Religious people say God only gives you what you can handle, but this is so much bullsh-t. Bad things happen to good people and to bad people randomly, and trying to make sense of it is a fruitless endeavor.
I'm trying to figure out how to be more positive, because I truly hate what I'm becoming. I just can't find much to be positive about. I have much to be thankful for, and most people in my situation do not have the family and support system we have. Very few have the kids, grandkids, friends and family that we have, or the ability to, at least for the time being, afford to pay for the "companions" we've hired. But ultimately, I'm in mourning for myself. I read about Jews about to be gassed, and saying Kaddish for themselves, and in a way I'm doing the same.
Am I being selfish for making this about me and not about Ann. Perhaps, but I've been adapting to Ann's situation over the last 10 years, so I'm not shocked by where she is heading. I'm shocked by how quickly things have deteriorated over the last 2 years. I just couldn't imagine, however, how horrible it would be for me. She cannot grasp her reality, which is a blessing. I, unfortunately, have some idea of what the future holds, and it is terrifying. I have not heard from one person who offers even an inkling of hope.
With certain conditions, there is room for hope and prayer. We pray for the renewal of body and of spirit. Are these realistic objectives for us.
The therapist says that acceptance is the key to finding some peace of mind and some happiness. She says that I expect too much and that I'm fighting what I can't change. Maybe she's right, but when you see a tsunami heading your way, I can't help but think that up to the last second, you hope for an escape. I'm not naive, but the glimmer of hope, however hopeless still lingers.
The Alztheimers Association says to find things that make you happy and to make time for those things. What made me happy, more than golf and tennis, was having Thanksgiving at our house, watching Breaking Bad with Ann, babysitting, making plans with other couples, and going on nice vacations to places we've never been. All gone.
I am plagued by how I will be remembered. I imagine as an a pitiful character. The guy with a sense of humor who enjoyed everything is gone, and I doubt he will be back. I am sometimes amazed at the obstacles I had to overcome to have a successful career, and to be able to retire with a few bucks in the bank. But, as Fantene in Les Mis" sung "there are storms we cannot weather". Having an Alzheimer's spouse is such an impossible obstacle.
Finally, while I wish I could somehow escape, I'm not contemplating anything drastic. But, other than the fact that the kids would have to take care of There mom if i was gone, and I would not put that burden on them, I would welcome an easy exit.
I wrote this with no idea who I was going to send it to, or if I should send it to anyone.
joisey guy, so sorry to hear of your sadness, but yes trying to form a life of one when we have been a couple all this time is so very difficult. it also makes us bitter and angry that we have to pull out the stops and try to form a new life for ourselves- after thinking the golden years await. and all that Is now void and unattainable. I can understand the not wanting to move forward and no desire to do the things we love anymore. without that other half of us we shared so many years. I do think the attestments of so many here in the after is affirmation that yes it will get better after the grieving grows less. it will never go away but will be manageable. its important to allow that grieving to process. we all go about it in our own ways. I hope you find some solace knowing you are not alone in your thoughts, many of us feel as you do. we just have to find the strength to cope and carry on. and hope eventually we will find our reasons to move forward. keep posting it does help. you will find others who feel as you do. divvi
"I'm trying to figure out how to be more positive, because I truly hate what I'm becoming." Don, this happened to me, and I truly understand the turmoil it causes. My husband died two years ago, and I see now that the whole Alzheimer's experience that I went through was necessary to burn away the dross. Somewhere I read, a long time ago, this statement: "I will not be daunted by an interlude." This is an interlude. You will return to life. Dross gone. Gold revealed.
My wife is almost 65 and prob will be home with me for quite a while. Terrible to say, but i wish she was ready for a nursing home so i could have some freedom. Limbo is a lousy place to live. Not single, but not feeling married. She just reluctantly stopped driving in May, and her major problems are almost total short term memory loss and an inability to understand or retain any information or directions. Shes also wobbly on her feet. Last week, she fell and broke her wrist and shoulder which has turned me into a veritable slave. Cant leave her alone for a minute. She'll probably fall again. This morning, I watched her sleep from 8-10am, because I could not go out and leave her alone. I'd give anything to meet a woman to spend some "quality" time with. I'm considering making a overture to one of the "companions" I've hired, but the last thing I need is a sexual harassment scandal. Probably more info than anyone needed to know, but we feel what we feel, and I feel the need for a passionate relationship.
I feel your despair today. I ,too, have so much to be thankful for ...family, friends.. yet feel so alone.
I could write more but am busy this morning getting ready for a birthday party for my DH. He's 66 and such a decline since last birthday. House is full of food, party goods, extra chairs etc. All signaling that TODAY is his party.
DH comes downstairs this morning in the midst of all the preparations and asks"What are we doing today?" Same question he asks each morning. When I remind him today is the party, he isn't excited . He groans and says he is tired. So I sent him back to bed to sleep some more before the company comes.
And so... I just want to go sit in the corner of my couch and not move.... I guess mourn the husband I no longer see here. The one who would be running around the house with enthusiasm helping me get ready. The one I could talk about things with.
And yes...I fear the tsunami and somedays wonder how I will not drown!
Lorrie, it Sounds as if we're sharing the same boat. I will be 66 soon, and my therapist says I'm 65 going on 40 and my wife is 65 going on 85. We've had lots of family functions as you're having today, and while its great to have all the people around, there's always the 800 lb. gorilla in the room that keeps you from really enjoying the occasion the way you used to. You try to live in the moment and straddle the line between what everyone else perceives as normal and what your normal is. Its tough. Am I making sense here? Try to enjoy the day and I hope to hear from you again.
I bet if we took a poll that 95% of the spouses are/were feeling the way you are in this limbo stage....4,5 & 6. I say were for the members whose spouses are now in LTC or have passed on.
One of my worries is what if I get him through this and then I am stricken with some illness or my time on the clock is up. That I haven't had the time to go on and get to really live and enjoy what life time I have left. Plus I would just like to lighten up and find my smile again.
When I say I can totally understand how you are feeling.....I totally can understand it. Plus if my hubby had fallen and broken his wrist and shoulder he would of been put into care. I wouldn't of been expected to take him home and care for him or I would of refused to take him home....too big for me to move.
Thanks for your thoughts. Yes, I will try to enjoy the day. But it is so bittersweet. I have the feeling this will be the last big party he may have. I sense it is overwhelming to him and I don't feel like pretending all is fine and normal..
But', of course, somehow I will summon up the strength not to let the 800 pound gorilla in the room take charge of me.
Now,I go to put on my smile. Like the song goes, "smile though your heart is breaking..."
I'm a "gym rat" who works out daily, so helping my 125 lb wife isn't much of a problem. We've been lucky to have traveled to some great places, but I think our "vacations" are done. At least at home, we have a support system. On vacation, she has a great time, but I'm on duty 24/7. It would be great if some us on the site could get together personally but we're so spread out. If anyone's from northern Jersey or vicinity, let me know.
Joisey guy The term "limbo" works on so many different planes for what we are going through. We have put life "on hold" or pressed the "pause" button, until we can get on with the next stage of the disease. Our last real vacation was in 2010. Some overnight trips last year made me realize that any thoughts of a trip together were pipe dreams. So we don't travel anymore, we rarely do anything outside of the routine we have established that keeps my DH relatively happy and secure. Our normal is not normal. I hate to say it, but I am beginning to look forward to the next stage, when my hubby is placed, so that I can have some freedom to do the things I want to do. I am tired of living in limboland!
No, you're not being "selfish". You are taking care of Ann and have placed yourself in second position. Life as we knew it is no longer ...the new normal is limboland. At times (more so than I care to admit ) I feel despair and desperately alone.
I wish I could offer you some advice, but at this time I feel exactly as you do. It's so very heartbreaking for all of us.
lulliebird, I hope tomorrow is better too but I kind of doubt it! I feel exactly how everyone here feels. joisey guy, religious people do say that God doesn't give us any more than we can handle but...to kind of try to support what they say the scripture goes on to say that he wouldn't give us anymore than we can handle but will make a way out so that we can endure it. I know what you mean though because I have been fighting my mind over this for a few years now and it is not getting any better. I don't want to just endure it I want it to be over so that I can get out of limbo. Yes, I get up every day and yes, I am reasonably healthy, and yes, I have not killed myself over what is happening but...I see others that are actually LIVING!!! That's what I want and I have no idea how many more years I am going to be in this dark hole called limbo. I live on anti-depressants and tranquilizers and Lorazapam for panic attacks. That is NO LIFE!!!
I followed this thread all day yesterday, kept coming back to it...but just couldn't get my thoughts organized to chime in.
For the most part I think I am doing OK. I work hard at acceptance and at keeping a positive attitude, being grateful for all I do have such as good friends, good health, and the fact that DH is not too sick yet.
BUT it seems as if sadness (grief) is a constant companion in my life, lurking in the shadows, always waiting for a chance to pop in and take over rather like an unwelcome and overbearing guest. Even when I am having a good day I can, without warning, get a huge wave of sadness that seemingly comes out of nowhere. And on a good day it passes. But on a bad day it just settles in and takes over.
And thank goodness for this site where we can talk honestly with people who understand. No, Joiseyguy I don't think you or any of us here are being selfish. I think the fact that we are still with our spouses and on this site trying to get support confirms that. If we were selfish we would have left right after the diagnosis (and fantasizing about leaving doesn't count! lol)
Just as an aside: I too miss "quality time" but would recommend against approaching your wife's health care worker. The opportunities for it going wrong are many. It might be safer to look outside that circle of care. Just sayin'......
Lorrie, my husband too starts each day with "What day is it? What are we doing today?" And then probably asked "What day is it?" at least 20 or more times during the day. And I notice that he can't handle groups any more. Our son and his wife and 2 toddlers came for supper last week and in the middle of dinner DH stood up and said "I have to go lie down." Nobody minded but that was a first since he usually loves when they come over and the noise and confusion never bothered him before.
bqd, I feel like my life is in limbo too and the leash is getting shorter. My DH is not as far along as yours but I see changes happening regularly and feel like the noose is tightening around us. We got an unexpected opportunity to go to Florida for November and I struggled about whether or not to say yes because of managing him through the airport experience and then for 2 weeks of the trip we will be alone just the two of us and I too will be on duty 24/7 but in a strange house, neighbourhood, etc. I wondered if it would be too much for me and too confusing for him but then I thought "well any trip we take at this point could be our last one" and so I have decided to go for it.
It's 4 a.m. as I write this - not a good sign. Insomnia makes everything worse. Let's hope we all have better days tomorrow.
Ring, I know the struggle of trying to decide whether to take the trip or not. And yes, any trip you take together as a couple could be the last. I know you are mentally prepared for what you are going to face when you go to Florida - it will be stressful for both of you, but I know you are strong enough to handle it. Try and have a good time while you are there - get outside and enjoy the warm weather because you definitely can't do that at home in November!
Yes, the leash is getting shorter - I have now given up my Victoria Quilts volunteer work because its just too much of a hassle to find a caregiver while I go to an activity I enjoy. Its something I know I can go back to after placement, which is a good thing. So, once more I am in limbo.
Reading this thread brought back so many memories of my suffering during the first 6 years while my husband was at home. I wish I could offer some short-cut to the intense pain, but I think there's no magic way to get through it. I moved my husband to an ALF a bit over 2 years ago and that's when my life started to change for the better. Based on my experience, I would say to consider LTC placement as soon as your emotional/financial situation will allow it. Before that, hire as much in-home help and use adult day programs to the maximum extent possible so that you can get as much time away from the disease as you can. I tell my support group members to "save yourself". It is tragic that the only way we can accomplish that is to get away from the person we love most in the world--but that's the sad truth. Otherwise, dementia will drag you down along with your LO.
As far as traveling with an AD spouse--Joan put it very well some time ago when she said it is "moving the work to another location". So it's not like the trips you took with your spouse before the dx, but I'm glad we did some great trips before the window on travel closed completely for my husband. For you newbies, scroll down the home page and on the left, you'll find a Travel Tips section. I particularly liked the physician's letter and having one gave me a sense of security in the airport, whether I needed to use it or not.
When I made the comment " May tomorrow be easier and peaceful" I was trying to maintain a positive attitude that just a few of our many challenges maybe reduced by good nights rest. Having that good nights sleep does allow me to handle my worries in a more mentally clarified manner where physical and mental fatigue seem to magnify my worries more. As this disease progressives it seems sleeping well for the caretaker spouse is challenging. I lay awake almost nighty thinking "what if" ????? No sleep = a bitchy lullie
Joisey--I think the stage you're in may be the hardest bit of the marathon. I'm past it by a few years now, but I had that same feeling--that felt somehow wrong to me at the time I had it--that I almost wished he were more advanced so I could begin to re-form a life somehow.
Well, it happened. Another rough transition, yet also somehow easier in the sense that we were in a crisis stage--and at least in the midst of a series of crises there are things you MUST do. I called the stage you're in the "doldrums," because it seems so desolate, hopeless, and endless. But it ends, and launches you into something you must actively manage.
It's all stupid hard. I realized, in stages, that there was no way I could sustain the state of despair that Alzheimer's foists upon us, and I had to find ways to cope, and eventually move on. His transition to the point of not knowing me or where he was, and becoming totally dependent on care, freed me, in a way, to rejoin the world of the living. I did that with conflicted emotions which are ongoing. I oversee his care, will always love him and be there. But eventually I had to choose happy, and eventually life let me do that. I think you will get there.
All of your comments brought back a flood of memories. I have to chime in with marilyn & emily. My DH is in the Veterans Home & even though I go & see him almost every day I have started to take my place in the “land of the living” again. When I walk into his unit I am there with him & engage him as much s possible. But when I leave the building I leave him there. I can't dwell on what has happened because if I did then I would be a basket case 24/7. Does that mean I don't think about him or answer questions about him “when” people ask about him (talk about the 800 lb gorilla in the room......people just don't want to ask about him!) No! I DO think about him & talk about him, but I just don't dwell on it. Another thing happened that Nikki said would happen........I found the love for him that I thought was GONE! I look into his eyes & I see the eyes of the man I married 44 years ago. I thought that maybe I was just feeling pity for him, but NO it's love.
Elaine--I remember your early posts and how miserable you were at that time. It is good to see that you are starting to heal and you have the love back in your heart for him. I feel the same way about Steve--it's not pity.
Yes, I'm in this boat too. I plead guilty to the fact that I've fantasizes about what all I can do WHEN my dh gets to the point where I can place him. I hate living in this limbo, my life is on hold, but my numbers keep pushing up up. I am torn between my responsibilities to my marriage of 43 yrs and my responsibility to myself to be content in my life. My golden yrs have really been cloudy so far. My heart goes out do all of us in this boat.
My original Post was a copy of an email I sent my sister. I never expected so many responses in 24 hours. I appreciate all the support that only fellow spousal caregivers can provide. Thx to my wife's paid companion, I hit a ton of golf balls, worked out, and spent 4 hours where I work as a Personal Trainer. A 7 hour furlough with people who have no clue as to what I come home to. Tomorrow another "companion" from10-5. Don't know what I'll do other than go to the gym, but just being free is for the day is a blessing.
Interestingly, I had not visited this site for quite a while because I found it so depressing. Lets face it, no one wants to be here, but it is comforting to know others feel the same way I do, and that my anger, frustration, and depression are not unique.
My 2 cents here. I placed my husband a month ago and I do feel the transition has been easier for him then me. I am still trying to adjust to him not being in the house and as one person told me when u place them it is still not over. It is just different. I am seeing a therapist next week to hopefully work through some of my grieving. I think the hardest thing is just giving up control and wanting to care for them but realizing you need help. I have been through caregivers, daycare which he hated, respite and now placement. When he went to daycare it was overwhelming for him. He did not engage is activities then and still does not. We all need to move on with our lives as best we can. I was determined from the beginning not to allow this to consume me. You r doing a good job Joisey guy
Limbo - always wanted to be good at doing the limbo! This limbo we are in is not the kind I was referring to!!
I have to say, each time someone places their spouse I wish it were mine being placed so I could go on with life. Or someones spouse dies I wish it were mine. Usually because they had great marriages and great love between them. Mine was not, never had the courage to leave. Sometimes I think this is my punishment for not leaving years ago. Oh well, life goes on and one day this too shall end. Hopefully I will be healthy and able to build a new life. I turn 61 soon - feel the clock is ticking away without me.
I hear ya "sis'ta" It's very difficult caring for a spouse when in the first years my marriage it was filled with dishonesty, deceit, and infidelity . I truly believe that my husband had the creative and cunning ability to pull his escapades and charade of lies, cheating with no empathy or guilt BEFORE frontal temporal or Alzheimer's was diagnosed . He's a narcissist who now has Alzheimer's disease. He had this personality disorder prior to AD rearing its head. When my discoveries were validated and he confessed to whoring it was ONLY because he had lost his creativity to cover. No, I can't excuse it on AD. I believe that his lack of empathy, infidelity, and his sense of entitlement and behavior were all his Narcissistic Personality Disorder rather than the Alzheimer's disease.
lulliebird - mine was diagnosed 'detached personality disorder' as the reason he felt no remorse, guilty, sorry, etc for what he did. I often wonder if it was not very early warning as to what was to come.
On the sheet of losses this last year I gave to the doctor at the bottom I told her what happened in the 80s and if that could any way be related to the Alzheimer's. She didn't have a chance to answer at the appointment. Even though I would love to hear the answer, doubt I will.
Elaine, I am just now reading your reply and I wanted to let you know it caused a few tears... I am so happy for you to find this gift in the midst of so much pain and heartache ((hugs))
Josey, I don't visit the site as often as I used to for that very reason. I know it sounds so selfish! But I spent my time in hell and I have worked really REALLY hard to get to where I am now. Too much negativity just sucks the life out of me, so I have to take mini breaks. Most here understand that.
I am glad you are getting some breaks, as you know it is vital. I look forward to hearing more of your story ((hugs))
"detached personality disorder" is a symptom of Narcissist Personality Disorder just as dementia is a symptom of Alzheimer's. My heart goes out to you because there is no remorse, there are no apologies, and it has nothing to do with you or your punishment. It's his disorder and you happen to be an innocent victim.
Although I've been a member here for quite some time, I've never posted. I do read many of the discussions, but to be honest, they scare me to death. My DH recently turned 64 and was finally correctly diagnosed with younger onset Alz. almost 2 years ago. I had seen the symptoms for at least 2 or 3 years prior but none of the doctors were looking for Alz. because of his age. He is still in the early stages, but who knows for how long? Tomorrow I'm taking him for a driving evaluation and I'm a nervous wreck that he will pass and I'm equally as nervous that he won't pass. All of you reading this understand. I also live in north Jersey and haven't found any support groups for spouses. If you know of one, please let me know. Most are geared toward issues faced when dealing with elderly parents with AD.
Maybe I should join one of those support groups because my mother (almost 89) was also diagnosed with AD and I'm in the process of trying to place her. She is currently living at home with aides (not live in because she refuses to have a "stranger" sleep there). She lives 90 miles away so it isn't always easy for me to help her with her ever increasing problems. Cross your fingers that she stops resisting my help and goes willingly to the lovely facility near my home (highly doubtful). I've been handling her affairs as well as our own for years.
So I guess I'm back to wondering about your original question about God only giving you what you can handle because my plate is getting full! I am thankful for having 4 adorable little grandchildren who light up my life and always make me smile no matter how bad a day I'm having.
All of you reading this have shown yourselves to be capable of such love and strength in dealing with this horrible, horrible disease. It is stealing both my mother and my husband and I can only pray that I will have at least half the strength and compassion that you have as time goes on.
Thanks for letting me vent....it was long overdue.
MimiB , glad you got up the nerve to come on and vent. I belong to a support group that is mixed. There are currently only 3 or 4 members whose spouses have AZ but it is a good group where you can vent and may get some suggestions. There are quite a few who have stayed after their spouse or family member passed. They are a good addition to the group.
Mimi, I know there are some spouse and partner groups in NYC, but I haven't called yet. Most local groups I've found are populated by people dealing with elderly parents. Perhaps we could try to start one with an organization. I'd be happy to discuss with you but I dint know how to give you my contact information without sharing it with everyone else. I've hired companions for my wife 5-6 days /week which frees me up maintain some connection with my "old" life. You are the first person I've connected with in northern jersey who shares our unique situation.
Joiseyguy - there are different ways to get contact info to someone: via Joan but she is overwhelmed right now; put it in your profile that only members can see; if you have facebook you can contact each other through it; or post here and delete as soon as she has it.
another option is to set up another email to use just for instances like this. Once you get in contact, ,you can go to your regular email. If anyone should get that new one that is setup, they won't get far.
Joisey and MimiB, I too live in NJ but in Western NJ. I am about 1.5 hours from Bergen County if that helps.
There is a spouse support group for people whose spouse has younger on-set alzheimers. It's run through the COPSA program which is run through UMDNJ / Rutgers University Behavioral Health in New Brunswick. I believe the support group is held during the morning. You can google COPSA NJ and find more information about it. I have not attended because it is difficult for me to get there when they hold the meetings. They also sponsor a support group at the same time for the spouse with Alzheimers, so you both can go at the same time. I've heard good things about the program.
I know I am kinda waving to you from the other side of the abyss, but enjoy the time you have with your loved one. I know it's hard. I know it's devastating. I know there are days that you pray to live just one day longer than your spouse so no one else will have to pick up where you left off (when it killed you). It takes a lot to realize and accept that this journey will end one way and only one way. It took me a long time to realize that there was no hope...no light at the end of the tunnel that wasn't an oncoming freight train. Then I decided I was going to get all I could - hugs, kisses, touching - while I still could. Everything else could wait. Cleaning and dishes and laundry could wait until tomorrow...loving him may not wait. I am so glad I did it this way because now that he is gone, I can close my eyes and remember what his face felt like. I can remember him pacing through the house and being excited almost every time he found me again. Please don't get caught up in and drug down by the labor of it all. Get all the love you can while you can.