My close friend's wife died last February of cancer. It came about a year and a half before that and they hoped they had it; but, when it came back it came with a vengence and she was gone just a few weeks after finding out it was back and before she started new treatments. Her husband is the 'one' in the title.
We are the 'many'. The many blows. The many little deaths. The many hurts spread out over years until we end up finally with the same loss he has.
I learned of AD before they learned of cancer. He brought a nice girl he's started going out with to a party recently. He loved his wife deeply but as he explained he can't bear to be alone. I get that. I have the worst years of suffering still ahead of me. I'll have years of every kind of hardship before I can even think about any kind of other life and my wife is here - I'm not thinking in terms of getting over anything. I'm thinking in terms of trying to survive while life takes her slowly a piece at a time putting almost unbearable strains on me and everyone that loves her. After I'll have financial burdens and spiritual exhaustion my friend never had to deal with.
Six months ago we all talked about who was worse off. We talk about everything and I like that. When we all got together recently there was no doubt. I am worse off.
Losing our spouse to AD is not an event. It is a long prison sentence in a torture chamber. Losing a spouse to cancer is very hard. Losing a spouse to Alzheimer's is excruciating, will try to grind the caregiver down into hamburger meat, and has lots of time to do that.
I have the vitality of a flyspeck. My interests and enthusiasms are hollowed out. I do them but there is no spark. Everything tastes like sand.
At the beginning I had the nerve to think that I could come through intact. My intellectual capacity and sheer force of will would see me through. Wrong. My spirit is as fragile as anyone else's and it just keeps getting crushed and stomped on.
Between the hurt of losing my love, and the lonliness and isolation I already feel, and the work, demands, and horrors of my daily life, and finally the realization of worse to come - I am dangling and hanging on.
Like everyone else here I am willingly standing by my mate. Whether they are in a home or at home and whether I am taking pills or just dead man walking - we are all going through the same thing.
What I realize today is that I'm not *going* to feel like doing anything. In the future I'm going to feel like doing things less than I do today and today that feels like zero already. Moments yes; but, I'm talking overall.
I've had three weekends in a row with lots of people. The last was three days at a cottage at the traditional boy's weekend drinking tequila and playing cards and kibbitzing around. I felt like myself again. And this week I've been horrid. I yelled and stamped my feet and felt waves of frustration overcome me.
After talking to some of you yesterday I suddenly know why. I felt like myself again and then I resented terribly coming back into my reality. The two year old in me is blowing it's stack. And it's right. Who in their right mind wouldn't react to this life that way?
I can save the pilgrimage to the zenmaster. I already know what he'll say. "Learn to eat sand my son."
I have this image of meeting my wife in heaven. She comes running up saying how good it is to see me. I pull out a stack of crumpled papers from my pocket. "Ya, wait'll you see the bill." I say.
I should have read the brochure more closely. The Golden Years it was called. I didn't see this covered in it and I want to know who I complain to. Oh. Nobody.
Yes. On the topic of death by AD versus death by cancer (or something else that doesn't usually take decade(s): Who among us wouldn't pick a chance to at least try to recover from the trauma, as opposed to living with it interminably?
I hear ya, Wolf K. I have also had the same conversation with two friends--one whose husband died of cancer; the other, in a traffic accident less than a block from their home. We never came to a decision on which was worse emotionally, but it is certainly clear that my life has been disrupted to a much larger degree than theirs.
My first husband died of a massive heart attack unexpectedly at age 45. I was 37, crushed and felt that I had no future. Two years later I married my beloved Charlie and as I watch him die a piece at a time, I think back 25 years and know that that was by far easier than what I am going through now. Once I accepted his death, the healing began. Now there is no healing, just an open wound that grows more painful each day.
Wolf K, I know the feelings you are going through. The 2 years before I had to place my husband were the worst in my life...and I have had cancer. When I was being treated for cancer, I already knew my dh had AD. But that was not as bad as the last few years.
During that time I felt like there was NO light at the end of the tunnel. I could not see it ever getting any better. I was so stressed and worn down that I could not even see that it would end...let alone me surviving it. I too and tough, or so I thought. You don't know tough until you have gone where we have to go. And, like you said it is such a long haul. My dh is in end Stage 6 now, and even though he is placed, I still struggle daily. I see him every day.
While he was still at home, a lady from a local orginazation came to evaluate him. I left them alone to talk. After examining him she said there was no help at her organization for him...but she would like to talk to me. I talked to her and got upset at the type of questions she asked.
Questions like: Are you happy with your life now? (she had just talked with my dh, seemed like a stupid question to me) Where do you see your life in a year? (duh...in worse condition than I am now) Do you look forward to the future? (I asked her, What did she think? My dh has terminal AD, there is not future as it stands now...so the answer is NO!)
She continued along this line of questioning and came to the brilliant I was terribly depressed...wonder what her first clue was? She then wanted me to attend some of these group conseling sessions. I said OK. The first session lasted three hours, I told them I would not turn off my cell phone because my husband was home alone. Then they wanted me to come three times a week for three hours each. I told them I could not do it as my husband could not be left alone (I live in a small town so nothing is more than 5 minutes away.) As our fellow spouse family would say: SHE DID NOT GET IT! When I told her I would not be back she got miffed that I was turning down this wonderful opportunity.
I was on the bottom.
Hope I do not sound to bitter, but sometimes that is the ki9nd of help you get.
Wolf-- After caregiving DH for 22 years so far(16 mental illness, 6 VaD) I too learned to eat sand---many recipes--lots of ketchup. But then I discovered another stage in my caregiving progression. I began to prepare for what is yet to come and in doing so am finding bits of light infiltration the Dementia tunnel. At first it comes as wisps and dreams, small wishes which I pack in my weapons bag. I accept that DH will pass away, but he will go with love and dignity, and his funeral will be what our daughter and I have planned to honor him---all (inteferring) others have no say. In his case VaD may wreck some of my arsenal, but I am building it daily now with ideas, wishes, dreams(small), and it won't get them all. My goal has always been to see him through this, with love and dignity, and to survive, myself. Losing him to a heart attack, like I did my Dad, would be sharply traumatic, and easier to recover from because it wouldn't wear me down like VaD is doing. But that's not reality. Realiy is that this will go on as long as it will and I have eaten a lot of sand. There's still more sand on my menus I'm sure. But there will eventually be pie and ice cream for dessert. Pass the ketchup.
It's amazing how I move through saddness, anger, and hope often in the same day. After I wrote that I went down to my DW and apologized for my behavior. She thanked me for making her feel better. She had been almost completely confused by everything for days and seemed completely disconnected - but when I sat down and told her I had been behaving badly and I was sorry she was suddenly coherent and connected for some minutes. It's such a confusing disease. She wasn't aware of hardly anything and yet when I broached this subject it was relevant to her and it's clear more goes on inside in it's own way than is in any way visible outside. I need to have more respect for that and not act on the appearance. It must be a strange nightmare to have AD and walk through all the broken pieces which at times make sense and at those times must be very painful to realize how lost they are. I wish I was a better person even while I know I give quite a lot.
Life is like walking through a forest of souls where you briefly touch and peek inside other souls but are left mostly living within your own. We may not realize the truths so well because nothing is as convincing as the hard surfaces of the physical reality such as the aching back or opening the can of peas. We touch, taste, see, hear, and feel all the physical things but have none of these accesses to the soul. Say to yourself silently now "What am I?" and that is your soul using your brain. I use the word to describe the idea of ourselves. The soul is the thing that looks out and realizes it is really here in this body (not the seperate them too much just to make the idea distinct).
I'm blessed or confused because I believe the true answers are always in the soul and rarely in the body which I think is more an interface between our true selves and the physical world. It may not be important whether the soul is distinct from the body. It does stand up for me that they are. The reason I think I'm blessed is because I believe in my heart that the soul is far more important than the body.
I was wrong to get frustrated but I am trying hard to do right. This is a struggle that recurs regularly in all of us and will come up again tomorrow. I realize everyone has their own ideas which seems to be the way life is designed. While we can all learn and watch each other swing a baseball bat - no such objectivity is available to the inner selves.
It's all very complicated because actions are difficult to judge. Motivations for actions are one example of this. For instance I can forgive the crime of passion but not the one preplanned yet they are both the same crime. In the same manner I leave tiny allowance for good intention or ignorance of facts.
Why say all this?
Because life is a spiritual journey in the soul and a physical journey in the body.
I am faced with choosing love. Not the love we fall into or out of which is our reaction to someone else. Not the love of our offspring which is hardwired in our behaviors. The choosing to love a human being that cannot love us back in the forms of love we are used to and the valuing of that to the detriment of our own welfare and continuation. Whether we are concious of this or not - we choose that.
The assault of the physical realities while we lose the shared love that was so important to us that we tied our lives to that person and lived with them is the battleground where our soul and that choice fight.
She's asleep now. It's 3:30 in the morning again. It was 6:00 am yesterday. The natural things my inner self became accustomed to and wants really do taste like sand. Tomorrow I get up and fight another day. And even though I know some parts of this is because it's the 'right thing to do' and I couldn't face running away and it's the marriage vows and all those other requirements - the real truth is that I made a choice.
If life were fair every caregiver afterwards would feel at peace in their soul even as they also missed the love and felt the wear. Life however bobs and weaves like a drunken sailor in ways that are almost incomprehensible or if you prefer it works in mysterious ways.
I think caregivers especially need to try to figure out how to be supportive of their own souls. Also our needs but I think that's something distinct from supporting the choice we have made again. It's a difficult but I think core to the problem topic. The only thing I've come up with so far is to try and be more honest with myself than I have ever had to be before and then try to follow the path where that leads. It's too bad that it's not easy to feel 'fun' anymore. That would really help.
Wolf K, Thank you so much for your post. This past week has been so hard on me. I was starting to think why am I here. Why am I doing this. Now you have given me my reason. It is my DH who needs me. And what ever way he is able I need him. You have no idea how I needed to read your words. I'm sorry if my typing is bad. I am typing through the tears. Thank you Wolf K you have pulled me from the edge.
You said it so well. Things have been in a turmoil around here and I feel like I'm just barely hanging on. I feel like I'm losing myself. And, I like myself. I just feel so dull. Thanks so much for putting it into words.
I'd like to say it'll get better, but I'm not so sure that it will.
ehamilton, my situation is identical to yours. My first husband was 58 when he died from a massive heart attack. I was 48. And, like you Jean and I were married two years later. Yes, this is far worse. We have a husband, but we don't. Also, the first time, my daughter was still at home. Now I'm completely alone. I guess I'm still thankful that I can go to the Nursing home several times a week and hold his hand. He still knows me . Every day is heart breaking tho.
I just had a similar visit with the Hospice mental health nurse...same questions..then the comments.."He can't stay here, you'd have to board off most of the house and store your furniture" "You would feel far better if you exercised as you have before" "why do you want this big a house?" (it isn't!)" You are not prepared for what is going to happen...plan for the years ahead" Anyway...you get the picture. I was ready to throttle her by the time she finally left! Who needs someone to tell you the obvious and then pound it in one more time?
Our lives would surely be easier if G cared at all, but he doesn't. Now, he truly dislikes me and is nasty off and on again...even with meds. He is very compliant with everyone else, but just glares at me most of the time. Where does all this hate and anger come from? No clue! This from the nicest guy around..never met a soul that didn't adore him! That no longer includes me.
Your words are so eloquent. I'd like to send what you wrote to some relatives who just don't understand why this experience has changed me, or especially why I let it change me. (like I had a choice!) Their view is that DH is still alive, so how bad can it be? They don't understand that every single day brings another of the endless pains. And then when you think you can't stand any more, you realize that it will only get worse and worse. It's like we're supposed to carry on with normal life when we have a knife in our heart.
I don't feel this level of pain every single day, but on the days I do, it would be nice if people I know with healthy spouses would at least try to understand what this is like, rather than minimizing it. Burned into my memory are comments like: "It's not like it's a brain tumor" and "I know it's hard, but you'll get through it, and then you'll have the rest of your life". It's been seven and a half years—so far. How much life or even energy can I expect as this goes on and on and on? Meanwhile they're fixing up their houses and taking vacations and going out to dinner (and making love) with an attentive spouse. I'd like them to live my life for a couple of months, and then see how glib they would be about this situation.
I honestly don't think I could live with this disease if I didn't have this group of people who really do understand. Too bad more of that couldn't rub off on the population in general.
It's shocking how many of the spouses here can speak to the difference between the swift passing of a spouse and the trudge of AD...because they've done both!