Reporting in On Val

[willingtohelp]

I think there's something beautiful in what you just wrote.  It's not the time of day, the tables for two, and the trimmings that matter to Val.  It's having you.  I think that speaks so much to who you and Val are that when things start getting a bit hazy, the thing that's clear is his love for you and the thing that matters most is your love for him.  There's just something so pure in that.  I picture you and him walking the halls hand in hand, and it seems like it should be a photo on some inspirational calendar with the words "dedication" or "enduring" or "forever" written beneath it.  You and Val are both in my prayers.  (((HUGS)))

[luise.volta]

And your post brought me to tears, Clover. There is something so precious in being heard and acknowledged. So many of you have offered me that and I can't tell you what a difference it makes. You walk with me in some way.

[Pen]

You are such a strong, caring, loving and thoughtful person Luise.  I only hope that if I ever get to the place you are at in life, that I can do everything that you do for people with such dignity and compassion. 

It seems as Mothers, Wives, Daughters, and Friends, we will push ourselves to the very edge for the people we love even if it means sacraficing our own time, money and health.  And we are usually the last to see what we are doing to ourselves. Some people may say that makes us stupid and blind, I say that makes us compassionate and human. I am sorry your suppers didn't work out but glad you realized that it doesn't matter what you do with him, just visiting him is the important thing for both of you.

God bless you Luise and my thoughts and prayers go up daily for you both.  You are truly an angel.

How true, Pooh. It's hard to turn it off when one has been giving on that level for so long.

Luise, I think a lot of us are in denial about our strength and our limits. We are hardwired? taught? to give and give and give until there's nothing left. I'm glad you figured it out before you became one of the "empty shell" women. I'm still working on it...thanks for sharing your insights with us. You are amazing!

[luise.volta]

Yes, and I think that the ego gets in there too and refuses to give up. We have an equal number of men here in my community that have burned out being amazing care givers for their wives. Once you start...once you take it on, there is no way to stop. It's like an avalanche but you think you can beat the odds and stay on top of it. 

[Pen]

So it becomes our identity?...and we don't know how we'll exist without the label we've put on ourselves? I guess that phenomenon works in many areas such as parenthood, marriage, employment, etc. Helicopter parents, "Donna Reed" wives, workaholics are perhaps going through a similar thing...lots to think about here.

Some of our DILs are trying to deal with this early on, I think, and good for them...although sometimes they may feel the need to go a little overboard in protecting their autonomy, and that can seem harsh to us older folks. It'll even out as everyone gets used to it, I hope...DILs won't feel as threatened by our desire to maintain a relationship with them and our DSs, and we'll understand that our DILs are trying to avoid the loss of self that some of us have experienced even though we may have known better and tried mightily to avoid it (we did go through the Women's Movement, after all.)

Again, I'm thinking out loud. If I'm not making any sense, I'm sure someone will gently let me know

[luise.volta]

Thought provoking, Pen. For me there is a fine line between something becoming my identity and something becoming my mission. They both may look the same but I don't think I lost my identity in care giving. This forum, my counseling Website, (www.MomResponds.com), the designing of my new Web-forum almost ready to launch (www.vintageRVforum.com) and the book I am writing (Aging with Wisdom)...plus my relationships with family, friends and community remained consistent as expressions of my self during the last eleven years of care giving. So did my love of solitude, reading "brain-candy" mysteries and going to Curves for workouts. Unless I'm missing something, it wasn't an identify crisis. It was probably partially cultural, however...my generation, born in the 1920s and living through the Great Depression, is a stubborn one.

[Hope]

Luise,
You never cease to amaze me!  You - right now at age 83(?) - are doing more single-handedly than most people do at the prime of their life.  I would feel overwhelmed just doing one of the big projects you are juggling.  And you don't know how to do anything half way.......I'm sure each project is done with enthusiasm.  Where do you get your energy?  And to think you are doing all this while being a care-giver.  I'm sure while working on the most challenging stages of these projects you were the primary care-giver for Val.  You are still a partial care-giver with your two visits a day.  I'm 55 years old and tire so easily.  I've gained weight over the past 8 years from my inactivity and seem to do less and less each year out of pure tiredness.  When I was less than 45 years old, I had sooooo much energy - I felt like I could do anything.  Not any more.  I told my doctor, but he says it's just age.  What is your secret?
Hugs, Hope

[luise.volta]

Sweet Hope - Cyber-relationships can be misleading...and full of misconceptions. Everything I wrote is true. I don't think I lost my identity in care giving but...I very nearly lost my life. I will try to give you a different perspective.

Val is in nursing because after 11 years of care giving and "pushing through" my mounting fatigue, I simply dropped. I wept without reason...my energy was so low that I was unable to converse. It felt like I did not have the strength to breathe. When an insurance caseworker who was assigned to Val, suggested a home nursing service evaluate our situation with "respite time" for me in mind, I was shocked to realize that it wouldn't help because if I had any time when I was not on red-alert, I would be too tired to do anything with it except lie down...and when I got up, nothing would have changed. Our staff social worker here offered three days respite for me where Val would be admitted to nursing and I could be alone. (I wasn't sleep-deprived, I was just burned out.) Then she realized that I needed the maximum, which was two weeks. And finally as I sat in her office trying to sign up for that, weeping and unable to speak, we both realized that Val had to be moved into nursing permanently and that I might have passed the point of no return.

That happens here a lot; either the loved one out-lives that care giver because all of the care giver's reserves have been used up and he/she dies...or when help is sought, it is too late, and the care giver never recovers and is just a shuffling, lifeless shell for the rest of his/her life. I could see it in others but not in the mirror.

I have written about this on WWU and have left the site for extended periods of time...and have stopped my work on www.MomResponds.com, letting questions pile up there on several occasions.

Val has been in nursing now for two months and I am still very marginal. Yes, I visit him twice a day and walk our pup three or four times a day...yes, I post here and have caught up on my questions "over there"...but my ankle hasn't healed properly from the fracture of Nov. 20th and my energy is very minimal and unreliable. I can't drive far or walk far. I eat my evening meals over in our assisted care unit on my way over to see Val the second time because shopping and cooking are beyond me. It's going to be a long, slow process...I can see that clearly and I am still facing eventual loss.

Where you are concerned, I would not accept that fatigue is "normal" at 55. You are Kirk's age and the age of several of my closest friends and "sort of" kids. There is a reason for you fatigue whether it is medical or something else (or even a combination of reasons) and you need to look for it and get you Life Force back. If I can do it at 83, you can do it! Look closely, journal, pray and see a wise counselor. I started a whole new life at 62 when Val and I married...you can get yourself back! Sending love...

[kathleen]

Luise,

Reading your last post, I realize I have very quickly imposed on you some vision in my mind of an unending tower of strength. 

And you are not.  You are finite in your ability to cope with life problems, as we all are.  But from somewhere you have summoned the strength to give us this web site and these connections that have helped so much. 

I know what you mean about a broken bone not healing.  Last winter, I fell down on the granite step of our new retirement home and cracked a rib.  The house we worked so long and hard for, that was going to give me such strength and solitude with nature, backed up and bit hard.  The pain was excruciating and for two weeks never seemed to end; no sleep, loss of appetite, etc., etc..  I ran into a young woman in a supermarket and apologized to her for my slowness in taking my items out of the cart--she was behind me-- and she said, "Oh, don't worry, my husband cracked three ribs in a motorcycle accident."  This was an interesting connection since one of the worst aspects of life in New Hampshire are the bikes with open pipes that crack through beloved silence and damage birds and other wildlife, and I have very strong feelings about the bikers that do that,  but she and I made a human connection and I asked, "So how long did it take for his ribs to heal?"and she said, "Six months," and I thought, wow.  I'm not even half way there yet, and he's in his 20's.  And then this weekend I met with my 86-year-old friend in New York City and she told me her broken rib of 40 years ago still gives her trouble!!!  So "healing" is a relative term that we must learn to live with, and frankly, Luise, at our age, any broken bones that do not cause serious disability or worse are a lucky star.  It means osteoporosis has not set in.  It's a good omen, the way I look at it.

But you are suffering far worse burdens than your ankle.  You have, as you note, the classic and terrible burnout from being the caretaker to a loved one.  Luise, you need some fun in your life.  Can you define that?  Can you provide yourself with some relief from your feeling of responsibility for Val?  He loves you---what would he want?  Maybe it would be a day totally away for shopping or a visit to a museum or a library or a sports event, whatever gave you pleasure both before and with your life with Val.  Maybe it would even be two weeks away to really rest. Can you give yourself permission to enjoy life again, even in increments, even for a while?  Because you so much deserve to be able to do that, and I would do much like to read that you have.

In one of my previous posts I urged you to take care of yourself as a way of taking care of Val.  That's because a very VERY close friend of ours destroyed our friendship over his obsession with his wife with Alzheimer's.  I know you would not do something like this and perhaps I should not even hint at this, but the loss of this friendship was so devastating to me.  He could not let go and I watched his health decline and I watched as he lost so many relationships.  You would never do this, but I hope you can see how you need to avoid all such consequences.

I am concerned about what you describe as the cumulative effect of "pushing through."  Luise, I don't agree with you that if you have time out from "red alert" you would be too tired to "do anything but lie down."  You should, please, I hope,  give yourself permission to find some distance from the situation in order to come back truly refreshed.  You MUST give up the "either-or" scenario you describe and find other options to cope.  Maybe this would involve giving yourself permission to take a much-needed vacation to a spot you might truly love.  Really getting away.

Know that I say these things because I know them to be the truth, and because I have, in such a short time, come to care so much about you, because of what you have given to me and obviously to so many others,

Baskets of flowers,

xoxo

Kathleen

[Pen]

Hope, it isn't just old age at your age...not that I'm qualified to say, but I'd get a second opinion. I'd been feeling older than I should and it turned out to be thryoid and stress related, so you never know. We should always have these things checked out, I think. Quality of life, and all that. Best wishes; you deserve a vibrant, healthy life!

Luise, thank you for sharing your deepest thoughts on the subject of caregiver burnout. As the parent of a disabled child I know a little about this from a slightly different perspective. I ruined my health (see above) trying to do it all. I had no choice for many years; we couldn't get any help from any agency. Also, there's guilt about asking for time away from one's child; one feels like a selfish, unfit parent. Now that my child is living away from us (she's an adult) I'm slowly starting to heal, but it's taking a long time. Some of the damage is irreversible; it's hard to realize that, but I'm trying to deal with what is instead of what could have been. (I didn't ruin my health through hedonism, just martyrdom, so that's something, eh?)

There's a saying regarding parenting a disabled child that refers to "mourning daily the death of the perfect child" or something to that effect. Do you think it's similar being the caregiver of an adult with dementia or another degenerative disease?

[luise.volta]

Thank you, Kathleen - Wish I knew how to do paragon but I don't have a clue.   

Thank you so much for caring and sharing.

The care giving exhaustion and "pushing through" it are behind me. I visit Val twice a day for a total of 2 - 3 hours and the other 22 are focused on my healing. I don't have the energy to go to events or to even leave the campus but I have scheduled two trips in September just for the pure joy of anticipation. One is to see a friend for two days and the other is a three day/four night cruise: Seattle, WA/Astoria, OR/Victoria, B.C/Seattle, WA. I don't plan on going ashore for tours because it is all familiar territory but...I have booked a room with a balcony so I can sit out there and enjoy being at sea while spoiling myself with room service.  I love to read brain-candy-mysteries and interact on the Web...so a great deal of the time I am just resting. We have Sit Aerobics here, Flexibility and Balance classes and water exercises in our indoor pool so I am not sedentary. Slow but sure.

I've seen endless examples of care giver burn-out here where the care givers actually pre-deceased their loved ones or those left behind..pretty much ending up empty shells, shuffling through what left of their days with no reserves to even address recovery. I was warned...but like everyone else, I was in denial because I couldn't give Val up while I could still stand.

It's all behind me now but any exertion and I'm flat again. It may be a long road back. My son and DIL are coming to WA (home is Kauai) for the summer months. Their place is just 7 miles down the road and that will be wonderful.

Not to worry. Of course, Val is becoming less and less aware...but he still enjoys my visits with his pup and our walks in the halls together. It feels like he is slowly leaving but there is nothing I can do except support that and admire his remarkable Grace.

[luise.volta]

Pen - Yes, I really think it's two sides of the same coin. I agree that some of the damage is irreversible and that dealing with "what is" is all we can do. My heart goes out to you because my situation is about the normal course of events and yours wasn't. I also believe that there's a gift someplace in care giving. Maybe not at the time but we are forced to tap resources others may never even realize they have. Bless your heart!

[Pen]

Thanks, Luise. The way DH and I see it, every child comes with his/her own set of needs, so as parents you deal with them. For some there are resources readily available, for some we must work a little harder. We didn't even think about it, we just did it - now that I have some breathing room I wonder how we survived

Enjoy your trip. It sounds wonderful.

[luise.volta]

Pen - I can only hope that I am able to go on that cruise. It isn't until late September. There's no way I could do it now...but I love the anticipation! It's a huge ship but there will be about 50 of us going from Warm Beach Retirement and that feels good to me. I'm not up for going it alone....(most of the rest aren't, either.) Our activity director is going, too. We will be taken down to Seattle on a bus and brought back here, etc. I like that.

I haven't gone anywhere on vacation in 11 years...so it's high time! 

Three days on the water and three months to look forward to it!! 

[kathleen]

GREAT to read! I am so glad you are thinking cruise.  It certainly is HIGH TIME.

I am glad you have this plus your visiting this summer to look forward to.

Kathleen