Ours is (was) a 49 year marriage. So many years were spent trying not to put hubby in a situation that would provoke rage. Like previous threads-who knows when bad behavior becomes a symptom of FTD. I've been living in hell for so long that even though hubby is in an ALF I feel only resentment for all that I have been through. I pity him but feel no compassion. I have never cried, felt once I let go I would not be able to put things back together again. I feel guilty because some tines I feel he got what he deserved. Of course I know this is the disease. Allowing him to be always right no matter what has left me exhausted.
I understand! We understand. You must see your husband's physician to get the proper medication. I went through the very same think with my 61 year old Alzheimers husband. Effexor and Risperdal performed miracles- now he is a pussycat!! I actually felt hate for my husband, as he was sooooo mean and rageful. I was so stressed, I was filled with anger and resentment. It was difficult to be around people, as he was mean and nasty. Now, he is so nice to be with. Yes, he has Alzheimers- cannot remember anything, he is like my child, his words are becoming tangled, he needs me to prompt him in everything- but he is sweet- and I can handle everything, as long as he is this way. Bless you, my dear- I understand. PLEASE get to his doctor.
Actually, bluedaze, get to your own doctor. Your husband is in an ALF. You can ask if they think he needs additional meds to even out his behaviour and if so take care of that for them. But you, yourself, need help. You probably need counselling of some kind, if for nothing else then to allow yourself to grieve.
Me too, by the way. I'm not dealing with rage, just a bit of manipulative grumpiness. But I also probably need some professional help with my own issues.
I think that under normal circumstances we should all be able to handle the trials and tribulations that come along with life, but AD is not normal and when Starling talks about getting help for yourself, she makes a valid point.
My niece went to a counselor to help her get thru placing her mom and it really helped. Some of the seething that comes thru in some of these posts cannot be good for anyone. Please get help to smooth out your life, to keep you from getting physically sick. You still have your own life ahead and living with AD, even if your LO is in a facility, is not normal. You won't be sorry.
Starling and Bettyhere took the words right out of my mouth. Please talk to your doctor, get a good referral, find a way to work through the resentment and exhaustion and guilt (stupid, stupid emotion for someone in your position). You need someone to talk to. We're here, and I hope that helps, but you need more than we can do for you. At the very least, I hope you have a trusted friend to whom you can pour out your heart. Or, sometimes, just writing in a journal, saying anything and everything you want to say, knowing no one else will ever see it, that can help, too.
When I read what you wrote, the first thought that I had was that sometimes you can start to heal by treating yourself with the same consideration and patience that you used in dealing with your husband. While caregiving, it seems like most of the time what we need or want comes a very distant second to the needs and wants of our LO. But if that goes on forever, it takes away all our joy in life.
In regard to seeing a counselor, I went that route some years ago myself when I was diagnosed with cancer. I knew that was something I would need outside help in getting through. (It really saved my life, as much as the cancer surgery did.) And dealing with cancer seemed easy, compared to what being a caregiver does to you.
Please don’t be afraid to cry. Crying actually gets rid of toxins from your body, which helps your immune system. And it just takes a load off your spirit to be able to unload some of your feelings that way.
In addition to whatever the medical profession can do for you, please start spoiling yourself. Eat chocolate in bed. Play music really loud and dance in your living room. Buy yourself some flowers. Rent a chick flick that you might have missed because your husband didn’t like movies like that. Eat your favorite food whenever you want, even if it’s pizza for breakfast, or waffles for supper. Whatever can add joy to your life, please start giving it to yourself. Eventually your mind and heart will say “You know, I LIKE this”, and you will slowly start to feel better.
I feel like when our caregiving journey is over, healing from it will be the emotional equivalent of convalescing after a very long, serious illness. We need to give ourselves lots of time and emotional support—and yes, pampering. I think we all deserve it.
Jan K You are exactly right.After my DH passed I decided for once in five years I needed some caregiving and I began the chore of healing. I still have to remind myself that I'm not a caregiver any more, and some days I'm lost I don't know what to do anymore.I had to rush and do everything, I thought if I didn't hurry I couldn't get it all done and now I find myself still wanting to hurry.I wonder if we ever get over AD.
I think I'm starting to answer my own question. I am not a religious person though I am very spiritual. Lately I have been going to my temple and finding peace. For the last few years my DH would get into horrible arguments whenever we went to services and I was too upset to get any comfort. Now I can ponder on why I am there rather than worry about the next temper tantrum. I am starting to remember the good parts of our 49 yr. marriage. I was (an still am) feeling guilty about hating my spouse for putting me through so much misery. I feel like the petals of a rose slowly opening and some of my resentment going away. I still have a long way to go.
I have found myself thinking about my Mom lately. My sister was born cerebral palsied and my Mom cared for her until my sister died just before turning 60. At that point my Mom was 88. She weighed just over 100 pounds and somehow managed a lift for getting my sister into the bathtub every other day and did all the caring for almost 60 years. My sister was very demanding and selfish, to boot. How she did it I'll never know - not a day of respite unless she was in the hospital herself. Through all of that she remained upbeat for the most part. I am so glad we had a few years (she died in our home just before she would have been 92) when she got some rest and we could be together. This may be off topic, but something I wanted to share...
Frand , Thank you for sharing the story about your mom.I think it helps to think of the sacrifice of others. I have worked with individuals with mental ratardation all of my adult life. I have had the opportunity to see family members provide care for a loved one for years and years with little or no help. I have always felt that these people were the true heros of our world...not the sports figures or certainly not the movie stars or politicians. I often wondered what I would I do if I were in their shoes. Could I be as loving and giving ... and frankly I never thought I would measure up. But here I am , and it has become truly important to me to do a good job. I think it really does help to know what be reminded of what others have done and are doing..... so that we never fall into thinking that we are the only ones who face such challenges....
Frand.. on another note I got the CD and its beautiful.I emailed you as soon as I listened....Did you get my e-mail?
I know a woman who has cared for her paralized son for decades, and she has other sorrows in her life as well. I would never have traded places with her. People tell me AD is the worst thing in the world, and I agree that it is up there near the top 2 or 3, but it's not the worst. My sister lost both of her adult children. I would never have traded places with her. This is not to say that AD didn't break my heart into a million pieces over and over and over, but at the same time I am grateful that my DH had a life--all in all a good life--and he gave me joy and wonderment until he no longer could. That's no small thing.
One of the disadvantages of RV travel is that I don't always have WiFi. Right now I'm in a library, for which I am grateful. Laurie, I did get your email and tried to reply but it wouldn't go through so I printed it out and sent it snail mail.
For all of you who did not order the CD of Lullabies offered by Frand, I urge you to get it. Send an e-mail to: franandhank@escapees.com. The songs are beautiful and very relaxing. My wife thoroughly enjoyed it. And Fran has a lovely voice.
Thank you, lmohr, for bringing this topic back to the top. In reading bluedaze's coments from April 2008 I realize that we have had similar experiences with our DH's. I had such resentment for him for so long. As his behavior became steadily worse over the years, I just wanted him gone. Now with his FTD dx I realize that was the problem. Doesn't make it better.... you have spent your married life (in my case 45 years) coping with this behavior. It does wear you out! Now we are controling this unsavory behavior with pharmacy and things are better for us and for him (he is sweet now), but married life is over. Guilt? yes...that you don't really care for him any more(personality wise)....strange, I still love him and want to take care of him.....sometimes you just can't make up for years of abuse of one kind or another. Does anyone else feel this way? I do know this, it will take time, after the caregiving, which may take years, to regain my footing. I feel numb, in this dementia tunnel.
Yes, I feel this way, too, and for the same reasons. What keeps me going is my nurse's background: he is sick, he is a human being; I will help him in whatever way I can.
Add me to the list..and G really isn't that far along (I don't think), but i just want to be away from him. He's been fairly mellow lately, but yesterday he started in the temper tantrums (snow came here again), and this morning was awful when it started snowing yet again. The idea of spending the entire locked inside with him makes me nauseous.
I am so thankful, mary75 and kathi37 that you responded to my comment. Do your husbands have FTD? My DH is now in early stage 6 now. We have added Namenda to his Aricept, Depakote, Paxel, Risperdal. He is deteriorating rather quickly. I truly am sorry for that and feel sad that our life together will come to this ending.
I, too, have thought he is getting what he deserves. But my feelings are based our history. Our first 8 years were good except for the stress of trying to get pregnant. When I couldn't, we adopted a brother and sister. He suddenly became the absent parent and husband. I had to stop playing softball, bowling and other activities - he got to keep doing it plus started working late. He never did bond with them. My life was devoted to the kids and making his dreams come true. I became a very angry person - something that i did not know was in me.
Fast forward: in 1985 it was found out he was having an affair for the last year and a half with a teenager he had talked me into fostering. He was diagnosed as having 'detached personality disorder'. He had counseling and was announced cured!! Despite asking him many times, he has never said he was sorry. I believe he was only sorry he was caught. Is that part of the 'disorder' he was diagnosed with? Because it was deemed she was consenting it was lessor charge, served a month of work release then 2 years probation.
Needless to say, our marriage was never the same. I later figured out I stayed with him because I felt no one else would want me and we didn't want the kids to know. I can pretty much say out of almost 38 years marriage, only 10 have probably been good. I tell people that our marriage has been to hell and back. When we went to Nevada to work last May it was in hopes that being away from kids and my family, we could work to get something back. We did enjoy ourselves and for the most part was happier than in a long time. But then we lost our jobs and I had to spend 24 hours a day with him forgetting and repeating.
About 1987 his dad was diagnosed with Alzheimer although he showed personality changes as early as 1985 (I noticed it when we were back there that year). Believe it or not, to the doctors amazement he is still alive. We knew it ran on his dad's side of the family, but had prayer and believed he would not get it. His younger sister was diagnosed at 55. In the mid 90s I went into a severe depression and had year of intense counseling. The first couple years after the affair our sex life was great but purely physical, not emotional. Over the last ten years I would say, is when it really started to decline until ED stopped it a few years ago. I blamed my weight or not being a slim pretty young woman on the reason why. It was my fault cause I could not get pregnant - fortunately she didn't get pregnant. I took all the blame for all our problems until I went through counseling.
We have not been emotionally connected as two people 'in love' for a long time. We are friends - enjoy a lot of the same things and emotionally detached is how we live together. We were out walking the other day and i told him I miss the old days when we use to go camping, hiking, fishing and had fun. Even though he has only been diagnosed with MCI, I don't know if I can go through this. I know I can't leave, but can I go through what lies ahead? Right now I resent him for making me deal with how he currently is: forgetting and repeating. I look back and wonder if the 'detached personality disorder' was really early symptoms of AD? Was the ED an early sign? I know he has been depressed for a long time but despite what I said he would always tell the doctor he was fine.
So you see - I still have anger/hurt from all the years of h*** he has put me through (more than I wrote), so a part of me wants to think he deserves his future. But, unfortunately I will have to go through it too. And thinking about how long his dad has lived with it - I could never take that long. I have to not think cause I will think 'do I really want to try these things like coconut oil to see if it delays or improves it?' I know I have to and as long as I turn off the emotions I can. I feel guilty because most here post of how great their marriages were - I am happy you had great marriages.
I won't really know how I feel until the time comes. I need to start journaling again, but that would mean crying. I can't do that cause we are around each other 24/7 - no place in a motorhome to get alone.
((Charlotte)) Your post just broke my heart. I am so sorry for all the hell you have been through. I know the only reason I have been able to care for Lynn this long is because of the relationship we use to have. I can't imagine trying to deal with caring for a spouse with Alzheimer's if there wasn't that foundation to help me through. Without it, I know in my heart I couldn't have done it. The sad part is AD is not just the patients disease. It also impacts your life greatly. Have you considered placing him? Maybe this would give you time to heal. Have him far enough removed that perhaps you would be able to visit him without it destroying what is left of you. It is time to take care of you. Keeping you in my thoughts and prayers, Nikki
Charlotte, I am so sorry for what you have experienced. You said you feel guilty because most here post of how great their marriages were. I don't feel guilty, but I often wonder what that must have been like. 2 people devoted to each other. Sometimes it is more difficult to read about the past happiness they had than to read about the difficulties in the present.
You don't have to answer, but I wondered why you feel you can't leave.
I think to be emotionally estranged might be easier than losing someone who was your "soul mate."
He is not far along at all - the neurologist in Las Vegas diagnosed early AD but the one here in Portland diagnosed MCI - not AD yet. Our relationship is more like roommates that care about each other, but not a marital caring.
As for not leaving - I had the option when I was in counseling. I didn't think I could cause I didn't have grounds anymore. When he first had the affair, even though I had Biblical grounds, I didn't leave for the reasons I gave. According to my beliefs the only grounds I have is adultery and I didn't leave when I had the opportunity but chose to stay. Now, I can't leave cause he would be lost - I have done everything financially and now he would have no idea what there is to pay. And financially we can't afford to separate since our only income is his unemployment - I am still waiting to be approved. Otherwise I feel it is my responsibility to stay. The positive is if the time should come to place him, he will be able to go into the VA Alzheimer unit. I won't have to worry about how to pay for it.
Also, at this point in time I would receive too much preaching from family if I left him. You see, none of my family knows what has happened in the past. We lived far enough away that they never knew. If I left and said it was cause I never got over what happened in 1985, I would really get the preaching and with his illness I would get the guilt trip.
We finally told our kids when they were 17 & 18 why their dad went to jail so many years before - only cause our daughter somehow thought it was her fault. When he was arrested they questioned and searched them at school to see if he had sexually abused them. Our son (age 9) refused to answer their questions and be searched, but our daughter (age 8) allowed it. Then he was arrested that night - so she assumed it was cause she let them and talked to them.
There is also 'greed' involved. His mom died suddenly in 2001 (literally killed herself taking care of his dad) and his dad was placed in the VA Azheimer Unit. No one expected him to live this long - even the doctors are amazed. Anyway, once he dies, dh will inherit 1/3 of the estate which isn't much but it will be enough to pay off the motorhome and any other debt. I figure with all he and his family put me through, I deserve to hang around to enjoy it. His parents never liked me either - I took their son away!!
I also envy all you who have had a good, loving marriage. I am truly happy for you - what a blessing and gift. I think cause of growing up with parents who didn't talk and my marriage is why I have always loved the family shows like Donna Reed, Ozzie & Harriet, The Real McCoys, Little House on the Prairie, etc. - happy families the way God meant them to be.
My sister finally met her soul mate when she was in her 60s, maybe I will have the same chance. Maybe through his illness I will have healing, especially if I can say it was all early signs of AD. He was in his late 30s which is when some articles say the symptoms could be showing but not be really noticed. Only God knows.
There are others here who didn't have a great marriage, though my story is not as painful as yours. I don't feel I can leave because the burden would fall on our kids--my husband has no other close family. I'm hoping that with the kind of emotionally detachment you write about I will be able to manage my husband's care as a practical thing. But I have the advantage of a good job, which I intend to keep even if I end up paying most of my salary for a caregiver while I am working.