I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. I'd like to know if anyone else feels as I do and how you cope with it. Please post comments here.
Joan, you have accurately captured my feelings in your blog today. There are days when I just look at him and cry because we will no longer be "us". I fought hard to have him at home and I cherish his presence even though he has limited interaction with me. I knew I was starting to let go when he appeared as a person with dementia and not the person he used to be in my dreams.
"It isn’t what you have, or who you are, or where you are, or what you are doing that makes you happy or unhappy. It is what you think about. " ~ Dale Carnegie
If reminiscing was bringing me unhappiness - I would stop doing it. We do not have much control with this disease (which is why it is particularly hard on a control freak such as myself). But we do still control our thoughts.
One day, when your DH has passed, the reminiscing WILL bring happiness - I would save it for then.
"With death, there is finality. Closure. An end and a new beginning." When our much loved spouse dies the life odometer does not magically reset to a new start. After 51 years I am not ready for a new begining. The physical loss is staggering. The hurt lingers. My husband was not really here for many years-but his body was. Death is so final.
We can't control the thoughts that pop into our heads. But we can control what we do with them, once they appear.
I think first you have to recognize that, at this point in time, theses reminisces are NEGATIVE thoughts. That’s a bit counter intuitive because normally reminisces of happy times are positive thoughts.
Then you should treat them the way you would any other negative thought. Everyone has their own method of squashing negative thoughts when they enter their mind.
Personally, when I have a negative thought, I try to cut it off immediately, and replace it with a “count my blessings” inventory. Again, I know that sounds counter intuitive given your situation as primary care giver for both your DH and your father – you probably don’t FEEL blessed. But I have found what my mother taught me has always proved true – there is always someone in a lot worse shape than you. My blessings list: my children are healthy and safe, I wake up every morning to an indoor bathroom with running water, my country allows me to freely exercise my faith, I do not have to wear a burka or put up with being beaten by my husband, I have a full belly, I have a roof over my head, etc. And for each of these blessings that I am enjoying, I thank God for them, and I pray for the people across the globe who are not enjoying them.
My DH’s condition gives me many opportunities every day to practice this skill. And there are times when I forget and allow my mind to run away on the negative thought train – but I always regret that. That train can get to running very fast, very quickly. So far, nothing good has come of riding it.
This holiday season has been especially stressful for me. I don't have my buddy to help with the holiday tasks. He was the one who did some of the gift selections especially for the men and boys..He would look around and make quick business of it and made outstanding choices. Now I have to figure that out. I don't think for sure he even gets it that the Christmas season is in progress. Oh he sees me mailing out the trinkets to the kids and the goodie bags for neighbors and friends..but ... And then the thoughts of ski trips or cross country trips come to mind..things we used to do that he has no real interest in now..all it does is make me sad. I have figured out what I'll tell those who ask " what did he give you for Christmas?" I know there is not a snowballs chance he will get out and I don't really expect it..so when they ask that cuz I just know some will...I'll just say he gave me " all his love"...
A very good blog Joan. And I hate to tell you but you might still be in the early stages. You will probably have a long number of years to go through this death of your LO. It can be so hard on you and your family. My Carol is well into stage 7 and now in a nursing home. she no longer comunicates with words, not even much babbling. She is having trouble eating even with being fed at each meal and snack. She forgets to chew and has a mouth full of food that needs to be chewed before she tries to swallow. She still walks in her Merry Walker and it is a real blessing. It could be so much worse. It is even turning into a major blessing in our lifes. She can't talk but she communicates with touches, eye contact and if you are lucky, she will give you a hug. She shows so much love to other people that it is her primary claim to being such a Blessing to the staff, other residents and to the few friends that go see her.
I write about this in Carol's blog. She has a better ministry than most of us ------with latter stage of Alzheimer. A real God Thing. I don't have any real advise for the situation but I do understand exactly what you are saying. You know me, I am a PMA person but sometime it is hard not to have a NMA.
There are times and places where it's worse. Often, I'm able to stay on the caregiver, or independent-person plane, and just not go there. Sometimes I can't help it. Holiday things do have a way of bringing out the unwelcome nostalgia. Last night we attended the Annapolis Chorale's Christmas concert, and just being there evoked the old thoughts of how things "should" be versus how things are. Made me lonely.
Joan, just think of how our spouses must feel. I am sure there are times when they are aware of their decline, and aware that they are not the person they were or want to be, and also mourn for the caregiver who is giving love without getting any in return. Mourning is expected, but it should not consume ones life. Every person has a "Period" of mourning, and while that is expected and proper, it cannot dictate the rest of our lives. Part of your heart will always mourn, but you cannot live your life wishing it were different. Accept what is, and make caregiving the most important thing in your life. Embrace it with passion and determination, and you will be rewarded to know that you made a huge difference in your spouses life. It is easy to love someone who loves you equally in return, however, loving someone who cannot reciprocate is brutally difficult, but it is possible. Love is caregiving without expecting anything in return. Cherish the fine memories of past days, but realize that "things are more like today than they ever have been before". Cancel the "Pity parties", unless there are more than 10 people in attendance. This disease is brutal, and I too am disappointed that My ""Golden Years" were sidetracked. On a trip to Disney Village a week ago, I started crying, because I was ""mourning"" being there without my spouse. How I wished that she could have enjoyed it with me, and the grandkids....I kept assuming that I would have much more fun if she were with me (LOL), until my grandaughter said....Hey Jeep, you are here with me. I suddenly realized that I was missing the moments and new memories by concentrating on the old, and the unattainable. My advice is to embrace caregiving, and make it enjoyable...build memories by doing the best job you can, by being the light that guides your spouse, by filling in for his inadequacies , and by doing it out of love. My favorite quote In three words I can sum up everything I've learned about life: it goes on. Robert Frost
Joan and everyone... This is a blog that really hits home for me. I have struggled with this for a few years now. I almost have no memory of what "was". My adult life with him almost seems like a dream or hallucination. I can't reconcile anymore the man of before to now. I ask myself and try to remember if he was ever "normal". It feels like this situation has been forever and just keeps getting uglier.
I have tried some therapy, as the process of grieving the loss of your spouse while they are sitting in front of you is confusing at best. Add to that the guilt and shame of wishing them dead. Add to that the shock and guilt and shame of realizing you are wishing that the most beloved treasured person in your life dead. Therapy, please. More, please. Then realizing I wish I was dead. Intense therapy please. Enter lots of anti-depressants and a great site like this to make me realize I AM NOT ALONE IN THIS!!!!
I have been with my DH since I was 22. I am soon to be 54. I cannot imagine some of the folks here being married 50 plus years and to have this happen. What a hell on earth.
I get by. I try not to remember the past. It is a day at a time situation. If my DH new his condition, I can't imagine how horrified he would be.
I don't think we wish them dead to have them gone, but to end their pain. We know it can never get better.
The hardest part now for us is that we are early in our trip down this road. My DH still looks and most times acts normal to an outsider. But I know he is not. I often find myself getting mad when he does not talk to me, help me around the house and such. Then I remember he can't help it. And then the loss of him hits me again. This is a strange way to live a life. Our LOs have one foot in this world and the other foot in the AD world. Some days the line moves and DH is more here than there.
I try real hard not to think of a future with DH, I think how I will carry on. It is just to sad some days.
I am often reminded by my kids "It is not her, but Alzheimer's". And so, I turn my hatred and frustrations, and broken dreams towards the disease, but I continue to love her for the person she was.
Phanque, your first post (and second) above, were just great and just what I needed to hear. Thank you for your beautiful insight into this terrible disease. Happy holidays to us all!
I agree with Vickie - your posts are excellent. Interesting that you mentioned thinking about how our spouses' must feel. Just last night, Sid cried as he told me that he knew he was getting worse. He said his memory is getting worse and worse. I gently asked him - "Didn't you notice before how bad your memory was?" He said no, he did not, but now he did, and it was really depressing him. I felt my heart, which I didn't think could break anymore, crack into little pieces. When I feel sorry for myself, and get involved in the mourning, I am going to try to remember how it is for him. What a horror this disease is for everyone.
Joan, DH also tells me quite often that he is getting worse, and he knows it. Then he says he doesn't think he will be around very much longer. This breaks my heart when he says this. But, he doesn't seem really depressed about "dying" - he just wants to know that I will be okay. How strange this disease is, and a horror as Joan says.
Several of us who have finally come to the end of t he journey with our spouses know exactly what you are going through. I endured ten long years and it left me with poor health, and not the person I used to be. I sometimes marvel that I could have been healthy, happy, and naively living a fairy tale life. :You are right that you disintergrate more and more each day i have no miracle words to change your situatioin but I can tell you that "this too shall pass" and you will once again have your memories of your man as he was when you two were so in love and living a happy productive life. Your life after this will not be the same ever again but if you are wise, you will perceive that your soul has matured and the meaning of liffe will be revealed. My heart aches for you and I do wish that you do not have to suffer such a long time . I respect and honor our marvelous self-sacrificing spouses who abide by their promise to care for their partners no matter what they must endure.
My first husband died suddenly of a heart attack when I was 37 and he was 45. I thought that was the worst pain I could ever feel. I was wrong. NOTHING is worse than watching Charlie die one piece at a time. It has only been 3 years and I know that we are nearing the end of our journey. I can't imagine going through this pain for 15 or 20 years. As was stated earlier, with my first husband death there was quick closure and the healing began soon (partly, I am sure, due to my age at the time). Now the pain just goes on and on and I imagine that it will continue after he is gone.
sHELTIFAN, I too cannot remember dh the way he used to be. I have stopped trying. I am trying to treasure our last months at home because I know he will have to be placed in 2011. Now everytime we do something (our outings are getting scarcer) I wonder whether it will be the last time. I hug him and run my hands through his hair and make him sit close beside me and he enjoys all that, doesn't reciprocate much.
I got on the phone and email and made contact with friends. It took an effort but now we have several visits planned in the coming weeks.
Phranque, there is wisdom and comfort in that quote from Frost, and in your posts.
This is the second time I've mourned a living spouse. The first was stricken with acute leukemia when he was 35. We had three small children that sustained me when he died after two years. He used to say he was living with the disease not dying from it. I find myself once again watching a spouse who is either "living with" or "dying from" yet another inescapable disease. I know for sure that life goes on. It did once and it will again but I'm really tired this time.
My Dh also is aware, sometimes, of what's happening. he constantly tells me he's so stupid, he tells me he doesn't get it (whatever it is), but for the first time recently, he told me he wants to die. In another contest he said he loves life too much, but truly, in some part of thier mind, they know what they have become, and they don't want to be that person, anymore than we want them to be. My Dh is now almost totally incontinent, both ways. Do you think, in his wildest dreams he would want me to be cleaning him, etc..... No. and honestly, if it were me, and I was cogniscent, I'd probably rather be dead too. Phranque is right when he tells us to picture how they must feel. How awful to know what you are putting the love of your life thru in taking care of you. Puts a different spin on it.
I remember when my husband was able to talk he constantly was apologizing for everything...it was sad. I hated when he would have a lucid moment and realize what was going on.
That is one of my husband's standard phrases. Whenever I say something to him, whether it's showing him something or asking him something, he always answers with "okay, I'm sorry". I don't know anymore if it means anything or not.
Thank you all for opening your hearts and sharing. I find an understanding and empathy here that I cannot find anywhere else. Over the holidays, my son - visiting from out of town- told me that I complain "incessantly." Two dear friends seem to understand;nevertheless, I try not to over share. Others have said, "we all have our issues."
Brooke--I was also told by a neighbor that "everyone has their stuff going on". It was during a discussion where I was asking her for a favor, and she didn't want to do it. A few days later I found out she must have had a change of heart, because without telling me, she did what I had asked (was only to make a phone call to another neighbor). I guess that she realized that my "stuff" is a little more serious than her "stuff".
Sad to say, most folks believe whatever is on THEIR plate is SERIOUS TO THEM. Unless and until they walk in our shoes they will never "get it" and I find not much point in expecting them to understand or offer assistance. That's why this site is so special to me --we are all in some variation of the same boat. I have found solace in being happy for those NOT in my situation and trying not to be jealous of their "normal" lives. I like the phrase my niece uses to tag her emails. "Always be kinder than necessary..."
Brooke - How "wonderful" to hear that you "complain incessantly." Just what you needed, right? How hurtful! And, don't we sometimes have the right and the need to complain some? Doesn't everyone, even those who don't have to go through what we go through, complain occasionally? We don't mean to "complain, we're trying to tell them what we're going through, thinking maybe they'll understand and give us a little empathy.
Brooke--I forgot about this one. A while back, a friend told me I talked about my husband's situation too much. Now she is taking care of her FIL and MIL, who both have dementia. Irony, huh?
We very rarely go out with another couple- the opportunities to do so have disappeared. Three weeks ago, we were leaving a restaurant with"friends" and I guess that I was so excited to be out with others that I ignored DH as he wrestled to put on his coat. My friend suggested that I should really be nicer to my husband for someday I may be his age and need help. I thought that I would explode, but said nothing. Why sound defensive? How could I begin to explain that I think for him, protect him 24/7 and that this was a rare evening of conversation and companionship?
Brooke, Maybe you should have started crying to show how hurt his comment made you. Or maybe you could have said,"Oh I was hoping that maybe you would have helped him!" (all the while thinking "I do it 24/7"!) However I would have probably kept quiet also. I have to say that all of our friends know our situation & I doubt that they would be so thoughtless (although you never know!)
Brooke, I would have started crying, not to show him how much he hurt me, as Elaine said, but because I cry whenever I'm angry, and I would have been very angry. Good for you for not responding.
Thank you for the support. I now turn to this web site every day. It's a source of strength and encouragement that I don't find anywhere else. I read your stories and feel your pain, but I'm always encouraged by the resilience and strength in these pages.
They don't know. In that one instant they may have been right where for one moment you dared to think of yourself and they were so out of touch they commented.
What they show by that is that they don't know what you do for him and maybe they don't want to know.
We understand though. And no harm was done. I would like to say shame on them; but, it's ignorance in the true sense of that word. If we asked them they would see themselves as being helpful. And right there is the chasm between us and the normal world for all to see.
I hope that you have some experiences like I have. Where I will be leading my little space cadet through the supermarket and some people look at me smiling knowingly or even step aside and help that little bit. They know.
You're right in what you said that they don't understand you protect him 24/7 and I hope that we can all let these things go. I do sometimes and other times I'm like a little red fire truck all sirens and firehoses.
Joan, I like you have already lost a spouse after we were married 3 years, I was 22 at the time, I thought it was the worst I would ever have to go thru, how wrong I was. I have been married to DH 40 yrs this month, and he is in stage 5, and going down fast. I pray for strength.