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Originally posted by: shearbear
Hi Genevievein,
My heart goes out to you. I understand completely how you feel and your loss.
Sending you hugs and love,
Sharbear
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Joined: 1/14/2015
Posts: 40463
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Originally posted by: genevieveln
HI, I have posted a few replys but never a real introduction, and it seems like the best way to get support and feel a part of the group....
MY DH is 71, I am 55; been married 15 1/2 yrs, at least 10 have been riddled w/behavioral problems. He was officially diagnosed with Bi-polar disorder 5 yrs ago, but dr, said probably had it all adult life, which explains a lot. 7 yrs ago had diagnosis of mild cognitive impairment and the last few years it has been called Frontal Temporal Dementia. I would just like to call it lousy. I was in my 40's when it all started and I feel like I'm 100.
I was just looking out our front window at the most beautiful full moon and he is in the family room, glued to the tv. I feel so lonely. I miss sharing my feelings and really talking..like we used to. There are moments of clarity and "the old life", but they are fleeting and it is a constant state of acting helpless and needy, clinging...not the older, sophisticated guy I fell for; the medical professional I was in awe of, so smart who showed me so many different things.
No one but a spouse of someone with this awful disease can understand the loss of a partner. I visit with girlfriends who complain about their husbands who work, are amazing fathers, who care about them and I want to scream at them. They do not understand. That is why reading your posts has helped me so much in the last week or so I found this. I am not alone and my feelings aren't abnormal.
I will look forward to sharing more with you all. Hope you are all having a peaceful night. Thank you.
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Originally posted by: RHW
Yes, we all share the same feelings. It is hard to explain to others how lonely you can feel while still sharing the house with you spouse. I am so sorry that you are dealing with this.
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Originally posted by: Lorita
Hi Genevieve,
After I read your message last night I went out on the porch and looked at the moon. It was beautiful but it did make me feel lonely. I can empathize with you completely - it is hard knowing what is ahead of you and not being able to do anything about it. It is really frightening. When the moon is full and beautiful I always call my husband to come and look at it but l last night he was asleep. We just have to realize that we have to take advantage of every moment we have with them when they're aware of us and what is happening because we know the time will come when we can't share with them. We have to live for the day.
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Originally posted by: Jim Broede
There is no ideal solution, Genevieve. But here’s what I’d consider. Put husband in a nursing home. Visit him often. Maybe even daily. But come home daily, too. For vital respite. In a sense, build two lives. You need to build a new life without your husband. Away from it all. As much as possible. Without abandoning your husband. It’s the decent and humane thing to do. For husband. For you. You have to get away from a 24/7 grind. And you have to try to do it all without feeling guilty. Recognizing that you can’t be everything to everybody in your life. But maybe you can find a decent balance that you can live with. And survive. And thrive. --Jim
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Originally posted by: Amy Ann
Welcome. I am so sorry for what you are going through. It really is hard for others to comprehend. I'm glad you are here.
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Originally posted by: FluffyChenille
I feel for you. I am dealing with a father with dementia, and while it can be a lonely experience, I have to believe if it's your spouse whom you relied on as your best friend and companion it has to be far more difficult to handle. What a terrible thing life does to us sometimes. We hope to grow old with our loved one and share some great times in our retirement years before our lives are over.......and then something like this happens to rob us of all that time. That's what happened to my father as my mother had a brain disorder in her early late 60's and all the retirement planning went out the window for them. My Dad took loving care of her but he was so lonely. No matter how much I tried to help him, he was still dealing with slowing losing her and watching all their dreams fade away. Now he has dementia and I am caring for him. He is getting closer to the end of his battle at the age of 88 and all I can hope for is that God takes him peacefully when it's time. I will add you to my prayers and ask God to make this easier for you and your husband.
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Originally posted by: SherylS
My hubby still smiles and will respond but just with one or two words...unless he wants something then I'll get a 1 word request. ( salt!)
But he never just starts a conversation any more nor makes comments to what he sees on TV.
On the other hand, there are no longer any bi-polar outbursts about things I've done wrong recently 
"I am the boss of you" is what I tell him...and he just smiles. A play back to the time we babysat our grandkids for 2 weeks when a spunky little 8yr old told us "YOU AREN'T THE BOSS OF ME". I laughed and assured her that we were..for the time being.
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Originally posted by: Linda Dianne
genevievein
I hear you loud and clear. I care for my husband too and we use to do everyting together and share so much. I have times where it makes me sick to my stomach that I can not share things with him anymore cause he just dose not understand and he will not remember what I said. It is so sad.I wonder what kind of life is this. But at the same time I know God is there for me and he will not give me more than he knows I can handle. He also has put you all in my life and so many others. I will be fine with what ever Gods will is for me and my husband. God bless you and your husband. Your sis in alz Linda Dianne
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Originally posted by: SherylS
I hear you loud and clear. My hubby was diagnosed as bi-polar 16 yrs ago. However, for the 26yr before that I'd go through his 6 week cycles of just having to explode and I or the kids were usually the ones in the line of fire. Every day when the kids came home from school they'd say "how's Dad today" and that would set the tone. We didn't even realize it. It was a way of life for our family.
Our 3 sons have all married screamers. They say you marry what you are used to. Back in the early days of our marriage, I just thought he was having a bad day!
It wasn't until our daughter was grown and became a nurse that she put a name to it! Yes, he did get treatment and continues to take his Depakote which has made the last 16 yrs so much nicer..he's the man he was always meant to be..and now comes Alz!
As before, people just say 'oh how wonderful he is, so charismatic (typical of bi-polar) and oh so handsome.....sure the black hair is gone and at 68 he's gray, but still so handsome.
Sorry folks, but Alz makes all of that not count. They don't get it. They just see the smile and the surface things. The people at the bistro have no idea that "Mr. Handsome" was the one who left 3 piles of steamy poop out in their back parking lot before we discovered Imodium!!
So far, so good here. Nothing smeared on the walls or on the furniture. No wandering (even though he did stand out in the street in his black long legged briefs with a baseball cap last week and waved at the neighbor kids!) I just laughed and told him YOU ARE IN YOUR UNDERWEAR! Sometimes we gotta laugh, otherwise, we'll cry!
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Originally posted by: Suzanne F
I understand. I'm 52 and AD husband is 62. He was diagnosed at 56 but starting showing signs long before. Nothing hurts more than being alone in the same room with your spouse.
Hugs to all.
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Originally posted by: SherylS
I've read that Alz kills the patient and tries to kill the Caregiver. We have to save ourselves.
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Originally posted by: genevieveln
Thanks to all of you for responding. I'm so glad I started a new discussion to introduce myself. I am not ready to put him in a home; but I know that day is coming. I am encouraged to move forward on something I've been putting off for 6 months re obtaining a professional license for which I completed school in February. I will do that and it will continue to build my separate life. Action always energizes me....
Thank you again for opening yourselves up to me. It is incredibly comforting.
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Originally posted by: Starling
What you are feeling is grief. We mourn well before the patient dies and pieces of our lives disappear. We are widows long before anyone realizes it.
When I placed my husband a year ago I began to recognize that essentially I was a widow. I'm lucky that almost everyone I've said that to has just nodded and agreed with me. Almost everyone understands. But I'm living in an empty house. His body isn't here any more than his mind is. The loneliness starts a lot earlier as the relationship dies.
One of the best thing about the online support groups, this one and others, is that you begin to see that you are not alone. And it isn't that life as a caregiving spouse is harder than life as a caregiving daughter is. It is different.
Pain is pain. Grief is grief. Losing the relationship with the person who was your partner in life for 50 years is different from losing the person who was your parent and your rock when you were a child. Not easier. Not harder. Different.
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Originally posted by: Cathy J. M.
I like Jim's suggestion of building a separate life. For some of us, placement isn't necessary in order to do this; an in-home caregiver is enough (as long as we can get a good night's sleep most nights).
In addition, it can help to focus on the things you can still share with your spouse. Yes, some things you used to share, no longer work. But there are still things to do together -- so focus on those and make the most of them.
I've realized that though my life may seem very small to others, it can still be very deep.
Alzheimer's poses what Eric Maisel calls "a crisis of meaning" -- because what used to be most meaningful to us may no longer be possible. The answer is to create new meaning. (He wrote a whole book of "how to" on this topic -- designed to help artists and writers cope with depression, but equally applicable to caregivers.)
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Originally posted by: PANDORA BOX
CHERYLE.....IN RESPONSE TO YOU. IT IS A VERY LONELY LIFE FOR SURE. I OFTEN CALL IT SOME TYPE OF TORTURE.....EVERYDAY IS FULL OF SURPRISES AND MOST OF THE TIME IT IS NOT GOOD. MY HUSBAND IS 71 AND I AM 61 HE DEVELOPED ALZ 11 YEARS AGO.....WE ARE NOW WHAT I THINK IS STAGE 6.HERE IS SOME GOOD THINGS GOING ON RIGHT NOW..HE CAN STILL DRIVE....JUST TO OUR LOCAL GENERAL STORE.....2 MILES DOWN THE ROAD WE ARE IN THE COUNTRY...THAT IS ALL HE DOES....AND ONLY ONCE A WEEK....BUT THEY HAVE NOT TAKEN AWAY IS LICENCE YET.....BUT HIS BIG TEST IS IN OCTOBER. HE CAN STILL DRESS,EAT, LOOK AFTER PERSONAL NEEDS......WITH SOME PROMPTING.HE CAN TALK STILL BUT IS SLOWLY LOSING THIS SKILL
THAT IS HOW IT IS. ONCE A WEEK YOU WILL FIND ME HAVING A LITTLE TO MUCH RED WINE......JUST TO RELIEVE ANXIETY....YES IT IS A VERY LONELY LIFE....AN I HAVE NO IDEA HOW LONG I CAN LAST
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Originally posted by: PANDORA BOX
quote: Originally posted by Starling:
What you are feeling is grief. We mourn well before the patient dies and pieces of our lives disappear. We are widows long before anyone realizes it.
When I placed my husband a year ago I began to recognize that essentially I was a widow. I'm lucky that almost everyone I've said that to has just nodded and agreed with me. Almost everyone understands. But I'm living in an empty house. His body isn't here any more than his mind is. The loneliness starts a lot earlier as the relationship dies.
One of the best thing about the online support groups, this one and others, is that you begin to see that you are not alone. And it isn't that life as a caregiving spouse is harder than life as a caregiving daughter is. It is different.
Pain is pain. Grief is grief. Losing the relationship with the person who was your partner in life for 50 years is different from losing the person who was your parent and your rock when you were a child. Not easier. Not harder. Different.
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Originally posted by: Cheryle Gardiner
Sometimes I just want to cry - and sometimes I do - over all of the things that we had planned to do and never will. Our next trip in our 5th wheel, taking a trip to Europe - all things we planned and now won't happen. It sounds so shallow when I say it, but it's real grief. Everyone says, "Don't look to the past, look to the future," but I can't see a future sometimes. I feel like I will always be counting pills and putting them into containers, counting carbs, cooking (which I HATE to do!), figuring out his insulin. He isn't physically demanding - he can toilet, shower, and mostly dress himself - but the mental and emotional demands are exhausting. I even miss our evening glasses of wine on the deck. It's lonely lonely lonely. And it's only been a few months. How will I last for years? How have any of you lasted for years?
Sorry, I just needed to say it.
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Originally posted by: PANDORA BOX
STARLING
SORRY TO HEAR YOU PLACED YOU HUSBAND IN A HOME. I AM NOT THERE YET..WHAT STAGE WAS YOUR HUSBAND AT AND HOW IS HE DOING NOW. HOW LONG DID HE HAVE THE DISEASE
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Originally posted by: Starling
Pandora, my husband was at stage 6 and was both exit seeking and aggressive. The nursing home also runs dementia ALF, but he wasn't a candidate for that because of the exit seeking and aggression.
He is now stage 7, bed bound and unable to speak or even interact much with the staff or visitors.
His dementia is event driven. It has been almost 8 years since the event, and more than 5 since his diagnosis when he was at stage 5.
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Originally posted by: Starling
It is not shallow. For me as well this is not the retirement I expected to have. The trips we didn't take that I won't take because I'm partly disabled and it isn't as easy to go as one person as it was when we were two. The couples walking on the walk in our community that passes my house can make me cry even now. It is not shallow to mourn the relationship that was and no longer is and never will be. Just honest.
It has been almost 8 years since the event that caused my husband's dementia. It has been more than 5 years since the diagnosis. You asked how someone like me has survived. The same way you will. I was honest with myself about how I felt about the stuff that I had lost. I looked for online support because face-to-face support was too hard to get at. And I kept putting one foot in front of the other. Once I placed him, a little over a year ago, I started rebuilding the life that had come crashing down because of his disease, and my own problems.
I decided I was going to survive, and so I did survive. And will continue surviving until it is all over.
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Originally posted by: So Sad
My husband is still at home, but I know exactly what you are saying about being lonely. I am 49 and he is 58, we've been going to the Doctors for this since Jan. 2010, and he just keeps getting worse.
I found this website in October when I thought I couldn't take much more, but the Neurologist finally got him on some medications that seemed to help. Now unfortunately the medication doesn't seem to be helping much anymore and I am lost again.
I also feel left out or envious of friends and co-workers when they are talking about plans for travel, and fun things we used to do. I know it isn't good to feel that way, but I just can't help it sometimes.
I, like the rest of you sometimes wonder how everyone gets through years and years of this. I know that we just do what we have to do, but gosh how much can we all take?
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Originally posted by: Snorky
I can so agree with everything that is said here. I feel like I'm repeating myself as I've said all this before. But I placed my DH in May as he was getting pretty aggressive and combative. He went from the hospital to the NH which was a blessing that I didn't have to PUT him there. He has never complained about being there or blamed me but I think that is because he doesn't know where he is. Also has never mentioned home and he doesn't know who I am anyway. I visit at least every other day because I'm usually near there. We are rural so I go to town regularly. He never complains to me but is not cooperative to the help, like won't shower etc unless I'm there to encourage it.
I went on a 2 week vacation with our 3 kids and found when I came back I am more depressed about the loneliness, loving him so much but he's not there, being jealous of "couples" etc. I know I have to take hold and get more active in things and move on with a single life. Days at home are hard, I'm better when I'm busy and out.
He is stage 6 and was diagnosed 2 years ago so it seems to be moving fast. There were things before that, looking back, that I remember. I don't like the single life but I can't change it so just have to accept it and move on. Winter will be hard, there's just so much cleaning out drawers and closets you can do 
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Originally posted by: jan9231
I just want to be loved back!!!! That says it all.
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Originally posted by: terromari
quote: Originally posted by jan9231:
I just want to be loved back!!!! That says it all.
My LO is in a NH. He is aware but confused. I go just about every day. He calls me his sweetheart, talks to me, enjoys the activities, and tells me he loves me. Were it not for the exit seeking and combativeness that suddenly appeared after med change, and did not go away, I think he could have been home for a while longer. He is chairbound but is able to be walked a little. I dread the time he does not know me.
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Originally posted by: Snorky
So Sad, I feel the same way about our friends laughing, talking together and planning when I have no one anymore. I get jealous and envious too and I don't think that is wrong, it is just the way it is and is an honest feeling that anyone would have.
We were lucky we did do a lot of traveling after retirement which was at 60 yr. old but you are so young. I'm so sorry that you didn't get to do what you had plans for.
I also wonder how many years this will go and know it doesn't do any good to think about it as there is no way to know when it will end. I think we all have the same thoughts going through our minds.
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Originally posted by: Cathy J. M.
quote: Originally posted by terromari:
I dread the time he does not know me.
Don't make yourself unhappy dreading something that may never happen. JAB says it doesn't happen to all people with AD before they die.
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Originally posted by: Barbara Thomas
 Wow! These are the things that I think and have felt bad about thinking for so long. When we didn't know what it was I was so miserable. I thought "he hates me all of a sudden" after 26 years it's all over and he is mad at me and won't get over it. I cried so much of the time because I had lost my love and I don't even know what I did wrong. But then the diagnosis came and it helped me some to understand. Then I felt guilty because I thought life was over and it's not really that bad because once he went on the Aricept he came back to me a little. It still was not the same. Then when the counselor talked to me and gave me paperwork to read on grief, it finally all fell into place for me. Now things are pretty good with us. For now my DH stays busy sweeping the house, working in the backyard or in his room on his computer. He talks to the dogs more than he does me. He won't watch tv or sit in a room with me except for mealtimes. If family comes to visit I have to tell him to come and sit in a room with us to visit. These are just little things I tell myself and in the big picture they really are little things. He is fully self-sufficient and still drives and goes shopping and does a few other things. He wants to do things like he used to but just can't. He is still very aware of life and everything in it, but lives with the fact that at any minute it could all just be gone from him. I think these are the hardest times because things like being attentive or giving me a big hug for no reason seem to be in the past. DH is 65 and I am 61, so at this point losing that loving feeling is what hurts the most. It seems that everything happens in a sequence as to prepare us little by little of the losses ahead. I am not looking forward to the future and I only want to be happy right now and that's what we are trying to do. If anyone comes up with a solution as to how to do that - please let me know. I feel so sorry for the people who have not been married long and has this hit them. I've heard people say this is not what "I signed up for". I am grateful that we have had the years that we have (almost 2 and that we retired early to do some "retirement" travel and had that for 3 years. We should all seize the day and go with our gut feelings sometimes and just do that silly thing we've always wanted to do, like sell everything and travel in an RV. If we don't take a chance now and then we may miss out on the only opportunity we have. That's what we did in 2008. Left town in our RV and had a great 3 years. If we hadn't done that, it could have been so much worse for us - if we stayed where we were those subtle symptoms could have gone on for a long, long time before they were noticed. Living in close quarters in that RV helped us to know that something was wrong. Every cloud has a silver lining. Ours was found on the road. Our new adventure holds much happiness yet. We'll just take it as it comes. God bless us all.
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Originally posted by: Starling
The being jealous, the sadness when you realize that you don't have plans like everyone else, etc. is all part of the mourning you are doing. It isn't right to feel that way. It isn't wrong to feel that way. It just is the way you feel and not exactly surprising.
It is called anticipatory grief, and if you can get someone to talk with you about it, that would be a good thing.
There is light at the end of the tunnel although it is hard to understand that when you first find yourself in it.
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Originally posted by: zelda3
I just posted a new topic Lonliness and then saw this - thank you all for your profound wisdom.
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Originally posted by: Snorky
quote: Originally posted by jan9231:
I just want to be loved back!!!! That says it all.
Yes, I miss that most of all!
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Originally posted by: juneann
Ok I have just found this site and believe I know how you feel about being lonly. He sits right next to me in our chairs and he wants a kiss very other minute. I want to screaml. I love him so much but I can't kiss him every othr minute cause he doesn't remember I just kissed him. We traveled these US for 20 years in our RV on vacations. He is 81 and I'm 77. He has had Adz for 6 years now and he can't do nothing except feed himself most of the time. I have to dress him, take his to the toilet, put him to bed, put him in the car and out of the car, keep telling him to eat his food, hold his hand to walk, help him out of the chair and help him sit down. I have only left him 3 times for a couple hours at a time in these 6 years. I take him everyplace. I go Meijer to shop cause they have a wheelchair I can push him in while we shop for groceries. I do get so lonely. He can't do a conversation but he wants my full attention all the time. I feel like screaming all the time the last 6 months. He spits on the floor and furniture a lot and that drives me crazy. I like things clean and spitting to me is dirty. I know he can't help it and doesn't know better but in my right mind it drives me up the wall. He wants all my attention all the time. If I leave him in the chair and go out of the room he yells where are you. He is so lost. I feel so sorry for him. We have been married for 59 years and I know no life expect with him. How will I go on now and later. I have to find a way to deal with these last years. I will not place him unless Ican't handle it. Maybe I can find help. I can't think about anything except for now. I try to take one day at a time.
I wish I had an answer for you but I don't hve one for myself. I keep thinking God will help me but at times I don't think he hears me. I have 3 sons with families but they are busy. They think they understand but they don't really know how things are. He is different when somebody is here he doesn't want all my attention. He doesn't talk to family. We only have one son with his family that comes once a week. One son is so busy starting a business but if i need help he is here. Another son hasn't come to see us in 6 years. That is another hurt on top of my husband's AD.All I can say is hang in there but it doesn't get better.
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Originally posted by: JAB
quote: I go Meijer to shop cause they have a wheelchair I can push him in while we shop for groceries.
Hi, Juneann, welcome to the forum.
There is a lot of equipment out there that can make our lives easier. Try browsing through some of the online companies that sell supplies and equipment for physically and mentally challenged people:
http://alzheimers.boomja.com/A...nd-Supplies-385.html
SpinLife, in particular, has a huge array of walkers and transport chairs, with tons of information about them. (Once you know which product you want to buy, shop around -- the prices can be all over the scoreboard.) I bought a lightweight transport chair that I can easily heft into the trunk of the car, and so it's always with us wherever we go if my husband isn't able to walk.
A raised toilet seat and toilet safety rails can make it much easier for him to get on and off the toilet. Or maybe a bedside commode, so you don't have to walk him all the way to the bathroom in the middle of the night would make your life more livable. The list is endless.
If you can't afford very much, Medicare will pay for most durable medical equipment if you get a prescription from the doctor. And there are many places to look for used equipment, at little to no cost to you:
http://alzheimers.infopop.cc/e...784059087#9784059087
There's also "adaptive clothing" that can make it much easier to get him dressed and undressed:
http://alzheimers.boomja.com/C...7s-Patients-384.html
As for getting help, gosh, yes, you need to -- you can't do this all by yourself. Talk with your local chapter of the Alz Assoc:
http://www.alz.org/apps/findus.asp
and your Area Agency on Aging:
http://www.aoa.gov/AoARoot/AoA...s/find_agencies.aspx
to find out what support programs and services are available where you live.
There may be a number of financial assistance programs you could tap into, to help pay for your husband's care. There are some tools and helpful articles on how to find the programs for which you are eligible at:
http://alzheimers.boomja.com/F...ssistance-27304.html
If you or he ever served in the armed forces, don't overlook veteran's programs such as Aid & Attendance:
http://alzheimers.boomja.com/V...-Programs-49965.html
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Originally posted by: Cheryle Gardiner
Oh, kmam, I'm sorry! You're so young to be going through this. I hope you're able to get away sometimes, although I know it's not the same as having your wife with you.
Jim and I have been retired long enough that we were able to do some traveling before his strokes, but we had plans to do more. It's really true that we shouldn't wait till we're old to do the things we want to do.
I hope today is good for you.
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Originally posted by: Mimi S.
Hello, Juneann,
Welcome to our world. We're so glad you found us. This is a great place for support.
And you do need support. You do need help in finding caregivers who can come and give you some relief. Do call the Aging office and your local Alz. chapter using the numbers JAB gave.
You do need to take care of yourself, first.
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