It occurred to me that after 48 years of marriage no one is every going to do anything for me again unless I ask. I am so busy being "busy". I force myself into activities to fill my day. If something is on the floor it will stay there until I pick it up. No one will suggest going out, or run the dishwasher, or take the trash out. No "biggies" but all the little things I miss are becoming a great burden. It's not much fun completing the NY Times crossword puzzle if there is no one to share it with. This disease has taken all joy away from the both of us.
bluedaze, not only are we on our own, but we have the responsibility for another life - one that is deteriorating before our eyes. There is a lot we would do, but can't because we either can't take him/her, or they won't go. Not that I begrudge that, because there will be time AFTER. Like you, I wish someone would make the decisions for me for a couple of days - like going out to eat and where, or to buy a new kitchen floor (which I did last week). The sharing of a comic strip in the morning paper always brought a smile to each of us in the morning. That is gone as well.
For the first 45 years of our marriage I NEVER picked the restaurant. Even if I said I wanted to go someplace, we ended up going someplace else. Drove me nuts!
For the last two years I've picked the restaurant every time we go out to eat. Even when he could still choose from 2 or 3 places, they were places I picked. Drives me nuts!
I said to myself just today as I went out for the errands, Jane, you are alone, you no longer have anyone, for the first time in 49 years you ARE by yourself now. You don't have Jim to talk to, to talk things over with, to make decisions with, you might as well accept it you are Now alone. I said that over and over in my mind and even out loud to myself as I drove in the car. How awful the words sound but they are fact. I won't have anyone who really loves me the way Jim loved me when it comes my time to die. Even if I die befoe he does I have already lost him. Mary, I do begrude it, not that I blame Jim, I just begrude the years it has taken from my life, and unlike you, I am not so sure there will be time AFTER. This disease can last so long that statisticly most caregivers go first.
You are so right, Everything is now my job... and I'm getting tired and discouraged. I dont' want everything to be my job. i want my partner back, But then I have to say, I married a man 20 yrs older than me, an we've been married 31 yrs.... I never expected that. i expected to be alone, really alone, long ago. I still have him here, so here we are. And i told him, recently, he took care of me for the first 30 (maybe not quite) years, and now it's my turn. (hopefully not for 30 more). My DH will be 85 next month.
I too hate that alone feeling. Being the only one to make all the decisions for our finances and our home overwhelm me at times. My children all live far away and my husband can no longer provide any emotional support. I long for someone who can comfort me when I have problems or worries. Other worries don't stop just because AD is now a big part of my life. My husband no longer responds to my moods even when I tell him what they are, both good and bad. Let's face it - no other relationship is like that of a husband and wife. No amount of support from friends can quite fill the hole in my heart. I feel like I'm in limbo, never knowing what loss a new day will bring, not free to seek a close relationship with someone else. My husband is 70, 10 years older than I am. Other than AD he is in great health. I've never known him to have so much as a cold. I however have numerous stress related illnesses. I also fear that I will be too old or ill for wonderful times AFTER,
I know what you mean. We have 3 kids and I keep reminding myself I'm a "single parent". I took the two older boys to a friend's birthday party last weekend, and I felt so out of place and left feeling depressed. Part of it was that the mothers are "stay at home moms", so it was a lot of talking about school events I couldn't attend because I work full time. I felt guilty about missing all that, although I know a lot of moms work full time, I feel like I miss a lot of their lives at school. Part of it was also talking about their husbands, one of whom was there. I realized one mom talked a lot about her spouse and what he does. It was "Jeff did this and Jeff does that." It was depressing! I left thinking, I'm a single mom, I need to accept that. Although DH tries to participate at times with the kids, he really can't and doesn't have much to do with the older boys' lives. (they're 10 and 7. Our youngest is 2 1/2.)
Every so often, I'll be having a hard time with them and I'll yell at DH to do something. He'll try but can't help much. Then I feel guilty and stupid. Why can't I do it alone?? It sucks, for sure.
Well, guys, I tell ya. My husband was the typical studious professor. Nights were spent "doing research"; afternoons when he was home with the kids many years ago were, too. He mostly didn't deal with the kids - he was proud of saying that he didn't know how to throw a baseball; he could cope, with difficulty, if I went off for the evening with one and left the others behind. He retired when he was 60 and I worked another 15 years. He was doing research (in pure mathematics) all this time, writing on his computer, etc, but paying little attention to me. We seldom went out to dinner and I cooked every night; he has never considered sandwiches or hamburgers proper dinner, so I COOKED. I think the last movie we went to in a movie theatre was Sleeper. He was "willing" to watch the news but I can't remember when he watched any other TV at night - somewhere around the end of MASH. Travelling with him was out because his leg hurt if he sat still for long plane or car rides.
He was not interested or physically capable of doing much around the house, or in arranging for it to be done; I maintained the household accounts, did the taxes, paid the bills, etc etc. He's always been a pack rat and I am not "allowed" to touch anything in his "study" which he seldom goes into any more.
I flourished at work, started travelling (I left him food, he could care for himself, he barely realized I was gone, seldom even looked at the pictures I brought back or read my journals), being part of various non-profit groups. Retired in 1997 at the age of 62 so I could travel even more (with friends, alone, with Earthwatch projects). And I said at the time I knew I'd be confined at home more in the future taking care of him, but I was thinking physically, not mentally - so I wanted to travel while I could. And I did. For ten years I went abroad about once a year. I learned to be completely self-sufficient.
And yes, it was often lonely. But I found others in the same situation as I was - I remember meeting a delightful Dutch woman in Sukothai, Thailand, and dining with her; the mother and daughter that my daughter and I met on the boat to Crete were from Japan, and I've visited them there. Many stories like that, many connections made over the internet as well. Travelling alone is its own addiction, and though I may never do it again in the same way, it taught me a lot of self-reliance.
So if you have had a close, nurturing relationship with your spouse in the past, I envy you. I don't feel that I ever had that. There has seldom been animosity, or fury, in our relationship, but neither has there been real communication. I can cope with the loneliness now, because I haven't known anything else for many years. Treasure what you HAD.
Yes, as much as I was a take charge person who often got her own way (my DH was so willing to do everything my way), it wasn't the same as now. I, too, wish for someone to bounce ideas off of, hate the responsibility for making all the financial decisions, etc. The biggest job is over, I think. I retired, packed up the house, moved us from NY to FL, changed all the doctors, banks, house things, etc. on my own and it was tough. At least now we're in somewhat of a comfortable place with all of that. But how hard it is to have someone in the house with you and still feel so so alone.
Another thing that hurts is that you cannot move on with your life, I am not meaning with a new companion, that is the furtherest thing from my mind, I mean just with life, you cannot make life plans because even though you are alone, you really are not alone. Do I make any sense??
I am there in that spot with all of you--an empty heart but a house full of nothing. the daily life cycles we deal with each and every day in this world, that impedes the ability to reach that distant space our spouses are in. I am late 50's and hope still young enough to have a somewhat decent and fullfilling life but just feel too drained emotionally to reboot that part of my life right now. even friendships seem too demanding right now. friends all have their own issues and dont we always want to discuss them, well i for one always feel just too spent to hear their trouble on top of my own. i guess i absorb the negativity too well. alone in the real world, alone in the emotional world, alone in the physical world, and full of company in the hardships of daily life. divvi
I have a long way to go in this journey but I have listened well. Even now, I am trying to think ahead to when I am even more alone. I hope to take care of husband at home for years but I keep wondering is there a hobby I can start now or some way to re-organize so that I end up with my little space. What can I do now to help myself for later? I already feel alone. When I come home from my work day and start dinner and have to come watch seconds of TV commercials because he wants to know if I have seen them. And the answer doesn't matter because he will ask me again as soon as it comes on the air again..... How can you help not feeling alone..... I was thinking the other day that I will become one of those single ladies that sit in church... and no one will remember us as a couple ..... I am starting to deal with the fact that I will be alone for the rest of my life..... Jane you make a lot of sense to me. And bluedaze I can truly understand still feeling that obligation to be there for someone who doesn't even know you there... So many people have taught me a lot on this forum. It is because you all share that I can even think about facing the future....
Sometimes I think of myself as that little engine that could. In this case the mantra is "I think I can have a life". Some people seem to handle the whole process better. The ones that seem to often have good help that gives them time to do things for themselves.
My DH is in a facility and that part is working well. However, I still work full time plus and where he is is 20 minutes from work and 30 minutes from home. I try and see him most days. That means that with the work day I am looking at a 10-11 hour day. Weekends aren't much better as I get to do all the errands and taking care of the house. So even though I am ready to move on and start a life, I don't have much left to invest in it.
The one thing that I have maintained over the years is my girls night out at the theater where we girls have season tickets and meet for a meal before going to the theater together. This has been a lifeline for me through a lot of this. Unfortunately the original group no longer wanted to do the season tickets. After thinking about it, I realized that I did truly enjoy going to the theater and found a couple of new people who want to go and will do season tickets.
I agree bluedaze, I won't leave him to go on a trip - I promised him I would be there for him. Anita41, yes it is a good idea to either join a group of something that you are interested in or pick up a new hobby. You do need something for you to help keep you sane. If you do choose something, try and pick something that you can do on a regular basis and do for the long haul and will feed your soul.
The worst is not knowing how long it's going to go on, I agree.
For those of you who want to stay flexible and not make long-term commitments, there are volunteer opportunities in most communities that do NOT require too much commitment. If you have some sort of Volunteers in Action office in your town, they may be able to find something for you. I'm glad - and sorry - I had several commitments in place before things got worse.. getting away to the zoo where I docent is great! and my friends there very supportive.
The not knowing how long is a big thing. Do I pace myself and have more of a life outside since this will be going on a long time? Or do I spend all the time I can with him since the time is short? I don't want to be sorry that I didn't do enough. But I don't want to wind up so sick that I can't live after this is over. That sounds cruel, but I'm only 55 and someday want to have a life that doesn't involve taking care of an adult who is a scared confused toddler.
I think it is much more lonely to be with someone you can no longer relate to than simply being alone. It is a painful & deep. Were I simply on my own, I would be very active doing all sorts of things. But the everyday wear & tear brings you down, with each new surprise. At least it is still for me a surprise. I went to Joan's welcome site today for the 1st time. I was so eager for information, I totally skipped that part. I too am 58. It was a great introduction. WAY too young for all of this. I used to be perky & fun, but I've seen myself retreat from the outside world as things got crazier. I don't want to lose myself to AD. I want that butterfly back that I was. I can remember working 50 hours a week & getting all else done. AND I WAS HAPPY! Now I find the effort in everything that I do.
My husband was a nice guy, but before this hit, I kept negotiating for affection. That was our main issue. I explained how everyone needs to be touched (nothing to do with sex.) I even envy you that still have the affection, I think I could put up with a lot more of this if I were just hugged once in a while. He says "he forgets." Yeah, what about before your memory was bad? I WANT A HUG! I don't care if you're not the man I married anymore.
In her blog, Joan talked about "hope"...Hope is a wonderful attitude, it sustains us when our way appears murky and devoid of a future. I have read so many messages from my dear fellow carespouses and they are filled with despair and sadness. Flgirl said so poignantly, "Do I pace myself and have more of a life outside since this will be going on for a long time? Or do I spend all the time I can with him....?" I believe before we can begin to hope once again, we must solve our dilemma over how we will live the remainder of our life. When I was hanging on to the illusion that my DH and I had the same married relationship we had for 50+ years, I was stuck at a level of living a lie that was not going to continue no matter how much I tried to keep the illusion alive. Once I let go of my false sense of reality, I began to plan a life of my own on a different path of the journey than my husband's path. I now have friends of my own, activities that I choose as one alone, make decisiions that do not include my dear loved one, have bought a car and other big ticket items as a single person. I still love him deeply but cannot live my life for him alone. I visit him often, and make sure he is well taken care of, and that is all I can do....As you can sense by my poetry, I still have my times of deep melancholy but I am determined to live my life as fully as possible.
Years ago I read one of those 'how to be your own best friend' books and I accepted then that I am the only one who will be with me my entire life. That helped, if that makes sense to anyone. Chris, my DH is 83 and 16 years my senior. When my former spouse deceased I never thought I would marry again, but Hank and I found each other and had some dear years before AD and still have enough left that I remain glad for this marriage. Would I ever do this again? Never! Two husbands dying is enough and I don't want anyone to have to take care of me if something would happen that I needed care. kelly5000 - my heart goes out to you with three children so young and AD besides. I don't know how you cope. briegull - your husband reminds me some of my previous spouse. It isn't easy to care for someone when you have received so little from your marriage. That is a tough one. Anita41 - I hope you can find a hobby. I am much more content staying put now that I replaced my sewing machine. Right now I am enjoying quilting a bedcover for my grandson's 8th birthday. We take short strolls a couple of times a day, but my DH is getting more and more not able. Today we met another couple with a man I think has PD shuffling along. I imagined us like two peas in a pod!
Ours was a good 49 year marriage. I was contend letting hubby make all the decisions. I was busy raising three children and enjoying a good Career. I always hope I would die first because I was so clueless about paperwork and all that jazz. Now that I am on my own I find that I can make all the decisions, bought my own car and am getting pretty good at home repairs. At last I am finding myself. Of coerce this is not the way I hoped it would be-but it is the hand dealt. I always believed that God would not give us a burden we could not carry-but sometimes I wish he didn't have so much faith in me.
carewife, I think you have to reach a certain stage in this disease before you can begin to think the way you are speaking. Earlier I could not have understood, but now I do.
Jane and my fellow companions on this journey of AD, I really don't understand why we have this burden of not only observing but being a part of our loved one's metamorphsis into someone we cannot relate to. We are under the added burden of having memories, knowledge of our past together, having a love that still survives under the onslaught of unspeakable duress. I also believe that when you are the main caregiver for your spouse and he/she still is living at home that it is almost impossible to determine to live your life as I have outlined. Your responsibilities preclude your freedom from being able to follow through on wants or desires for you . But I also know that for myself at least, I was steadily digging a grave for myself and destroying my life as I endeavored to sustain a life together that was no longer possible.
My husband and I had a good friend who was a Science teacher and one of his favorite sayings was," Adapt or die". what he meant was that a species had to adapt to lifes demands or would die and become extinct. I believe that applies to our situation, we must learn to adapt to our changed circumstances or we will die from heartbreak.
We may not be able to change the hand dealt to us as bluedaze wrote but we must learn to adapt to our changed circumstances or begin the process of living a life of misery.
The remainder of my life will always be one with bittersweet memories, agonizing times of sorrow, unrequited love for a man no longer with me who is gone from the beloved stranger I care for, a longing for what used to be, but I know I am determined to live life as fully as possible even with the Parkinson's Disease that I live with daily. God has not revealed to me the "why" of all this but I do know he has a plan for all of us and I must fulfill my destiny.
I also feel that part of our suffering is due to the everongoing grief that we suffer for our loved one that cannot be resolved as long as he/she live bodily. We may think that our suffering is due to a myriad of happenings but we are grieving and it will go on for as long as our dear one is with us. But that is something I have just recently concluded about this journey of ours and would like to get your thoughts on this conclusion when I can sort out all the remifications of this grieving. Not much attention is paid by the professionals to the caregiver and their needs and especially none is directed to grief in our daily lives and its effect on our emotional and practical responses.
Your words are deeply meaningful. This morning I needed something ...I have been feeling such a sadness lately... even wondering is this when I need some meds to get through....but your words have helped... I feel grief and yes my memories and even my daily thoughts are bittersweet... I am committed to caring for my husband now that he still knows me and it brings him comfort. Part of me survives by planning for the day that I will have a different life..and yet I know that the future is not promised to any of us. I am trying to build on my ability to suvive, and your words ring true.. I must adapt
I've been thinking about AFTER. What would I do if I didn't have my husband to take care of? Would I travel? Take classes? Go to conferences for my varied interests?
Right now he doesn't need much actual care. He can bathe, get dressed, feed himself. Because it is Vascular Dementia he may never need help with any of those things, and I know that if he does need help that I will get Home Health Care help for some of it. But he has reached the point where although I can be gone for a little while, I can't be gone for half a day or more, and that limits what I can or can't do. And I never know when he will have a bad day that requires that I stick even more closely to home.
It doesn't help that I've gotten out of the habit of taking the car and going places.
Am I feeling grief? For me that is a very difficult question. I haven't cried even once. I've been sad and even depressed. I've been lonely and frustrated. But is it grief? I honestly do not know.
Yes, I can admit that I'm not sure I am grieving here. We can say the unthinkable here.
We had an OK marriage. We liked one another. I'm not sure if we loved one another, except as one comes to love anyone with whom one shares a life. We both love our daughter, but each other? He was never demonstrative, and objected to my being American demonstrative. He is European and much more reserved. Some of you deal with your lagging behind LOs by taking their hand. I can't do that because we never have held hands at any time in our relationship. I'm not getting "I love you" from him. I don't know if he does love me or not. I never did.
Like I said, we can say the unthinkable here.
So why do I stick around? Well, it has been 47 years. Nothing else ever occurred to me. There has only been one violent incident and I've taken care to make sure that when we take his physical license away from him at AAA I won't be alone there. We are working out a way for my son-in-law to be present. Except for the driving issue, he has been pretty much under control. The one or two "angry and mad" incidents were never focused in my direction.
I'm working on the adapting. If I come here to read this forum, I also require myself to go to one of my interest forums and read and write there too. I'm scrapbooking again to work out my artistic needs. I'm reading knitting magazines for the same reasons. I'm watching LOST DVDs and going to a forum to read what other people have to say about specific episodes (one of the forums is doing a rewatch, so they are talking about them from the beginning). I'm wearing a pedometer and taking short walks outside whenever I can, and walking back and forth through the house if I can't get outside. I'm partially disabled and somewhat limited in what I can and can't do, but the walking is helping to make me just a bit stronger.
And I'm thinking about what I will do AFTER. Because I'm committed to there being an AFTER.
Starling, our marriage was similar to yours in that there was little affection. DH became impotent about three years after we were married.He had suffered a heart attack.Also I think it was also just no libido. Well when that happend he stopped touching, cuddling, any show of affection and slept hanging onto to the edge of the bed so we wouldn't touch. I tried to discuss and even considered leaving.No discussion!However we were good friends and travelled, entertained, theatre, and did many fun and enjoyable things together. We were friends. At times now when he is so much a lttle confused boy I feel I should hug him. But I cant. Sometime I can take his hand and give affectionate touches. I guess we never did say "I love you". He too is European.I'm thinking about AFTER, as I'm about ready to give up full time caregiving and the plan is that he will live with hid daughter. We also have the anger issue and no family living near by. I don't have any family. Its somewhat frightening...the AFTER, since it will be like trying to find a new life and somewhere to fit into.I know I will rest for a month...but what then. I have given up friends, hobbies, almost everything for AD.But...its important to think about AFTER it keeps us going today.
This was good to read this morning. I am feeling so TRAPPED in this life. My DH is particularly clingy and confused. I provided him a good day yesterday with his support group meeting, time in the swimming pool, a trip down to the square to listen to the music...and as soon as we got home he started pacing, picking things up, asking me over and over if I loved him, etc. I had been feeling that those behaviors were a result of boredom or not being stimulated enough...now I know that it is not the case and I am a little more comfortable with trying the seroquel that the doctor gave us. Some people in the support group have used it successfully. I can't follow him around putting things away and answering these questions over and over and over. I cried myself to sleep and when we awoke (couldn't even get him to stay in bed while I got dressed and walked the dogs) it was the same thing. He thinks he has a doctor's appt., not sure who I am, wandering through the rooms of the house. I just don't know if I can survive this to have an "after"--what will be left of me? I am desperately trying to get away for 3 days for an agility competition with my dogs. So far the only solution is someone who will do it, but at a very high rate...can I justify that kind of expense just to get away. But I think I will explode if I have to do this continually. There is no part of this life that is fun...and I'm considered a very optomistic person. I feel my positive outlook slipping away from me with each downward step my DH takes. He needs me for everything he does....I can't take the complete dependence on me. Oh no, he's back asking me about some name we don't even know.
We are not as far along in this journey as many of you and I already feel grief stricken and "trapped." I feel like my life is over. We never do anything, go anywhere. I can hardly get him out of the house for a haircut. Our adult children know he has AD, but don't seem to realize he is slowly dying, they don't understand the full scope of the disease and don't seem to want to talk about it. I just feel terrible and as you all know, no light at the end of the tunnel. Just feeling so sad this morning. Well here goes another day............more of the same.
As difficult as it may be to arrange to be away, I think we have to get out of here for some normal time or rest time. I've just made arrangements to go to the beach for a few days.. Its too expensive BUT its the only time this year that I'll be able to be away for 4 whole days..the very idea of it helps enormously.. and I'm boarding the dog too.
Thankfully our daughter will come spend this week. She is the furthest 'removed' from the reality of this situation and hasn't visited enough to see some of the firsthand difficulties. The fact that she is willing to donate a week of her summer so that I can have these days, is wonderful. My husband is really looking forward to her visit. I just hope they will be able to do a few things together, ride horses and round up cows etc. things they did when she was growing up. HOpefully it will be a win/win for all!! Flgirl.. GO if you possibly can!!
Sorry, had to laugh when you talked about a haircut. At least you can get him to go! My husband used to go out & get haircuts. It got so long a few years back he started looking like a homeless person. He said, well, if you don't like it, YOU cut it. So I did, and he liked it. So now I'm stuck with that job, even though I gave him a coupon for a $5.99 haircut recently. Now, keep in mind, this is a man who is out & about in his car. I don't understand why he won't go, but then, I don't understand a lot of what's going on.
Your life is not over Texannie. Your life as you knew it is over. As difficult as it is (to find the energy), I think all spouses should find something that makes them happy outside of the AD relationship. I am trying to appreciate the little things, like going out on my deck with my cat, watching the butterflies in my garden. Movies with friends (my husband never did like to go out to films), just about anything to get your mind off AD for a while.
Starling, Lost DVDs are a great escape! I just finished season 3, and season 4 doesn't come out until December 9, 2008. Can't wait. My son introduced me to Lost when I visited him in NYC & I really got hooked. If anyone wants to have some relief from thinking about all this, Lost will certainly do it.
Val, you are right life as I knew it is over and that's the mind set I need to take but even though I know that is true it's still hard to make that adjustment. I'll keep trying. You mentioned yor DH looking like a homeless person with his long hair, so does my DH.He wears the same clothes for days, but still dresses himself and takes care of his bathing etc. and I let him do as much as he is able to do. His appearance has changed drastically,but I haven't had to take on those responsibilities yet. Guess I need to be more thankful for what we still have.
Carewife, Thank you for your insight. I particulary like what you said about the science teacher and that "we must learn to adapt to our changed circumstances or begin the process of living a life of misery". That really strikes a chord with me. We cannot go with where they are going, no matter how much we try. I am making a life that is separate and where I can experience some joy, happiness and connectedness AND i know those things will spill over into the life I share with my husband. I feel like I am constantly adapting, and painful as that is, it is better than the alternative. It is a constant juggling act, but I am very blessed in the fact that I have some people to help me pick up the balls when I drop them.
This has been such a great discussion. Carewife, you have touched me deeply. And Starling, I love your no-nonense, straight-shooting style. Both of you ladies have helped me a great deal.
We are so early in this journey. But I do know that I have always believed in finding joy in life...even during catastrophic times. I pray that I will be able to keep finding joy as the years progress-as the disease progresses.
I have committed to building a life of my own, now, while I still can, while hubby is still cognizent and safe at home. Sometimes I feel selfish, but then I remember that I have to be here for my kiddos, AND (probably most importantly) they are taking their cues from me, and learning how to react when life throws a curve at you.
When I began this conversation I had no idea where it would go. So many of us just picked up the pieces of our lives and found the courage to go on. No-it's not fun-but it is what must be done. I am so proud to be part of this wonderful courageous group. Look how far we have come. bluedaze