My elder care lawyer told me it would be "very difficult" to divorce DH in his condition. She did not think it was necessary. I am in the process of removing his name from assets as well as setting up an asset protection trust for myself. I will private pay out of DH retirement money until it runs out and then he can qualify for medi cal (medicaid in CA) if he needs to. It is possible he can stay in the Mem care facility and not need a nursing home but we'll see. One day at a time. And as for relationships going forward, one date at a time (LOL)
Nikki, Regarding your statement - "The key I think, would be to find someone who loves you enough, to understand your situation. Married by law, windowed in heart. One who would understand your dear spouse MUST always come first. I think you CAN still love your AD spouse, and still find another love."
I think this is why so many men and women who are "widowed in heart" end up in relationships with members of their support group. They are the only ones who can truly understand what each is going through.
Joan, that makes perfect sense to me. Kindred spirits who truly understand.
IMHO, I think one can find happiness and even true love again. Maybe that is my niave eternal hope? I As for being a care giver again?? Surly, this is what prenups are meant for! :). I can hear my vows now......
"In sickness and in health. But, NOT Alzheimer's!!! If you get AD, go directly to nursing home, do not pass go , do not collect 200 dollars. LOL
As I mentioned in the Washington DC blogs, we got to see a preview of the HBO special that is coming out in May. In one of the clips, a husband said that he could NOT IMAGINE, being a spousal caregiver to a husband or wife whom you had not loved deeply and unconditionally for many, many years. He said it's just too difficult a task.
Most of us have loved our spouses for decades, and the AD journey is still a monumental task. It tears us apart emotionally, physically, and mentally. So yes, I can imagine having a companion when this is all over. I cannot even rule out having a companion if my husband is in a nursing home for years and doesn't know me. But marriage again? I highly doubt it. By the time I would be ready to "date" again, any man who would have any interest in me would be in his 70's - too much risk of AD. I cannot do this again.
Before I ever married, a woman I worked with gave me this advice. Always marry a man who loves you more than you love him. At the time, I thought it was pecular but as the years have passed, I understood it more and more. Companions are important but I have a sister that's been divorced twice and she insists that we will grow old together but not before we've lived. That's what I'm looking forward to.
I'm 54, my husband is 80.....I've been married to him most of my adult life and I had a previous marriage partner. All I have known is being nurturing wife and mother. YES! When this is over, bad as I may seem, I will be open to another relationship! BUT, I want to be the one nurtured. I want to go places still. I want someone to work side by side with me, I want someone with friends and finally have a normal life. My mother and father are still alive and they told me at Easter that their dream is to see me happy before they die. May it be so.
StuntGirl....It is up to you to make your parents dream come true. I have a daughter almost your age and she has had a lot of problems in the past. I know how hard it is on parents to see their children suffer and not be able to help them find their way. She finally decided to forget the past and start a new life. She is now liking herself and loving life. You can do it to. You have so many years ahead of you and I am praying that they will be good years. Love you
StuntGirl, I wish I could volunteer my soon-to-be 53 year old (and hardly ever been kissed) mental health counselor son for your next relationship, but I'm afraid he's a confirmed bachelor by now. But it's wonderful to hear you at least talking about looking forward to a "normal" life later on! Big hugs.....
I've been thinking about this forum for days as it disturbed me quite a bit afer reading it. Years ago I wondered if my DH could have taken care of me if the roles were reversed. The answer was easy - not very well but he would try. There are times for all of us I am sure in which we want to give up. I remember wanting to run away from it all many times. For me, I can only say that regardless of what we are both going through and all of my frustrations and needs, we are still married (in sickness and in health). No one promised me that we would be healthy. I hope that if the roles were reversed my HD would take care of me as best he could because he said he would. As I said before, this is my opinion and my life so I can't speak for anyone else. I depend on God each day to get us through this. Life is not easy and it is not supposed to be.
A piece of paper, a ceremony, a vow does not a 'marriage' make, except legally. And until recent times, people did not marry for love. There were all those marriage brokers, doweries, arrangements, contracts, bartering--and it still goes on in many cultures--little girls being married off. We live in a very romantic time, not always realistic, but it was what I knew, what I wanted. But what happens to all that love, all those physical and emotional parts of us when it's all one-sided--except occasionally, maybe, a sweet smile in return. Oh, I don't have the answers, just something I mulled around like the others. Before it happened to me, I knew of people who led a double life because of illness, I found it hard to envision, especially when they were still so attached to their sick spouse, but there it was. No one was more faithful than I, but AD destroyed my marriage, like fire through a wheat field. I didn't cause it, I was helpless to fight it, although I certainly tried, and then I understood those who found a life with someone else.
You have described my life perfectly with your words.................."AD destroyed my marriage, like fire through a wheat field. I didn't cause it, I was helpless to fight it, although I certainly tried...."
You people blow me away! And I thought I was the only one in the world with this pain. My W does not have AD, but dementia brought on by a malignant brain tumor excised + 6 weeks of radiation 26 years ago. At first, she just walked and talked like a drunk, but since seizures began 5 years ago, she is now wheelchair-bound, and can be understood only about 90% of the time. I change her pants 4-5 times a day, bathe her, and feed her, which is my destiny until I no longer have the strength. I miss my soul-mate (she doesn't think I am her H) of 46 years, and totally understand all that y'all have said. God bless us, every one!
welcome texasjoe! i assume you are in the great state of tx:) me too. central part. there are others here who have dementia 'driven events' meaning brought on by other factors - starling , kitty, some others. you will find alot of handson advice and info on the topics and on joans front page. its not an easy life being a caregiver and heres hoping your being a new member here will add some knowledge and help. divvi/TX!
Yes, Brindle, if someone has a malignant brain tumor as TX Joe described, they feel the same way. If she'd had breast cancer, not brain cancer, the marriage would still be intact and it would be a much different story.
brindle, in most cases probably not. Terminal cancer doesn't last as much as a decade, for one thing. For another, in most cases the patient is still interacting with their spouse in much the same way they always did except for the grief they both feel. In some cases it brings them closer together.
texasjoe, Although this place is called the Alzheimer's Spouse, a lot of us are dealing with other dementias. The one you are dealing with is unusual to the point of being weird, but the results seem to be much the same.
My mother-in-law died at 92 with an AD diagnosis, but the only symptoms she had were no memory, no appetite, and very, very tired. She just didn't eat much the last few days, then went to sleep one night and never woke up (the home did recognize the need for hospice care, so she did have that, who called us the day before she died). My point is, my bride probably inheirited that tendency, and has just gotten to the dementia stage earlier due to the brain damage suffered earlier by surgery, radiation, and subsequent seizures (she's been on Dilantin for 5 years now with no more episodes). She does the unloading and loading of her purse over and over again sometimes for seems like an hour or more, and occasionally asks whose house this is, and am I married. I could write a book about other weird behaviors, but at least there is no really bad behavior present at this point. So there it is. Thanks for the welcome!
A lot of us whose spouses have been diagnosed with Alz. or FTD or EOAD oR LBD or whatever - see the same kind of obsessive-compulsive behavior you're describing, over and over. And not recognizing their spouse, that's a classic. If you haven't, go down the front page on the left and download and read the "Understanding the Dementia Experience" article. it's long but you'll really find it useful to understand. It's a question of brains being damaged, basically, some in one way, some in another.
Thanks you guys. Why did this have to happen to us? Especially those of us who do not have the strength of independence. Some people can live alone and be happy....and I don't mean a recluse or hermit. They can be extroverts but happy to live alone. Not ME. I have never lived alone. From parents to college dorms to apartments with other roommates (male, of course). Then I found my soul-mate and thought I had my needed backup for life. I looked forward to retiring and chasing her, naked, around the house all day. Well, so much for that fantasy. Now I live alone without any help, responsible for the total care of someone I love dearly, but can't talk with, walk with, or love with, who thinks I am some nice man who takes care of her. How do you fill the void? And dont tell me to get a hobby! Its just not fair (and yes, I know nobody said life was fair).
TexasJoe-like you I never lived alone-college to being married for 50 years. The void, lonliness, sadness and sometimes anger and bitterness will always be with you. My computer is my salvation and that is a pretty poor substitute for the future I worked for that will never be. You've got us to vent to. Sorry-but that's it.
TexasJoe, i hear what you are saying , I to never lived alone i went right from mother to husband, i thought I was going to live my retired life with dh in Az. well that will never happen was looking forward to never shoveing snow again walking outside when we wanted, and yes even chasing each other around naked and hoping in the hot tub, dang do I miss doing husband and wife things it just is not fair. i miss our talks and our squabbles once in awhile, hand holding and hugs and yes the sex. I don`t have him at home anymore doesn`t mean i don`t think of him all the time, it is easier to go and visit now enjoyed our visits on Sat and Sun didn`t yell and knew who i was.
marygail, Glad you had a good visit Sat. & Sun. Isn't knowing who you were rare, or does it happen often?
I know what you mean, holding hands to sex. We always went to sleep holding hands, and would squeeze them once in a while. It was the time I woke up, squeezed her hand and never got a response for some time, that I knew something was wrong. She was having a seizure, ended up in the hosp. 8 days, then a NH for 3 months. The only good thing about that visit was that some Dallas Cowboy cheerleaders were visiting patients one day. Otherwise it was a horrible time. I thought I was going to lose her, but she made it home and got better for a while.
Joe, since the "stages" says that at some stage "they no longer know who you are"... when you first read this you think that's a permanent state. Flipped the page over one night and the next day they didn't recognize you. I don't think it's happened that way for any of us; there's some old thread about this. What happens is that sometimes, usually first thing in the morning or at night, they don't recognize us - don't know our name, think we're their mom or dad, or some nice caretaker. Other days they do. Sometimes, it's true, some take us for the Devil or someone who scares them, but my impression is that's not nearly as common as the basic vagueness or confusion. They don't know THEIR names sometimes, too, or our names. I just asked my husband, to test, what his name and my names were and where we lived. He got everything perfectly - a couple of weeks ago he couldn't - and all the way down to "what COUNTRY do we live in " and he couldn't do that!!
to answer your question some days he knows who i am other times he calls me by someone elses name i asked him one time what is my name, said Mrs Kirkish, she is passed and was a friend of ours and his mothers. he forgets all the grandkids names but know they are his grandkids and still knows his childrens names but sometimes gives the name to the wrong kid, still knows who he is. now last week he said he lost his horse, never owned one, hates horses, he fell in horse poop when he was martching with the school band being a teen, we all just looked at each other and said ok?
I have not posted or even come here because of the pain I feel for myself and all my AD family here. I go through the motions of being a wife. I visit my DH in the NH every few days but it is so emotionally draining. My DH still knows me and begs to come home. It is so hard to be upbeat everytime I visit because I must be perky and find nice things to say and do when all I want to do is cry and run away. I go in his room and he is always sleeping. I try to coax him out of bed to go to the simulus classes but when we get there he is disruptive by saying lets leave but I tell him that I am having a good time with the residents in the class and would wish he would participate but he only wants to go to his room and sleep. I tried all different ways to encourage him to attend but when I am not there he is always in bed. I feel guilty that I cannot be there all day everyday but it is so exhausting and draining that I cannot do it. Guilt trips by the hundreds. I do like the NH and they do their best to involve him in activities but there is such a thing as patient rights and they can't make him join in. Yesterday was horrible we needed to sign new wills because of Medicaid and not being able to have assets even being a beneficiary to me. Changing the house to just my name so in the event of me dying before him that the NH does not get the house. Our attorney saw that after a few times trying to explain why my DH had to sign stuff that he could not grasp was upsetting to all concerned and we had to make a date for some other stuff to be done since it was so stressful to DH. Am I married you ask, well it all depends. Decisions, household things, loneliness, comfortlessness just to mention a few makes me say no. However I have a man that I made a committment to 35 years ago for better or worse and I am honoring it to the end so then the answer is yes. I have a new puppy, grandchildren, Red Hat Sisters and other family and friends and try to keep my mind occupied so as not to get into deep bouts of depression but there it goes rearing it's ugly head when you let your guard down for just a split second. The ugly list just gets longer and longer goes on day after day. Ok God this day is almost over so I must rest to meet tomorrows challenges. I pray for an end for all of our misery and heartache and hope for the future for all of us and that we find the strength for another day. Prayers, Hugs and Hope for all who need them.
Jenene, so sorry for all you are going through now. We all have so many decisions to make. I would like to recommend you have your Dr. prescribe and anti-depressent and nerve pills for you if you don't already have some. They have been a lifesaver for a lot of us caretakers on the site. I don't think I could have made it without them and this site to vent on.
What kind of new puppy do you have? I love new baby puppies and kitty's. Name? They are so much company but so enjoyable once you get them housebroke and trained (things I was never very good at). Kitty trained her self.
Grandchildren are the greatest. I have 7 and mostly grown now. I miss having a young around.
I hope you have a good night and a better day tomorrow. We are strong. WE WILL MAKE IT> Lois
What a good post yes I will always love my husband very much but I to have to go on with my life.I am 54 and my husband is 68 and he is getting worce he has had AD for five years.We keep talking and crying about where he wants to go its about 9 miles from our house.Because I am a manager and I work full time I have been getting all my ducks in order but when the time comes this summer,I will be hurting letting go of him.He has been a wonderfull man and with this desiese yet he is very sweet I love him dearly but I have got to go on.
Jenene, it was good to hear from you. I'm so sorry for all you are going through right now. There are several others here that are at the same place as well. You have to take care of yourself. I agree with Lois..meds are our friend.
dmisey, I'm sorry that the time has come for your husband to go to a home. (((HUGS)))) We're all going to be there one day - some sooner than later. We are here for each other with support, love and hugs. As you said, we have got to go on.
To answer the main question, yes, I am married. Unless legally divorced, we all are married. We may not have the marriage and all that goes with it any more, but we are married (me, in my heart until death us do part) and will stay that way as long as there is breath in his body. I love the man I married and will be there for him, even though he can't be there for me.
Thank you Lois we all know what has to be done but it is the nature of the beast that lives in our LO
I have a Pitbull and she was born on Feb 11. I have had to bottle feed her since her mama said I can't deal with 10 puppies hanging on me and she walked away without so much as a look back. Her name is Shotzie. She sure is a handfull and take her to the NH where she is so loved by everyone there. I want to do my part to take away the stigma attached to the breed Pitbull by showing how with love and nurturing that they are not all mean fighting vicious animals. Thank you again for the kind words and I do come here from time to time just to check the goings on but do not post as much as I once did. I guess I am resigned but still hurting as much.