It's been a very hectic couple of weeks, but I have finally posted a new blog. Everyone is always telling me how strong I am - I have a different take on our strength (yours and mine). I invite you to log onto the home page - www.thealzheimerspouse.com, read the blog, and post comments here.
Very good post Joan. Funny I always get that too, oh you will be fine Patty, you are so strong. This , usually, from ones that do not put a hand out to help. And they do not want to hear me say, I am not as strong as you make me out to be.
And yes, we do it, out of love, because we HAVE to, because in some ways, the only other answer is abandonment. So many outsiders always say too, well you will just have to put him in a "home", like it is cut and dried. And of course , the longer I go on this journey, I see that that will only happen when it is intolerable and dangerous.
If I survive this journey and come out the other end whole and sane., if I do not do something to HELP someone else in a tough situation, reach out in any way I can, then I think I will not have lived my life the way that is right. How I have learned, that the turning the other way of so called friends and family , is almost more hurtful than the actual caregiving.
That love of our fellow human, and the earth and our critters, is the most important thing there is , that is the real truth and I am sticking to it. I am finding slowly, that there are good ones in the world, sadly not many, but one loving one makes up for 5 rotten apples.
And so Joan, I know you know, how much we need this place, it would be so much harder for me if I did not have you all.
Joan, thank you for sharing your award with us. We all do this out of love, or (I'm sure in some cases obligation) because as Coco said, otherwise it would be abandonment. But you have provided us a place to speak to others who understand & I think you deserve a reward for that! Coco, here is a quote about love “And now these three remain: faith, hope, & love. But the greatest of these is love”. If I survive this journey I will definitely pay forward all the kindness I have received from the friends who haven't abandoned me & have helped me.
Joan- Congratulations!...But I must disagree with you...You do have a CHOICE. You can either leave and be rid of SId, or you can continue to love him. Love is the gift of oneself to another. SO if you made that gift, your life does not belong to you. It belongs to Sid, and your choice is to continue to love him, regardless of the cost to you. You have a unique opportunity to prove your love, and I hope you can embrace the role of caregiver with enthusiasm. Unfortunately, there will be a day when your love in action will end, and you will be left only with memories and the satisfaction that you gave the perfect gift..the gift of love. Of course, it is easy to love someone who loves you back, but the ultimate challenge is to love someone who cannot love you back....You are making memories for the future, so make them as great as you possibly can. It is ok to fail once in a while, but keep your eyes on your ultimate goal....... You are stronger than you see yourself, and I am sure each of us on here can tell you how strong we see you.....Hugs
I do not agree that in order to "prove" our love, we have to take care of our loved ones ourselves, as long as they live, regardless of the cost to ourselves. For over four decades, I have honored my vows to my husband, and loved him through good times and bad. When he was first diagnosed, when he was still himself, he told me over and over that he wanted me to put him in a nursing home "sooner, rather than later". He did not want to see this disease destroy me, too.
Sometimes caregivers reach the absolute limit of their resources—physical, emotional, financial—every kind of resource. They have given absolutely everything they have to give, to care for their spouses. Sometimes it literally comes down to whether a caregiver will live or die. To suggest that someone makes a choice to longer love their spouse if they can no longer care for them, I believe, is to dishonor every loving spouse who has had to make that infinitely painful, heart-wrenching decision.
I believe that I best honor my marriage by doing what my husband would want me to do—to survive this terrible disease and find at least a small amount of joy for myself.
JAN...I agree with you. At least in my case, love will have little to do with if and when I have to place my dh....it will be basically my physical well being. Physically, I could not handle getting my dh in and out of a shower, in and out of a bed, into a wheelchair, etc. I am too old and too small. Many of us have little or no family to turn to for help even in the smallest way and have to do everything for our loved one for years. It takes it's toll on us mentally as well as physically. I am not there yet, but I know that day will come.
For those that have not reached approaching their 80s and the late 70s....you know there is a big difference in your physical strength then when you were in your 60s. Also, mentally it gets more difficult to handle all the business affairs that need to be done. Nikki, I beleive said it best when she talks about giving her dh the best care possible and therefore had to place him..because she couldn't continue doing it on a physically level.
I do beleive that Phranque meant that it is love that gives you the strength to do as much as you can and for as long as you can. Nor is it is the lack of love that makes it necessary to place your spouse.
Judith- You are exactly right...Perhaps I phrased it wrong...But love is what gives you the strength to do it. Placing your spouse does not mean you do not love your spouse, but that you are actually doing what is better for them. In many ways, placing a spouse is much harder than keeping them at home. My intent was that love is what makes us great caregivers, no matter what the circumstances are...Sorry if I offended anyone.
Phranque* I read your post the way you intended. Unless I am missing something I don't see where you even mention placement. You are right my friend, it is love that lends me strength.
While it is very true that love is behind the care of an ill spouse, but one must also remember that love is something that our LORD freely gives us so that we in turn can pass it on to others. We as caregivers gave it all to our spouse when they were here whether it was at home caring or at a facility. We never stopped caring for the person. We always new exactly how they were doing either directly or indirectly. Nobody promised us an easy life and the choices we make are never easy. Our choices about the care of an ill spouse will haunt us for the rest of our lives (if we let it) that is the key. GOD forgives our sins if we ask and repent, the problem starts when we second guess our decisions after the fact and when we can longer change the way it turned out. Therein lies the problem Monday morning the quarterback never works because we always say I could a would a should a done it differently. The thing to remember is the outcome does not change only they way we feel about ourselves. I say to you go forward with your head held high knowing you done everything humanly possible for your spouse while they were still here. Take pride that you SURVIVED the hardest test of life and that is losing your everything in life that made you what you are. The only thing greater that you could have done would be to lay down your life for another human. So take heart and be proud of yourself even when the going gets rougher and it will take everything you have to keep your sanity and strength so survive this test of strength, faith, wisdom, and patience. There will be days when you just want to lay down and die but you will get back up when they call and do what you know you must do regardless of what or where you are. Even after they have passed you will have times when you think you should have went with them, but if GOD wants you HE will come for you so put that crap out of your mind because there are others here on this side who still love and need you. Never forget YOU are NOT ALONE here there is always someone who needs you and you HAVE to be there for THEM.
The more frequently I log in, the more I become aware of the saying Men are from Mars women from Venus. or perhaps it's just me ? I feel like i come from a different place and face far fewer issues than most of the posters, who are by the nature of the site, female. Our kids are fantastically supportive and caring. Friends have not abandoned us, our PCP returns our calls, the aide performs the tasks she's asked to perform, etc. I’ve loved my wife since we met at 14 & 16 years old. She was DXed in 07 and is late moderate at present. I'm not a newbie to the caregiver role. I've never perceived my role as an obligation, it's my choice! But not a conscious one, it was the natural flow of our life. I know DW would feel exactly the same should our roles have been reversed. The concept of resentment has never entered my mind. I agree with Phranque, as the person i knew as DW faded away and the return of love and affection ceased to exist you are put to the test, Initially I did everything possible to suffer from caregiver burn out the exercise mind yoga stuff etc. Friends, who redefine the word, make respite a non-issue for me, They continually volunteer to stay with DW afternoons or evenings several times a a week if i choose to accept all the offers I could be out every day. . I unintentionally developed a close relationship about a year ago, this fills many of the voids that Dw is no longer there for. This companionship has been a wonderful survival aide that in no way denigrates my love for my wife. I have shared info this with my children and they approve. Throughout my professional career I was a problem solver, I have always refused to get bogged down by minutia, and waste precious energy on trivia. I focus on the positive ( like being able to get DW to the beach for 2 hours the past few days), I don't bitch about a problem, I either resolve it or do what caregivers must I ADAPT (Joang) If DW has to be placed in the future, it will be because she HAS to be placed for her benefit, no guilt, I'll ADAPT Joan Congrats on the award!!!!
Marty-- A) You are obviously amazingly well connected to a support network, and B) Not all men are like you. But thank goodness for you that you are.
I will add something else about the question of resentment-- IF a spousal caregiver has a support system that helps prevent burnout, it is WAY easier to maintain a loving feeling and not be caught by the sad pit of resentment. Since I have had to give up the 24/7 role, due to behavior and aggression from my husband, even for all the entailing struggles, it has been MUCH easier for my sense of compassion to be predominant, now that I'm not "unspelled" so to speak.
I do not believe that ease of caregiving, or an ability to stay emotionally afloat, is related to our gender. It IS related to our support network though. A difference that may tend to fall along gender lines though, is a male tendency to--as you say--problem solve, then feel satisfied by the solution, as opposed to suffering residual guilt. Not all women will get caught in the guilt trap, and not all men WON'T, but there may be something to trends in this area.
I have always thought of myself as a tough, sensible, tender person, that was well liked.
Truly this is not about gender. I have always been a tough tom boy type and hung out with guys.
Like you marty, tried not to whine too much and roll with life's challenges.
Yet, when my husband got diagnosed, his native family, that I thought would step up to the plate and help, accused him of being "possessed" because we had attended some Hawaiian sovereignty stuff. Despite me having taken care of their AZ Mom for a year, every weekend, two sleepless nights as they did not medicate her, despite that , they have basically abandoned us.
How lucky you are. You know, I was so surprised that people dropped out of my life, (not just the sisters) Even my best friend offers no support.
So what do you do with that? Buck up, stuff the hurt, pass the blame?
Sorry if I get a little defensive at your post, I am sure it was not meant to do that. Perhaps for me, I am sure, that IF SOMEONE HAD REACHED OUT A HAND, I would not have to heave with sobs of over tired and feeling so unloved and abandoned. Of feeling that life as I knew it, is over.
I do feel like I have been picked out or picked on with this life now. I accept it. I DO NOT accept that the love I thought I had in friends and family, is mostly gone.
What friends you have! And oh, how I thought I did too.
There is a lovely man here....who posts often about the utter lack of support he has. There are more than him.
There you go...Coco just expressed, in a personal way, what I was trying to say in general terms. It is WONDERFUL to have a wonderful support network, and it will make your whole caregiving outlook so much better. So you need to realize that when the more negative emotions seem to be rising to the surface in what other posters say, it's not a gender thing, it's not even necessarily entirely a personality thing...it's just proof that what we ALL truly need in this gig is support, and that we start to drown without it. Because we're human.
(and forgive me if I'm coming across stridently...I'm dealing with so much sh** this week that I feel like I could incinerate someone with my eyeballs.)
Marty, I say this kindly, but I am thinking you must be from Mars if you didn't know your post would ruffle some feathers and possibly hurt some feelings.
Not mine as I do believe there are differences in male and females, and this extends into the caregiver role. But I would hardly call the devastation of losing the love of ones life to Alzheimer’s as “minutia or trivia”
Perhaps you personally aren't feeling this devastation because you have a new “close relationship” in your life? You aren’t crippled by the loneliness, you have in some ways “moved on.” I am NOT saying this has any effect on how deeply you love your wife, but it must play a significant part in your abilities to cope and ADAPT. You aren't missing what we are all missing and longing for with our spouses, because as you said, this new person fills that role.
I am glad that works for you and that you have found happiness. I personally could not do that. Lynn is the love of my life still, and it does hurt immensely to watch his demise. Please don't belittle that loss and the true raw emotions involved with blanket statements about genders.
There are men here who suffer and hurt and who are just as torn apart as the women. I believe Emily is dead on and this is the direct effect of what kind of support system one has. You have been very blessed!!! But that is not true for the majority of the people here.
Perhaps it would be kinder if you could extend your hand to help those who have not been as blessed as you.
I think of all of you who have violence in your situations, and have no help, and are lovely people and maybe even not so lovely, that need to reach out. That have to call the cops and lock the door so your mate cannot get in to hurt you. That have families that blame YOU for the illness, or just don't give a crap.
This is one place of refuge to me that I will not drop out of, because I have possibly gotten offended, and very much so. I love all the women, and men here, in fact I like guys more now that I have seen how close we really are, how much we all care.
If we says things that are not helpful to our situations, and are falling apart, some of the best advice I got here is, PULL UP YOUR BIG GIRL PANTIES!!
Possibly there are more women here as it has mostly been down through time, that the woman is the caregiver. I don't know, I don't care, I see a pile of guys here, guys I would like to have a beer with or teach them to husk coconuts.
And, having gotten offended, and feeling righteous...I went outside and husked 10 coconuts, smashing the end of the husk with a very sharp object and TEARING off the outer husk. I AM LEARNING!! Finally, I can stand up for myself, and believe there is a cause.
And I can still put out a hand in friendship.
And by getting ticked off today, I have solved the problem of who is going to process the coconut, as he cannot anymore. However I am REALLY going to pay for it in my arms and shoulders later.
I wasn't going to add my 2 cents because everything I was going to say has been said, but I decided to anyway. I prefer the word “vent” over the word “bitch” but call it what you will, I'm glad that we can come here to do it. marty, it sounds like you are very blessed. You have supportive children (I do too, but many here don't). It sounds like you have more respite time then you know what to do with (many here have none). It sounds like you have come to terms with your DW's decline (many here have a difficult time doing that). So I guess what I am saying is that it seems like you have no complaints. Well many of us here do & we feel comfortable coming here to (as you call it) bitch, because we either don't have anyone who understands to complain to or we don't want to bother anyone else. Sometimes there are things that we can't resolve or adapt to. So we come here for support & a kind word & usually someone comes along who has been through the same experience that we've had. Maybe I am responding to you out of envy. You seem to have a greater acceptance to what is happening in your life then I could ever have. You are very fortunate.
Well let me add my 2 cents too! Yes I come here and BITCH and complain and I live with guilt all the time-I am worn out from cleaning poop and pee and and trying to make sure my dh is ok. marty either you are the have the most wonderful friends or you are not dealing with all the living H-- that some of us go through.You sort of made it sound like we were just whimps for our complaining and venting. Sure sounds like your life with an AD spouse is a lot different from what my life with my DH is.
I've been in the "AD Spouse" business for 7 years now, and there are some things I've observed about gender issues and dementia caregiving. All of these are generalities, and of course, there are exceptions.
--Overall, males, especially "young" males, with dementia demonstrate more anger/aggression than females. This is even recognized by residential facilities.
--Most female caregivers are smaller and weaker than their LO's.
--Put those two together, and you are living with a psychological fear that male caregivers usually don't face. When you deal with that fear over a long period of time, it can take a toll on you.
--Most female patients have a different bond with their pre-dx friends than the male patients do. It is common for female friends to stay in touch, perhaps taking the patient out to lunch, to the hairdresser, on a weekly basis. Male patients generally have few, if any, such friendships. Male friendships seem to revolve around work (in which the patient can no longer participate), or sports such as golf, which early on, become too challenging cognitively. The result is that male caregivers may get many more respite opportunities than female caregivers. I know one early stage (female) patient who went to Italy with a group of her female friends. Many of my husband's friends didn't take him out for a cup of coffee!
--After the loss of a spouse (to an illness like dementia, or death), males seem to find new partners much more quickly.
Marty--I was a problem solver (analyst) at work too; if you look at my posts since 2008, you will see that I don't bitch either. (As a matter of fact, I have been complimented by members here that I just "tell it like it is" and by others on creativity in finding solutions.) BUT, I realize that all of us have different circumstances and different abilities to cope with this role. Some need to vent on a daily basis, some don't. What I was trying to point out above is that due to the gender issue, you may not have been presented with all of the challenges that others of us have (and you did acknowledge that perhaps you face far fewer issues than others). I believe this has had a direct effect on how you have adapted. We are not all dealing with identical situations, (those of us who have had spouses requiring geripsych unit stays can certainly attest that all AD patients are not created equal) and as others have said, you should consider yourself fortunate to have the support system you do. One reason I'm surviving is that I have built a support system--when it didn't come from friends and family, I branched out to adult day programs, in-home help, good doctors, the Alzheimer's Association, a geriatric care manager and finally, placing my husband in an ALF. Guilt is a word that isn't in my vocabulary--I know I went above and beyond. (After placement, the friends/family did kick in--but that's another thread). But I recognize that I was able to do this--not because I'm superwoman--but because my husband had enough foresight to buy great LTC insurance. So, I'm thankful to have the ability to get support and I try to help others--through this site and other activities--who are struggling with the role more than I am. If we don't help each other, who will help us????
If I'm not too lucid it's only because we've just returned from an all night stay at the ER. In addition to AD, my wife has bowel cancer, she declined chemo two years ago when DXed preferring not to linger like her mother did for years with AD subsequently passing due to untreated pneumonia in a LTC where we had placed her.
An hour or two after last nights post she awoke with searing pain in her gut. Being unable to get her to walk to the car, it was 911 transport to the ER. Via my cell, (a smart phone is convenient) Emails were sent to her Oncologist and PCP while she was being prepared for transport. ER personnel were presented with print out of medications and md's and medical history from Safe Return which I had recently updated and saved, plus a copy of health directives and my POA. All bases were covered before she went out the door.
Orders had been given prior to our arrival and she received immediate treatment in the ER. (I can assure you it is not a good thing when you've gotten to know many on the ER staff by first name. A scan revealed a blockage/impaction, whatever? The key was that it didn't appear to be a caused by tumor growth. A decision was made to try every means to force an evacuation. Results were achieved early this AM and we arrived back home at 8:30AM. AS trips to the ER go my only complaint was can't hospitals buy furniture that has been designed by someone other that the Maquis d'Sade. I've had 4 back surgeries and suffer on their furniture. a soak in the Spa by our pool helped this am
part two Re Men from Mars comments... Violence ----- Ladies your words are so so true, my 5' 1'' wife presents no physical danger to me whatsoever. Roles reversed my 6' 1" 195lbs I could be an overpowering threat to her. One tip: I find that her agitation level will increase or decrease many times as a function of my reaction to her being agitated. More often than not a loving hug, the holding of her hand and the sounds of music will more often distract her and calm her down. She can be enraged, but if put on some disco she's ready to dance. A tip from a music therapist. This does not work when she's on one of her sun-downing acting like a road runner on Meth. The Ativan and Melatoin work without over sedation. Our Neuro at one time tried a low dose of Seroquel and we concluded that the loss of "self" caused by the drug was producing anxiety and over sedation that in and of it self frightened DW.
Men perceive your comments as bitching you prefer venting... semantics Slang dictionary : Venting verb to relieve by giving expression to something , Bitching complaint: "What keeps me sane are my regular bitch sessions with my friends'' When a comment on a poster on a thread "vents" about an issue and then later reveals that this very correctable issue has existed for 7 months, call it want you want, I wouldn't dream of offering a solution
Marylin MD - re friends: I love to play with computers. I have since I bought the first one for my company in 1981, anytime anything went wrong I watched the repair and learned how to do it myself. I learned to program on my own way back pre Windows in DOS. I eventually sold a recruiting software package I had developed for my own business to Monster Jobs.com for use on their website
Over the past ten years I have voluntarily taken on responsibility for troubleshooting computers for my condo management and in and the three adjoining condos about 300 units total. Word quickly spread that if neighbors have a problem, I'm their go to geek. I never charge for my work, most people here use laptops so they stop by with their computers, they socialize with DW and those with the under desk I will take DW with me, to air her out and socialize her. Over then last ten years we have met many what I'll call "users" and almost an equal number of neighbors whom I'll define as a few friends and a large number of acquiescence's. (Our hard core support network is made up of 8 couples ex NYers whom we've known for 30+ years). The bottom line, is we have an a large network and I am able to keep DW socialized without day care.
A comment on one of Joan's prior blogs – going out to dinner or a show with friends and feeling resentment. I'm lucky,I've been in the exact situations and never felt those emotions. DW&I led a great life – living in Manhattan after our kids were done with college. like singles, out every night, extensive travel round the world etc. My emotional reaction is more like I'm paying my due for having it so good for so long. I adapted
What I'm trying to convey I didn't let DW's AD isolate us. I kept her environment as normal as possible and let her know that when she misbehaves that's not how we treat each out, I would never speak to you like that. Don't ask why, but my words still penetrate more often than not.
Dealing with poop & pee - Bak Depends and baby wipes have worked for me, A baby dry down sheet on the bed (she's now in a single bed) with a stack of sheets and back up dry downs stacked along side make accidents a 5 min change, usually performed while she's standing in the shower playing with the hand shower spaying it all over, the stall is now sealed to the ceiling. I never thought at age 71 I'd again have a diaper pail in the house, but I do and it works until I do the daily load of wash. I adapted
Nikki- Do you really perceive my post as defining the loss of our loved one's as minutia or trivia... If so you missed the point which is THAT IS THE BIG PICTURE DON'T GET BOGGED DOWN BY THE LITTLE STUFF. For ex: After the original DX, How many here agonize over the Neuro trip - a waste of time after the orig DX... He'll run his tests and tell you want you already know. Any good PCP can manage Alz. Once you have the DX other than treating the symptoms with the limited meds available are the best we can hope for. Do you want to agonize for a week before and MD visit and then spend the week after with the depressing results - tell me what this trivia has done for you? Your loved one has AD and now you had two hours in an MDs office to watch his deficits. Great!
part 3 Elaine if you think I've come to terms with DW's decline you must view me as an insensitive lout. Does coming to terms mean comprehension of the facts then accepting them as fact then maybe you're right. Having watched my mother in law decline into the hell of AD, I knew early on that there is nothing that will return the love of my life to me... Now what do I do with that info???? I make her every waking moment comfortable as possible, I devoted my every waking moment to her until to my surprise I unknowingly, totally unplanned, evolved into a friendship with a person who was experiencing the same loneliness. In 52 yrs of marriage this was the first violation of what DW and I had heretofore deemed out of bounds Neither of us planned this, could have ever perceived ourselves in such a relationship, but this is the real world and life does go on and sometimes we can't control the pace. So yes I have accepted what has destroyed my wife and realize I can't do anything more for her than I am and will do to make her existances as pleasant as possible... and permit myself to live within my culturally defined limits. I unwittingly adapted.
After a long night, I'm out of gas I'm sure the ladies of the room will find more to tear me apart on in response... I'l
marty. thank your for the details it is good to know. I am truly sorry your wife has to suffer so.
No one wants to tear anyone apart here I am sure. Speaking for myself, I just want to say what I want to say, without being told that I am perhaps acting "wrong", that another persons way is the "right" way. though, often it is really really helpful to learn the tips offered here.
What I got out of your first post, is that you are different than most of us here, that we are somehow not thinking or acting right, and your statement of men and women and the stupid planet analogy of course comes across as a bit well, mean.
For me personally, being told that you have so many offers of help that you would be free all the time if you wanted, how awesome. Did you mean it as a brag, likely not, but can you not even see , that when we post about having NO help at all, we are REALLY hurting, that is very big, very tiring, and sometimes makes us feel very unloved?
That is also why I brought up the "PUT ON YOUR BIG GIRL PANTIES", for the times, ( rarely, usually me), where someone is sinking in to a whining state that is not helping anything. This is great, and fun way of tough love.
As for your wife responding to your suggestions, lucky you. My mate does not understand most everything I say, hugs do work the best. But others here have it way way harder I am sure you have seen that.
I also try to work full time, (at home luckily), and take care of him with no help, having to put down my work many times to run and check on him. SO when he floods the toilet when I am stirring the pot and multi tasking, I tend to get, ONCE IN AWHILE, very frustrated and depressed.
The silver linings are there, and for people like me that have always been positive, I grasp for them. But if not for this forum, I would be so much lonelier if that is possible.
You are in a rough situation, and you are a different person. I WILL NOT DOWNPLAY YOUR PAIN< please do the same for us. We are after all mainly here to comfort and help each other.
Marilyn, how very true about going the course on OUTSIDE help! Yes this is the only way I am getting a break, and perseverance is paying off.
Okay, Marty, no tearing you apart from me today. Seems like you are looking at life as it is and doing a good job of taking care of your wife. We all have different problems and different ways of handling them and who can say that their way is better than someone elses. We really pride ourselves here on not judging others but sometimes a nerve is touched and we go into attack mode. Keep posting and reading.
Marty--sorry to hear about the night your wife had, but glad the situation was resolved.
I think at some point you said you live in Florida? We have many friends there and I believe that accounts for much of your social support. I have learned from visits to my friends that it's a "retirement playground" and people socialize on a constant basis. Many "expats" from other states connect there, as you have with your fellow NY couples. Those of us who live in other areas of the country, especially if one lives in a more remote area, simply don't have the contact with others that's the norm in your part of the country. So I think that's a factor when members post about needing help, mentally or physically; they are isolated simply as a result of geography. In addition, those of us who are struggling with a younger-onset dementia spouse usually find that friends and family still work full-time and cannot help us, even if they want to.
I disagree with your statement that any good PCP can treat an AD patient successfully. My husband is on six brain medications and it took two geripsych stays, under the treatment of a neuropsychiatrist, to get the combination that worked. I doubt that a PCP, no matter how good they are, can do the same.
I too am sorry to hear about your DW’s tough night. ER visits are never a pleasant event., and yes the bedside chair leaves A LOT to be desired. I am glad to hear her problem was resolved and hope she is feeling better today.
I am truly sorry if you felt I was tearing you apart. That was not my intent at all. I was simply trying to point out that blanket gender statements and perhaps suggesting people here bitch too much might not be the kindest thing we can do to help each other out.
If you read my posts you will see I do not often vent, I don’t bitch, nor whine. However, if this site had been available when we were in the earlier stages I dare say I would have filled many pages with my confusion, hurt and overwhelming thoughts.
We are late stage now, there is no denial, just the stark brutal truth. I accepted, adapted and adjusted long long ago. But I do feel empathy for my fellow forum family here who are still in the throws of learning how to come to terms with the diagnoses and what that truly means.
It is a process to acceptance. It is perfectly normal to rally against the life altering changes we find ourselves thrown into. The earlier stages are often the hardest for many because it is all so new and the changes we see in our spouses are shocking, devastating. We are lost in a world we can’t possibly understand. We learn as we go.
Many here are still in the learning process and need the veteran’s kind guidance to help lead them to how they can find more inner peace and acceptance to better cope with the fate that awaits them. I was trying to emphasize that I don’t think it is helpful to point out some here bitch or whine. Instead it might be more helpful to share with them ways we ourselves coped with these situations when we were “new” to our caregiving roles as well.
I DO see the big picture and DO agree it is wise to not sweat the small stuff. But I have also learned that no one can accurately judge what another is going trough, nor can we decide what is “small”. To them it might be monumental, and really, who are we to judge? I also know that many “small” things can snowball until it feels like you can feel the full weight of the avalanche balancing precariously on your weary shoulders.
my email is somewhere in the contact thread, you can write me anytime! HA! And of course, being in the "nut" business, well, you can imagine all the years of fun I have with that.
A bit off subject but here is an example. (it is relevant to who I am as a caregiver...?)
I put an ad in the paper one time as I could not get enough ripe coconuts, (not the young green ones) I believe I worded it like, "Looking for ripe brown coconuts with the water still inside, and fresh"
I got the strangest call from a guy, he stuttered and kept inquiring just what did I really mean, with an underlying suggestive tone. When he realized that I really wanted COCONUTS< he hung up.
blue dazed I made you aware via email of name change due to email issues relating to an hacking issue. if I failed to include you apologies, I made no attempt to mask the two id's I thoughtp it was apparent to all
marylin. re.PCP. the operative phrase.... "it took two stays....". Until the events that required commitment did you require the services of the neuro. Was anything done by your neuro until the commitment? I refer to quarterly monitoring MME's etc. When events require it, you call them in no question about it. That's just common sense
"COCOWhat I got out of your first post, is that you are different than most of us here, that we are somehow not thinking or acting right, and your statement of men and women and the stupid planet analogy of course comes across as a bit well, mean.
I do not understand HOW you concluded that I am referring to anyone here as some how not acting right or inferred that anyone's actions were stupid . I used examples of real problems others have posted on different threads that I have not experienced! It's all been said here and If you or anyone else take these two paragraphs below as an insult... then I guess men are from Mars. I certainly didn't intend to be mean or hurtful Please accept my apologies
MARTY The more frequently I log in, the more I become aware of the saying Men are from Mars women from Venus. or perhaps it's just me ? I feel like i come from a different place and face far fewer issues than most of the posters, who are by the nature of the site, female. Our kids are fantastically supportive and caring. Friends have not abandoned us, our PCP returns our calls, the aide performs the tasks she's asked to perform, etc. I’ve loved my wife since we met at 14 & 16 years old. She was DXed in 07 and is late moderate at present. I'm not a newbie to the caregiver role.
me too sorry. Yuck I hate fighting. But, I still need to thank you for getting me riled up, ( or me allowing myself to get riled, to be politically correct)
in my frustration I finally learned how to husk coconuts, and hence though not as many as I like, can still stay in business. My husband got a good laugh, giggling as he watched me in my fighting the path of the least resistance, whacking them in the most difficult way. I will get it right though!
Coco watched the guys trim off coconuts in anticipation of hurricane season. I can't believe you can husk them. What a "bitch" (no pun) of a job. I asked for two and the machete flew- a few well placed stokes and rips of the husk and they were huskrdbb, This guy had arms like the hulk. That's one tough job Opps off topic
I did not jump in and post on this thread. One thing I have been busy with my dh, but I also wanted to wait and read the comments where there were a number of comments to read. I am glad I did wait. The one thing I find from the comments is that having friends, support groups, some kind of outside job that allows contact with people, etc. seems to make this caregiving job easier. We all need contact with the outside world if we can find it and have the time.
Several months ago a friend was here and she saw my computer. She said to me "what do you do on that computer"? She really had no idea what an older person could want to do on a computer. I didn't hesitate one second to answer her and my answer was..."most of the time this is my only contact with the outside world".....For those that are mostly confined to their homes as caregiver and have little time or strength to do hobbies, etc. will understand what I mean. I think the burden of little to no contact with the outside world is taking its toll on me as much as my duties as caregiver.
For years I did many different creative things, like sewing, quilting, crocheting and sold them on the net as well as doing 3 or 4 craft fairs a year. I did the craft shows not for the money, but just as an outlet and I enjoyed the interaction with other sellers and customers. I had to get rid of the things I created to justify making more. Now, I have neither have the time or the strength to do most of these things I did and if I did, I could not have a booth at a craft show. What would I do with my dh?? Also, I played a lot of golf. Can't do that now either.
To me it is like my life is now over as well as my dh's life. I can't see the end of the tunnel I am trapped in.
We are examples of how this disease not only affects the victim but caregivers as well. We are, feel and just don't have a way out of this entrapment. One day I accept it and another day I want to scream. Some days go well and other days have more than 24 hours.
When dh looks at me and says he is crazy, I just put my arms around him, kiss him and say he is crazy about me. That gives me strength to go on, especially when he smiles at me.
Judith KB, I am younger than you, and have only been on this journey for less than 2 years, and have felt like that! I wish I could make you laugh and do crafts with you, how great to hear you are also a crafter, and love to do markets. As hard as it is for me to participate each week, (mainly because I have to drive so far, and..watch him), I still love to go and yes enjoy the interaction. It is my big social event of the week.
I don't know where that tunnel will lead, though I would like to hope there is some light. Keep healthy I want to come visit you when the time is right, and we can take a fun journey. I truly believe if any of us lived closer to each other , we could make our lives better. It is like you say too Shirley, one day we accept and for me even smile and do the happy dance, and the next, sob and scream while washing dishes.
On another note, and TRYING to keep on the subject. (so I say, the physical work of husking coconuts affects my caregiving..lol) Marty...I have big strong arms, mainly from CARRYING huge sacks of coconuts through the bushes this past 20+ years. And those guys that were trimming the trees down your way, well, likely they were young green coconuts. The ones I husked are the OLDER TOUGH ONES< really hard to do for a rookie, my hands are just now not so sore. And I have product to take to market.
I need to slow down...husk and go with the path of least resistance, like Dado used to do. You would have loved seeing him laugh at me trying to do his job.
JudithKB--have you pursued all avenues for getting help? I remember the trapped feeling I had years ago, before I reached out and found a way to get some respite. Feeling that your life is over isn't a good thing (as you know) for you or for your DH.