I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. In it, I share thoughts with you that probably should remain private, as they are quite selfish, but I thought maybe some of you felt the same as I do, and are afraid to express it. Many of you feel completely different, and I respec that. I would like to hear all opinions.
i bet we all have been in this position of thinking these same thoughts. when we are overworked, over stressed, overlooked and underpaid for everything we do its only logical that we get to a point of the 'what ifs were different'. nobody is a saint and we all wish things could be different and even though we think the impossible sometimes we tend to come back to earth and reality like it or not. i agree it seems so unfair and disturbing for the other half of us must die to be able to pick up the peices again. :(
Joan, Joan, Joan.....these are exactly the types of discussions that we need to have here. I'm sure that every single one of us has felt this way, although maybe won't admit to it. Alzheimer's is the saddest disease on the planet. One minute I'm so exasperated with my DH I want to drive off a cliff, the next minute I look at him sleeping, and burst into tears. I married at 19, DH was 29, and he promised me that if I would marry him and we started a family right away, we could do all the things we want to do upon retirement. Well, we know how that turned out. Waiting for our other half to die so we can have a life seems so bizarre, but it is our reality. So often I have to remind myself that I'm not the only one going through this horrific scenario, but most days it feels that way. Going to the beach just because sounds devine. If one more person tells me they admire my strength, over the cliff I go!
What's odd is that after hanging out here for so long, we express these thoughts and still feel selfish. Nah, you know it's not selfish. It's just normal.
Why the heck not? Why shouldn't you feel that way?
I feel like that quite often. I've left DW before because I felt that way. In a sacred place deep inside of me that should probably never imagine the light of day I've wished she would just quit breathing in her sleep so I'd never have to worry with this crap again. I've told her the same as much to her face. She just forgets I said anything to her. No Joan, you're alright, sister. We'll all make it to the 'other side'.
I know I am preaching to the choir, but why do we want to berate ourselves for wanting to have a life? I guess I was always a bit selfish because I said early on that I would do the best I could for my husband (and I did), but if and when I found myself depressed, morose, ill, crabby, add your own descriptive word, I was going to save myself. I had a future...he didn't. It was a fact. I didn't do anything to hasten his death nor did I do anything to prolong his sad existence.
I never spent one day on guilt for wanting to live......I didn't think it was something that I needed to apologize for. He was never abandoned...he had a wonderful life before he became ill and he was taken care of very well up until the day he died. I used day care, inhome care, placed him when I couldn't take it anymore and brought him back home when he was bedridden and easy to care for. Through it all I always looked for the silver lining....yes, I was losing my husband....that was horrible....but I didn't cause it and I couldn't fix it....all I could do was make sure that the disease did not take two of us.
So, don't worry about wishing for a life again....we all do it.
Joan, you said what I have been thinking. I feel frustrated because I have no time for myself. At this point I do not leave DH alone at all. He comes everywhere with me and wants me to be in the same room at home. We must all feel this way at times.
I feel the same way. The only thing that I occasionally do that I wish I would not do is tell someone else(other than people here that understand) I always regret it when I try to explain how I feel to anyone else.
Hi Joan, You are not alone, and I am just in the beginning of my husband's illness. Maybe it is because I've been through this before with my husband's father. After he passed my husband and I decided that if either of us were to get this horrible disease, we would jump of a bridge. I guess he forgot!
Joan I cry myself to sleep lots of nights because I feel so guilty for having those same thoughts and feelings as you discribe. Tonight I am a basket case simply because I saw an elder care attorney tday to plan for what I might hav to do in the future. I was simply trying to assure that my DH would be cared for in the event that I was unable to do it.And that I too might be able to live also. It does not seem right that we spend all our das being the caregiver and our nights worrying about our feeling of guilt .! But then again we are dealing with a DISEASE straight from the DEVIL.Only he could come up with the things we go through.
Oh, if only...... I say that to myself a lot. Oh, if only I could watch a movie or TV program without getting interrupted; oh, if only I could go wherever I want to and never have to worry about the time; oh, if only I could visit my friend in Arizona for as long as I want; oh, if only I could be with my grandchildren whenever I wanted to be with them. I could go on and on. All of that would be wonderful, but do I want that at the expense of losing my husband, even if he isn't at all like the man I married? Right now I still want him with me.
"I can't accept that he has to die for me to live again"
Joan, this reached my core. You've put into one sentence something that I couldn't even put into words. I struggle with this constantly. I keep tying to figure out how to live NOW.....:(
I feel just like all of you do...my life is done except for being a care giver. And then I get very depressed and that is not good. But, this past week for some reason I kept seeing these commercials with the returning war disabled vets and being greeted by their young spouse and young children and I felt so guility that it snapped me out of feeling sorry for myself. These young spouses have their entire life ahead of them and the raising of their children with a disabled spouse. How terrible would that be?? Let's face it most of us have seen most of our life and enjoyed probably most of it...so come on spouses...it could be a lot worse...we could be young....
Never thought I would say, I am glad I am old and a caregiver.
I don't consider myself old at 59. Yes, most of my life is behind me, but I have been sacrificing for him all our 40 years and I am ready for me. When we hit the road in our RV 5 years ago I thought maybe for once he would do more for me - dishes, cook, laundry, cleaning, etc. He does the dishes or vacuum sometimes when I am at work, still folds and puts his clothes away.
I lay in bed at night listening to his cpap wondering if he died whole air just come gushing out of his mouth or would it force air into his lungs? Morbid I know! His term life insurance will take a big jump in 3/2015 - I want him to die by then so I will have money to start a new life on, otherwise I will have just what my SS pays which will not be much.
I want him to go fast - not linger for 25 years like his dad. Yes, I feel guilty in some respects, but after giving 40 years to him in a not so good marriage, giving up my wants and dreams for his, I am ready to seek me.
I admit it - after a strenuous day out with spouse driving to out-of-town doc, discussing will-signing tomorrow ("how much of my land does the lawyer get?"), eating out, having him stay put while I visit family of friend in a coma, coming back via small town grocery & Subway, and taking his truck for a battery cable (for driving two blocks to recycling center with me which won't last long) - He says, "I enjoyed spending the day with you." I think - You spend EVERY DAY with me, all but about 4 hours total every week with me. Yup - GUILT, GUILT, GUILT - Can't I be happy for him? He gets so little joy. Only in my afterthoughts - but then I start to say Well, dear... yes, I guess you haven't been out much. I'm glad. But my head is still going - I spend all day, every day. Yes - his other health issues make it difficult. Then as I try to double check the beneficiary stipulations on his IRA account for tomorrow, my 93 year old mother (moderate dementia escalating to severe when she has parathyroid issues) calls from Assisted Living. She's gotten a letter asking about writing a summary of my dad's life for a church anniversary date in December. Can I do it tonight? No Mom, but I will pick it up in he morning. OK - write it down, I will come by before lunch. I cannot stay but I will pick up that letter. (Bet she forgets that part) Is everything I say in my head mean - I love them both. Last week, I break down and tell my husband that my heart is breaking for him. He mumbles something about it not seeming like it. Later in the week, I tell him I am starting to look for someone to help me a couple of days a week. He doesn't think he needs that .....Thanks so much for your blog. I have watched some Teepa Snow DVDs but I lent out some but lost the newest ones in the house somewhere. My friend has been in a coma 8 days and I can't help the family of my greatest e-mail encourager. Just needed to vent. Thanks again. Knew y'all would get it.
I just had this conversation with my daughter last night! She asked me how I felt about DH being with Hospice and I said that I just wanted it to be over with! and she understood! Had a new grandson born this weekend and won't be able to see him because he is in San Francisco. Daughter is getting a divorce and needs my help but lives in Atlanta. I hate this. I want to be with them but find myself conflicted in that in order to do so my DH must pass. I love him and will miss him but this shell of a man is not what either of us wanted our lives to be.
Thank you Joan for this. In my darkest parts of my mind I think of this. Then in the light of day, could I go on without him. I know I no longer have a husband. A part of me is already missing. I am a nice woman who cares for a man. A job I can not quit. Any other job I could quit but this one only has one ending. Death of one of us. How sad is that to live with everyday. And we all live with it everyday. I wish I could go visit some of my girlfriends...they all live out of town and I just don't leave DH alone other than to run around town now.
Iammana I think you may be new here, welcome if so. Sorry you had to join us, but this is the best group around.
JudithKB, I also look at other people who have devastating situations & then I get that “slap in the face’ moment & so then for a while I seem to have more compassion & patience towards my DH. But of course that only lasts so long & then I seem to go back to letting the frustrations, anger, & sadness take over again. It’s a vicious circle & I know that it will continue until I fully embrace the situation or until he is gone. Boutoutaluck summed up my feelings when he wrote “In a sacred place deep inside of me that should probably never imagine the light of day I've wished she would just quit breathing in her sleep so I'd never have to worry with this crap again.” I hate having thoughts like that, but it comes from frustration & all the other emotions we go through.
Yes Elaine that really says it. Right now, I have been flying on compassion and feeling good about myself for being so much kinder, and accepting...
then...last night I saw that dark mean look, the look that says I am in my own world, and right now I am mad and I don't know why. His eyes get kind of glazed and his voice takes on a gruffness that actually creeps me out.
This, after a couple of weeks of him KNOWING I am there , that I am THE ONLY ONE, and that I love him.
I know, he cannot help it, but when he gets those angers, that is when I start to tremble, and grab that rope of hope, or I will topple.
I am actively seeking a sitter for my Saturday market that I participate in, this is my job that pays half the bills. It is a long day, without him there I can at least have a visit with other vendors without always watching out for him, and then maybe a couple of hours to shp and have lunch.
I wish I could keep the patient part forever, but of course I can't.
Joan you spoke for me and we've only been in this nightmare for a very short time compared to many others. I am POA for my sister in ASL and she has been my closest friend for so long. Now she is so dependent on me for running errands and to listen to her complaints. My daughter has multiple personality problems and is constantly in "my pocketbook" so keeps me worrying about finances. I just think sometimes I'd like to get in the car and just drive someplace - anyplace and be alone and without responsibilities. The only way this can happen is --- we all know that answer. Another sister had taken care of our oldest sister in the her last days - this when her husband had just passed away after a long illness with lung cancer. She was so homebound with the both of them but when they were both dead she was lost. She said it took over a year for her to settle down. She traveled some and "kept busy" but she said she finally had to come to herself and admit she is alone now and has to start a new life. She is 85 years old now and her health is failing. But she says she tries to enjoy something each day. I can't imagine my life without DH as we've been friends all our life and married almost 60 years. How can I ever go on without him? so then the guilt sets in. Vicious cycle - I know others understand - thanks for listening.
Joan, as you can see we can all identify with the way you described your very normal feelings....this is indeed the saddest kind of life! I very often think about the things we cannot do anymore together, and then find myself thinking someday I will be able to...and then, I feel so badly for feeling this way. Thank you for your honesty, and for allowing all of us to express our feelings too. I want off of this emotional roller-coaster!
Like Judith said above, my life is over except as a caregiver. Everything is about him, him, him. I want something for me, me, me. I am more housebound than when my five children were young as I could pile them in the car and go somewhere. I am older than most of you, 80, so I know I could easily go before dh. Dh can't be left alone but he can take care of his adl's just fine. That is such a sobering thought. Winter is coming and I don't want to think of it here in Michigan. Maybe I will wake tomorrow morning and everything will be as it was 5 yrs. ago. Wishful thinking.
I am truly overwhelmed by all of your responses. I spoke the unspeakable, and it seems I am not alone in my thoughts after all. It is a tremendous help to me to know that others feel as I do, and in turn, it makes me feel good that I have given you a voice.
Joan, you put into words what I have been too scared to do..thank you, thank you... I was feeling very guilty for feeing this way, but what we are going through is not the easiest, and it's only normal for us to feel we want some kind of our old life back or to want to move on from this nightmare..; Everything in my life is on hold. I want to do all the things you wrote about too, I want to smile and laugh again and enjoy life before it's too late for me...my time...I feel so selfish for thinking this way, but I can't deny it!
It's not the unspeakable, Joan ... not for those who have paddled in our lake. It's just an honest expression of thoughts that, I would think, we ALL have at times. You always give voice to our innermost feelings ... which is why we come to this site, and why you are so well respected by all who come to this site!
Hi Joan, Wow Do I ever wish I could get up in the morning after having a restful sleep, undisturbed by thumping, groaning etc. half the night? Do I wish that the first thing I did was make a cuppa joe and sit by the window and watch the birds or moose or whatever is roaming by instead of mopping up smelly urine, sticky fingerprints etc? Do I wish I could finally work on finishing several projects that I thought I would have time to do after getting the kids in college? Do I wish I still had my dream house instead of moving to a new smaller house because dh's income flew south with his brain? Do I wish instead of doing yardwork, maintenance etc on three properties while dh sits watching sports or reruns of star wars on tv that we could travel together? Do I wish he still did the long-term financial planning while I just paid the bills? Do I wish I didn't have to fill out reams of forms, financial, health insurance, disability insurance, etc etc? Yes I do wish and I resent it and him and thanks for letting us vent! Sometimes I do cry myself to sleep or even wake up crying from my sleep but to dwell there always would destroy me...You provide such a valuable forum. Thank you thank you
Joan,thank you for thatwonderful blog.I had been feeling so guilty about having those same thoughts. Is good to know I am not alone.While friends(the few that stuck around) sympathize,they have no clue how it really feels.I.too. wish the good lord would take DH before he is reduced to an infant.We are all in the same predicament!
OH grendelsma, your words describe us to a "t". The re runs. ...yes, mine watches the Lord of the Rings. over and over and over often with the sound off, while I mow, vacumn, clean, work aaarggh. He used to be so handy, but just cannot get it right anymore so I just let him watch tv.
yes, south with the brain.
and yhouniey, those "friends" sure do not know how it feels, they love to though throw around sayings such as "Be strong", "take time for yourself", (ha ha ha ha yeah right), and here is a great one, "it is all for a reason"
having an adult infant is so hurtful, for us , for them.
And now, I have been looking for a "sitter" for one day a week, just to stay with him and make him food. He can do the bathroom fine. NO ONE seems to want to do it, $75 a day, and no one wants it? aaarrghhh, I thought these were hard times.
Coco, because my husband loved to watch the same movie over and over until I had it memorized, I bought more that I knew he liked. After a year, I had over 200! <grin> I would hold four in my hand in their cases, and he would choose which one to watch. Strangely, he didn't like watching regular TV - I think the commercials made him edgy because he couldn't follow them.
Check with the churches in your area and ask them if they have members who are looking to earn extra money. Several retired people would love to do it if they knew of the need.
Oh Coco i often think how great it would be if we were all near enough to just take turns watching our loved ones.Maybe they would enjoy each others company and we could all use the break.But since we are spread all over-guess we will just have to hold each others hand by way of the internet!
I totally agree with all the above statements! You almost feel guilty saying your prayers asking God to watch over him...when you have these thoughts that tumble through your mind. I think another thing that makes it harder is ...there is no end in sight! You feel this will go on FOREVER. With that in mind, you can never see an end in sight. This has been one of my weeks when I just want it all over with...I am tired of doing everything, worrying, filling out papers, worrying and being sad and lonely. I would like to throw up my hands and QUIT. But I will not quit, just keep plugging along ...waiting for something to change.
Joan- I applaud your blog for baring the feelings that we all have had. In retrospect, I yearned for the day that I would have a life, just like you. But now that it is here, I am finding that I am not really free to have that life. I hate doing all those things alone, and that is the position I am in now. I CAN do anything I want, but somehow, I lost my purpose in life, and find myself actually missing the caregiving days. With the loss of 2 of my charges, I am finding myself useless, and actually miss the caregiving. Yes it was hard hard work, and mentally challenging, but somehow, I felt needed, and gave everything I had. I perhaps should have kept a bit for myself. I am just bitter that this disease took someone so precious, and turned her into a person who was not very likeable. It is not fair, and NO ONE should have to suffer through that. So, Joan, my advice is to cherish your abilities to be able to take care of 2 people. Please realize that it will end, and perhaps sooner than you think. Try to enjoy every moment (even the bad ones), because it will suddenly disappear from you, and then it will be too late to do anything about it. Embrace your caregiving, and convince yourself that you are needed, wanted, and loved. Yes you will be stressed to the max, but when it suddenly ends, you will actually look back and feel a great sense of accomplishment. In my case, I am feeling a huge sense of failure, because I was powerless to change the outcome. I now actually miss the caregiving, and the support I had from my kids. We are all wandering around feeling like we loss the most important job of our lives. So to all you caregivers, remember that you are there because you LOVE, and your spouse is living thru you, with all your caregiving needs. The gift of oneself is the greatest gift you can possibly give, and when it is over, you will have a life....sitting by a pool reading (ALONE), relaxing at home (ALONE), and pretty much wishing that things could have been different. I urge all caregivers to eat chocolate, drink lots of wine, and test drive new medications......
Thank you Phranque, for a view from the other side...your honesty is appreciated. But please do not ever consider yourself a failure...none of us can change the outcome of this horrific disease, we can only give our best in caring for our loved ones, and that is just what you did. I am sorry for you, it has to be very lonely now... Please continue to post your thoughts and feelings. And take care of yourself.
Joan, the same thoughts sneak in on a regular basis. It's proof that our minds are not always our friends. I've finally learned to chase unwanted thoughts away. Have actually become quit good at it. Perhaps it is a survival thing. As often, comes the thought about being alone. I want it and I don't. I will not let myself think about my future simply because I can't process it. I'll end up totally alone in a strange place halfway across the country from where I spent my whole life. I brought my wife back to the town where she grew up, where her family is buried. She doesn't realize it. Everything is so foreign to me. One day, my doctor asked me how I was doing. (I'm seven years into this) I said that I'd like it to progress and end and then caught myself. My doctor had lost his young wife to a brain disease and just recently his daughter to a car accident. I'll never forget when he offered," Alz is a horrible disease. It's easier to loose your spouse to a sudden disease than to Alz." He continued, " In your case, it's almost as if your wife is already gone and now you must care for her." His words struck like lightening. They were spot on to me. He then comforted me and said, " What ever your feeling is right. Do not question it."
Ps. You all are the first people that I've been able to share this with. May our loved ones be blessed and we with more strength to carry on.
soolow, the doctor is right. Many times we wished it was over. Also, many times we wished we would wake up from the terrible nightmare and find our spice "normal." I even wished I could get in the car and drive and never have to come back home. However, reality returned......you can make it through....the road is filled with potholes though....some are big ones.
I had to learn to build a wall around my feelings. It was one of the hardest things to do. Once my husband was reduced to a two month old infant in a 72 year old body, where all he could do was open his mouth for me to put the spoon or straw in for food and drink, if I hadn't had that wall, I would not have made it through. After he was gone, I felt a huge hole in my heart - and also relief - for him and for me....he was whole again, and at peace. And I didn't have to watch him die a little more each day.
If I am being too blunt for some of you, I'm sorry. It is hard to write about it - but if it helps some of you, it is worth it.
Just do what you can to make it easier for you to take care of her. I'm glad you found us. (((((((((((((((((((HUGS)))))))))))))))))
Mary, I'm one that is helped by what you have written, so thank you.
Like you, I have built a wall.....it's the only way I can carry on. I ache to be able to think of him whole again and yet that will mean he is gone physically.
I know I will grieve the loss of him pre FTD (whole again) when he's gone & that's a whole 'nether journey.
Joan, I think you know, by virtue of living this nightmare, that all of us who are living it too, have all the emotional ups and downs as you. Everyday, I too, wish I had the freedom to make just one ittty bitty day all about me. feelin your pain and thanks for your honesty.