moments where important nuances went and where we realized that.
Hurt. The one I've never mentioned but which is the beating up in the alley references I use. We keep getting hurt which I think of as a blowtorch put on our feelings and our trust. We have feelings and they get hurt so hard and so often that many of us withdraw, block, protect our feelings as a survival mentality that is actually real. Hurt isn't what most would call a clinical condition. That is unless we brought psychologists and psychiatrists into the room.
There are positive strands in that cord too. Think of the cord as the totality of emotions running. We tend to only recognize positives and negatives that occur in the moment because we consciously notice them. That's true that moments make us feel bad or good; but, we're talking about the deeper, longer running emotions and while positive emotions wouldn't come out of the experience of dementia directly, we have our own positives running. I would call a feeling of love continuing for our spouse an example of a positive emotion that is part of the cord.
Here's a problem with assessing this stuff. It's all interwoven and varies by the day and by the hour in it's overall intensity and in it's tonality. In a single day we might go through the whole range and whatever meets us at a particular moment gets that.
These aren't the fantasies of a tweeny. These are certifiable unhealthy conditions we are surviving. They demand serious respect. And they should be worked on to make sure we see that we are under siege in a real way - and that all of this is a direct affect of dementia and nothing else. Wave a magic wand to make our spouses whole and wipe out this part and all of the conditions we referred to as grief disappear in the same instant.
I don't know how others will deal with it. I know that right now if something big happens I'm going to have a serious reaction again. I stopped visiting Dianne for months at a time when I felt the need to focus on me. Often focusing on me just meant protecting myself and trying to find little pleasures and sorting through the rubble trying to make sense or accept a piece. Those breaks always felt like I took a step.
I've spent three years this April when I hit bottom (which turns out was the bottom) and once I really did feel inside that I want my life, I've been doing exactly what I've said everywhere here. I fight for it. Sometimes with a sword. Most of the time was tiny steps opening up to little things that worked or failed. Once I started I never looked to arrive and I never felt sorry for myself again in the serious way I had.
I believe you fight this not by wanting to be happy again nor by engaging any occupation. I believe you fight this by loving something right now. It can be anything whatsoever.
I got the cats for Dianne. I wanted to travel. They never gave a flying about Dianne. I was healing the abused one and I took sufficient care of them. But it is only when I loved them that we all got rich. It's only when I opened to movies and basketball that I turned on the TV and as recently as this week that is still painful at times but I wanted and so I was willing to be hurt and both those meaningful worlds are growing in richness. I'm not trying to avoid the pain that is legally mine. But this pain is all Alzheimer's and I don't have Alzheimer's. I will pay whatever price but they are out of bullets because she is dead and the only one with bullets in their gun now is me. Alzheimer's doesn't die with the patient because it's affects are still within us on that day. I don't have to use my gun. I just have to start walking away even if I don't yet know where I'm walking to.
"I believe you fight this by loving something right now. It can be anything whatsoever."
Wolf, the only thing I love right now is my husband. But the things you mentioned - anxiety, stress, hopelessness, depression -- are threatening to overtake me. My husband has had a few setbacks in the last few weeks and a scary incident two weeks ago when he was taken to the hospital. That caused me to discover that the facility had neglected or failed to follow up on some items. Because of that, I had to take him to an outside doctor and on the way back into the facility, he slipped on the ice and broke two ribs. I have completely lost my sense of security and have become overprotective, visiting him twice a day for a while. Now I'm back to once a day, as long as things look OK during that visit. I asked for a special care plan meeting, which will be held later this week, and hired a geriatric care manager to go with me. I think her main function will be to pull me off the ceiling.
I know I need something else to love and focus on. I loved our old cats dearly but they both died within months of each other last winter. I would love to have a fuzzy creature but I don't think I can handle a new cat right now -- I'm too scattered to pay attention to anything. Other than my husband, my priority must be my work. I'm self-employed and have neglected my work badly and brought in no income in months. I've doubled the hours of my office assistant in an effort to get back on my feet.
Compared to the spouses of many others on this site, my husband is doing well. Despite the recent setbacks, he can walk, is continent, is delighted to see me when I visit, does not cry when I leave, and just loves the many musical performances at the facility. If I cannot hold myself together under these favorable circumstances, what will I do later? I read about the spouses who are failing badly and the ones who have died in just the last two months and I feel awful about posting such a question.
I think that most of my friends feel sorry for me and the situation but they have no idea how to support me and I have no idea how to tell them how they can support me. There really are no words that can make me feel any better. My life has been shattered, my husband is gone from me and I have been in the pit. I do have one friend that told me she would come any time I need her but nobody can fill the hole that has been ripped on the canvas of my life. When I go to see him he still seems to know me but he is in such rapid decline that all I can do is hold his hand. He cannot walk nor feed himself. I have not been able to go see him because of bad weather. After all the snow that people have gotten in the north it seems ridiculous that we cancel everything when we get three inches here. There have been over 100 wrecks because nobody knows how to drive in snow and ice. I did not want to get on the road and drive for an hour so I have not seen my husband for a week. I seem to just feel numb on the inside and feel like a robot going through the motions. I am afraid if I let myself feel I will disappear into thin air.
Myrtle, I just ran across a picture of my husband in the nsg home on a day when I had taken our grandsons to visit and have lunch with him. It was a really good day. He was so happy to see the boys, ages 4 and 2, and they had so much fun with him. He could still walk with assistance, was still continent, was so excited to see me come to visit, did not cry when I left and dearly loved the musical events there. 18 days later, he passed away. It was such a blessing to see that photograph of such a happy day for all of us. All this to say, not everyone progresses to the late stage of being bedridden and totally incapacitated. I was totally shocked at his sudden demise. In hindsight I think it was a blessing for him. Just love him while you still have him and don't worry too much about what will come. Just take each day as it comes and focus on what he needs for that day. You will drive yourself absolutely bonkers by worrying about all the what ifs to come...when they might not actually happen at all. My bet is that you are probably much stronger than you think you are!
dellmc53, Don't apologize for staying off the roads in bad weather. Although I'm a New Englander, I once lived in Alabama and spent a lot of time in Georgia as well. The public services in the South simply are not equipped to deal with the conditions you describe. They don't have the plows, spreaders, salt, sand, etc. they would need to do a proper job. In the South you are also more likely to have ice, which is worse than snow. So staying of the road is the best choice. I hope that you will be able to get out to see your husband soon.
I completely understand that your friend cannot fill the hole in your heart but I'll bet she would be able to distract you for a quick lunch in a restaurant. Just having a change of scene and talking about something else would give you a break from your constant misery. I know this from experience.
To dellmc5. You are going through a terrible time. There are just no words. Your strength and common sense is an inspiration to me. Please do not…repeat…do not drive on those unsafe roads to go see him. I know it is hard, but it will not do him one bit of good if you get injured. Wait for clear roads.
Myrtle, you are doing everything any one person could possibly do. This caregiver role is not for wimps, as most of us know only too well. Try to do whatever you need to do--whatever works for you to manage your stress levels. Maybe trying to get back to the job is a good thing, if you can focus on it. It may turn out that it gives you a break from all the Alzheimers stress.
Wolf, it is so soon for you that it is natural to be "clueless" about where you are headed. I've read people's posts where it's been a number of years and they're still foggy. Take comfort in that lapis lazuli urn and that you were a wonderful husband and caregiver. It shows in every post where you talk about Dianne. And thanks for the wise counsel about New York. I plan to plant a beautiful flower garden, play my harp, and write historical novels set in the Hudson Valley-Lake George-Lake Champlain-Quebec area during the years from 1690 to 1763. (Yeah, well, don't everybody get too excited…I have big ideas, but maybe I won't succeed…but that's what I want to try to do.)
Wolf and Elizabeth, The hopeful news I wanted to share with you is the story of a very good male friend. His wife did not have AD but he endured 15 years of caregiving from 4 botched back surgeries that resulted in her becoming bed ridden. They pounded her with tons of pain meds which finally resulted in 6 months of in home hospice care from pancreatic cancer. He was not about to live the rest of his life alone and met a lady on a Christian online dating site. I think a lot of people thought he was nuts but he corresponded with her for two months, they finally met in person and got married one year after he was widowed. His new wife was also widowed and very wealthy and they are actually a better match than both of their first marriages. They are in their late 70's and having a ball. Life can resume after death of a spouse. I hope that will both of your paths in life if and when you feel ready to move on.
Wolf, you were right about the "Zebras" not getting it. I remained civil.
Mrytle I think you described me when you said "constant misery". I just cannot seem to accept the fact that my husband who was my rock has disappeared. I was always the artistic musician who played the piano while he cooked for me. We were a team and I could depend on him to settle me down, help me focus, plan for the future....all of that! The half that is left is ME and I am not complete. I never realized how much I leaned on him until he started the slow decline. It began so gradually that I just adjusted. I think I read one of Wolf's posts that for the female it is usually now filling up the car with gas and doing those sort of things....I finally had to learn to take care of everything and he just slept most of the time. Taking care of everything was NOT in my plan and I am sure it was not in anybody elses on this website. I do not feel strong at all. The financial part of all of this has had my head swimming. Dealing with all of the questions of how am I going to live in my house and pay for this nursing home have overwhelmed me on more than one day this week. I have found courage to face just one more day of this nightmare by reading your posts. Thank you Elizabeth...we are once more iced in. Everything is closed and I called and talked to his nurse yesterday. She said he was doing ok. I do not know what that means but I am glad that he is safe . And yes I think I will call my friend and see if we can go out to eat when this weather clears up.
Not part of some of the above comments, but fits the Feb. 2015 theme (I know it's March now, but this occurred in Feb.) I just got back from a week in Florida visiting my daughter and son-in-law. A big change after the 6 feet of snow we have here in Maine (and more coming tonight). My wife seemed to know me when I got back and has chattered a lot. I just wish I could understand what she is talking about.