This week I read a quote by Terri Irwin, the widow of Steve Irwin, about life after the loss of her husband. She said, ‘If someone dies you expect it to be phenomenally sad, but I’m a very strong person and I didn’t expect to feel so afraid."
I was surprised by her comment. I also thought that she was a very strong person, and was surprised that she felt the same emotion--fear--that I've felt so often.
After DH was diagnosed, I felt a lot of fear. Maybe sheer terror would be a better description. You know that phrase, "my blood ran cold"? I actually felt that, like someone had poured a container of icy water into my heart, and I felt it run out of my chest into the rest of my body. The only thing that helped at those times was to make myself get up and move, and keep moving until the sensation went away.
I think fear is a normal reaction to our situation, long before we lose our spouses. I knew from the moment of diagnosis that we were going to be destitute (I am disabled and DH was our only wage earner). We have no family or friends here, so I would be alone with all the difficulties. (At the time, I didn't realize how alone I would be, because I didn't know how so many family members distance themselves when dementia is diagnosed.) And, of course, I knew I was facing the loss of my husband. I was facing the worst situation of my life, but without the person who had stood by my side through all the other hard things in life. Yes, fear seems like a very normal reaction.
It seems like I've heard a lot about grief, and goodness knows we all feel that terrible emotion for years. But I thought that feeling so much fear was my own little shameful secret. It helped me so much to know that a woman who could handle snakes and wrestle with crocodiles also felt fear at facing life without her husband.
This is partly or often because when you've been in a happy, long-term relationship, you don't entirely realize how it has come to anchor you, or serve as your ship's ballast. The position you are in--that of in-relationship with the beloved other--has become a integral piece of who you are in the world.
When that gets ripped away, suddenly or slowly, it is as if parts of your being which helped keep you strong, and formed who you were in the face of the world and its challenges, are gone. They don't get replaced. You heal over, sort of, like a tree which got some major branches lopped off, but you're left feeling very vulnerable.
It was a little odd, since it was a gift of strength that carried me through the 10 year Alzheimer's process, to find that that same strength did not quite translate into me being a very strong and confident person post-Alzheimer's.
I guess I am, sort of, but at the same time, I do get gripped by fear. I think it's a feature of the PTSD part of caregiving, or just loss.
Jan K, My husband has been gone almost 8 months now and yes I had almost indescribable fear before he passed. That kind of fear seems to have passed now that I know financially I will be okay. I had shear terror when I had to go through the Medicaid. Now the fear seems to be less but still there. Kind of afraid to make decisions--will they be right or wrong-- what will people, kids, friends think. And yet I know this is my life now and am totally responsible for the choices I make. I think fear is present more so as we age just because perhaps we are more vulnerable and because we have lost our anchor (spouse). For many months I felt like a boat adrift at sea in the dark with no site of land. It is a little better now but still am unsure of the future. I used to be able to plan things, do thinks, etc etc and now I am much more cognizant of just taking one day at a time and knowing that the future will be dependent on the choices I make. But not ready to make many decisions now. For me I think it boils down to fear of the unknown. None of us knows what the future holds.
Emily you said it was strength that carried you through. For me it was courage. As I reflect back on the experience, it was shear courage that I had to draw upon--courage that I never knew was there--to get me through the experience and make the decisions I did for his care. Like you post Alz I do not feel I have much courage now to face life alone. Perhaps the strength and courage we were given was just for that time and is not meant to be with us all the time. I really do not know. I do know I am less confident in myself now that he is gone. Always questioning myself, my motives, what do I really want or do not want. In some ways it is like being starved for food for years and suddenly you are free to choose from a banquet of food choices (life after Alz) and it is overwhelming. One has to choose what will taste the best and after all the years of caretaking, I really do not know what will taste best except by sampling different things and deciding if I want to include that in my diet.
This is a good thread, and I'm surprised it hasn't come up before. I find myself being very aware that I don't really have any back-up, so to speak. If I get sick, if I get hurt, if I run my car off the road, if I fall off my roof...good luck, Jack. So I find myself being very careful about everything, erring on the side of being very cautious...very safety conscious. I think fear is just part and parcel of what we're going to experience going through the 'Alzheimers journey with our spouses. It's probably not entirely a bad thing. It keeps us sharp, keeps us edgy, keeps us canny and skeptical, keeps us self-protective. It's a jungle out here...I think we can use our fear as one of our survival skills.
Jan K, “Sheer terror” is what I experienced, too. My father had Alzheimer's in the 1980s, so when my husband was diagnosed, I knew immediately what I could expect. I fell apart on the day of my husband’s diagnosis. What I feared was what I call the “horror show” aspect of the disease - the loss of sanity and of intellect that I knew would consume my husband - and the resulting chaos that would take over our lives.
Strangely, I did not fear financial disaster (probably because my parents did not experience that) but finances did become a real problem as my income steadily declined. It took me years to get back on my feet emotionally. After a while I began to stumble along but I never regained my stride. What carried me through was not courage or strength, but inertia.
Jan, Many of us have gone through some of what you are now experiencing. My biggest fear was always not surviving my husband, and what would happen to him if something happened to me first. But you have gotten through all these years so far, hard years … I know words are easy to say, but I wish we lived closer and I could somehow help. God bless…
Yes a very good thread! The fear is a big part of our lives. Will I have enough money? Where have my family gone? Where is that solid partner? What do I do now? Who will go with me? Who will hold me when I hurt and cry! Who will take care of me when I get sick? Who will love me? I to wish I lived close to you. Yes Jan K the blood does run cold!!
Determination is what I rely on. I am determined to survive the caregiving years. I refuse to let the disease have another victim by way of collateral damage! I, too, have always been a very strong person. But, I DO have my moments. Thanksgiving really shocked me. I was weepy all day. I just am not that person so I was very surprised. Now I find that I am kinda dreading this first Christmas w/o him. I don't want to be sideswiped again!
Aunt B, I find that the holidays are kind of uneven. Sometimes it's like a mist of nostalgia and sadness descends on me...but then it lifts and I'm OK again. Other times I'll feel such joy and happiness because it's the holiday season...love the decorations, love the music, just feeling cheerful, wahoo. So I don't know--but the sad feelings can catch you by surprise, and I'm as determined as you are not to be sideswiped. I am not "that" person either...feeling moany and depressed all the time.
When friends and relatives years ago used to talk about how the holidays were sad because of all the people who had died, I would say, "Well, I'm still here, and I'm going to have fun!" That is still the attitude I'm trying for.
I'm not fearful of being alone; I've been alone for years really. I don't mind being here in the house alone, but my whole life I needed alone time, so that isn't what I'm fearful of. Money. I am fearful of running out of money. One thing I'm not fearful of losing, and what I'm so grateful for, is my family. I'm fearful of watching my husband die. Seeing him like he is makes me sad but I know he's safe and in a good care setting, and when he asked me how I was yesterday and I asked him how he was, he said "good." So that is one thing I'm not fearful of, he is well taken care of.
I don't wish he was like he used to be. I can't change the way things are, I can only change the way I react to them.
Bev, really like your comment. I could have written that myself. I'm not a fear-driven person, but I do become anxious & concerned about the financial part. I THINK I've pretty much accepted what is happening, what will happen, but the money part is worrisome. We have basically nothing, so I'm sure things will work through Medicaid & the VA, but it's uncertain. The fear of the unknown.
We have our home, but after he's gone, I'll never be able to maintain it with what I'll be left with. I'm already scouring around about Section 8 housing in our area - just scouring, though, not really doing anything! The way I am about most things I guess - dragging feet.
It's been so long since I have posted here.....life is just so busy for us. Hubs is still young, 51 and has been in a memory care facility for a little over a year now. But fear is real on so many levels. Finances are a constant concern/fear as I have 2 kids in college as well as paying for hubs care. Fear of being alone, fear of all these crazy decisions I need to make. Fear of the future and the great unknown. It's hard, but i try each day to take each day as it comes, and to get out and do things and not let the fears consume me. I have a faith that God has a plan in all of this and that always helps.
Mim, YMHAonline is the website for the Housing Authority. That would be your starting point, I think. Apparently the waiting list for Section 8 is not open at all times. You have to watch in the newspaper for when the list opens. Then you submit an application (or maybe before, but I think you can't submit an app unless the list is actually open.) Then they have a lottery of the applications to see who gets to be put on the list. I know we've talked about some of this before, but you should be able to have Dan's full social security check when the time comes. And I can't remember if you would be able to take out a reverse mortgage on your house to be able to pull out the equity to increase your income. That is a possible option. When the time comes, could you sell the house and stay with one of your kids until you could get into an apartment? Another strategy might be to become (wink, nod) "homeless" when the time comes and the house is sold before you have a place to live. A homeless person automatically goes to the top of the housing waiting lists, or at least, that's how it worked in NY. Planning in advance and knowing what your strategy will be for working with the "system" to your own advantage is the way to go. Also be ready to check out what other benefits you might be eligible for...like Food Stamps, or any services that Office for the Aging might offer. You worked your whole life...you might as well get what you are entitled to when the time comes.
Samismom22, you are an inspiration. Such a young husband, and 2 kids in college...what a nightmare you must be living. Keep us updated and we will try to offer whatever help we can.
Mim Also look into senior apartments. My mom lives in gov subsidized senior apartments. They are run by the same people as the Section 8. But they work from a different list as you have to be 62 I think to get into the one she is in. Check into this if there is a list it will be much shorter. Good luck.
Elizabeth & blue, thanks for the input. Didn't think of senior apartments - didn't even know there was such a thing. Believe me, as far as the age requirement I'm way over qualified!!! As for the reverse mortgage, already have one...did that a few years ago (hoping & praying that it wasn't a bad decision) in order to keep up with home repairs & some upgrades (like 18 new windows - what a difference!). Elizabeth, I think you'll be back in New York by the time I'm ready for that, but thanks for invite!! One of our sons lives in Tokyo, so don't think I'll be living with him, & the other has a 3 bedroom house, but I really don't want to live with him (or he with me!) That would be a last resort, but I know he would do it if necessary. The unknown future really can be frightening...
I am glad that this topic came up. I am fearful a lot since DH passed. I was so busy getting things done and taking care of him I didn't realize I was fearful. I think it is because my anchor is gone. I mean he hasn't been here really for 7 years. But he was here. I have a great family too. I tried to explain to my mom how I feel. She said even though her and dad do not talk a lot in the evenings he was still there. The evenings are the worse. I can keep busy in the daytime. I can't make decisions now either. I always had confidence in what I needed to do. Now I don't know what I need to do. I am 54. Do I get a part time job or full time job? Do I get a job. If it was summer I would have more to do to keep my mind off of things. It's only been 2 1/2 month since he died. Do I even need to think of this now. Right now financially I am fine. But what does the future hold. Again, with what I have been through with DH, fear. I am fearful for my family. I do think PTSD as a caregiver. Hard to express where I am right now. Not sure this made since.
Jackiem29, Your comments made perfect sense to me. I am a little further out than you but believe me I have experienced much the same thing--afraid of so many things--especially the unknown, inability to make decision etc. But I can say that coming up 8 months things are starting to even out and the fear is not constant like it was. I just recently had an aha moment in that I realize now that he is gone my job that I do from home is becoming way too isolating and I need to get out of the house. I am 68 and still enjoy working but the need to socialize more is becoming very significant for me. I went and answered an ad online and had an interview. She called and they are waiting until the new year to make a decision but I felt so good that I got the interview. It is only 15 hours per week but it would be perfect for me. It was the first time that I really knew what I needed to do for me and followed through. It really doesn't matter if I get the job or not but just actually following through on something was progress for me. You r right that we have lost our anchor and we now have to be the anchor for ourselves. Just allow yourself this time without thinking that you should be doing something. You will know when you need to do something. It took me 7 months to know that I need to get out of the house. God bless and let us know how you are doing.