Yes, I'm feeling sorry for myself. No, this is not depression. Depression is a level of sadness that has no real basis in fact. I'm in mourning not just for my husband, but also for my own life. This is certainly not the retirement I expected to have.
It isn't only the lack of travel, which I took for granted we would do once both of us had stopped working and we could go places at will. It is the almost total lack of human contact in my life. It is not being able to go to the library alone (he has always hated the library) without there being repercussions. It is the fact that the only person I spoke to yesterday face to face was the woman at the check out at the new used bookstore.
And I paid for it. He was very angry with me for most of the day and that didn't finally end until it was almost time for supper.
Starling, AD is the most isolating of all the diseases that I can think of.....people seem to drop off the face of the earth...and I can understand why, it is not comfortable to be around someone who is repeating him or herself all the time or is acting strangely. But, that being said, you must also make sure that the disease does not take two victims. You need and deserve to preserve your own life and sanity and it isn't easy.
Is your husband on any kind of medication to even out his mood? Are you? Have you considered a day program? Can you hire a "friend" to take your husband places so that you can have some free time?
I do know what you are feeling...I was in your shoes about 10 years ago. First I hired an agency to come in twice a week to sit with him while I got out of the house. Then I enrolled him in a day care program five days a week....I felt like I could breathe again....Of course, I had to have him medicated so that he wouldn't argue, hit, or push caregivers, but at that point, it was that or I might have killed him.
Now that he is gone, I have no regrets over anything I did, said or thought....for me, I was in survival mode.
Wish I had a magic wand to make everything better.....hugs.....
There is nothing wrong with crying. We all do it, probably not often enough. Everything you are feeling and experiencing is "normal" for an AD spouse. Check out the previos blog section on the left side of the website - #7Sadness; #12Mourning the relationship; #16Loneliness; and #64Sometimes all you can do is cry. (I'm still feeling the effects of some major technical difficulties, so not all of the pictures match the words - I'll work on fixing that when I get home). Also, at the top of the Message Boards, hit search and type in 'sadness'. There is a whole discussion on it.
It is essential that you get some time for yourself to pursue your own interests and friends, because, realistically, whether we like it or not, that is the direction in which we are heading. We need to cultivate a life for ourselves.
Starling, I think all of us can understand your feelings. It is extremely lonely. Yesterday was the first time in so long that my DH was ok to stay home and let me have two hours wandering around. I can't believe how good that felt. Even so, after an hour I started worrying that he might be out looking for me and actually came back early - thankfully, all was well. BUT, I know those days are numbered. I really don't know when it becomes all right to have someone 'babysit'. My DH would figure that out and right now I know it wouldn't work. One time it was suggested we go to a Senior Center, and that turned out depressing to both of us, so we've not done that again. Frankly, my best friends are now those I've met through this site. This helps me not feel so lonely. It is here 24/7 and just reading past discussions is like having a connection with those who understand. This morning we ate breakfast that comes free with where we are staying. I think everyone is listening while my DH talks about the pictures on the walls, asks me who did the art, why would they have that type of art and I just feel like leaving. This is a sad disease no matter how you look at it. This is my second spouse to be dying in what I expected to be retirement living- doesn't seem fair, but I love him and just have to deal someway. Love to you...
Starling I feel the same as you do. Some days I feel like the world is just passing me by. My dh would never go to day care but I now have a lady that come 2 days a week for 4 hours each day and lets me get out,that helps so much. Home health also comes 3 days per week and while they are here I wander around the yard or just sit and relax. There are still times that I feel like the world has forsaken me and I just cry and like Joann said its okay to cry as much as you need to, and its okay to feel sorry for yourself we didn't ask for this burden it just got handed to us.Good luck and GOD BLESS
I agree with all of you. This is not the retirement we planned. You women are "fortunate" in one way. Men are not supposed to cry, but there are times I do.
Last summer, when our daughter talked us into moving into a retirement facility, I thought it was so we would have access to immediate care in case of an emergency. I have found that it also gives me people to talk to. Yesterday my wife and I went to get the mail. There were 3-4 people sitting in the lounge area, so we joined them for a cup of coffee. We ended up having free-ranging discussions - politics, religion, weather, etc. - for over an hour. It really felt good to have such an opportunity. My wife just sat there and listened, occasionally making a comment.
Like Sandi, my DH is gone now (but for some of us, AD lingers & we stay on sites like this). I also have no regrets, I was in survival mode and, oddly, I'd do it again if things were the same. I made lots of mistakes, but that's part of being human. And I cried--buckets & buckets of tears. How can you not cry--male or female? It's good to cry, it cleanses your system, relieves tension--and you've earned it. If you can't cry now, when can you?
My very percaeptive daughter used to say, "Mom, you're living in limbo." She was right and I knew it. And I mourned for losing the life we'd built together, for his disappearance before my eyes, his fear, his getting the spider on the bathroom ceiling, our golden years together. It's massive. Fortunately I am a bit of a loner, but I still felt restricted. Once or twice our son stayed w/him for a day or two & I'd go away. I felt like I'd been let out of prison. Day care also worked for us.
So my dear Starling--I can only tell you that we all understand your feelings, even those unspoken. Thank God for computers & these web sites, because no one else knows. Your feelings came thru clearly, it is unbearably sad and all but impossible to accept. But you'll be OK because you know how you feel and why--it's OK to be sad.
Starling, And I thought I was the only one who was lonely. My DH is extremely hard of hearing compounded with having a word recognition of much less than 50%, then throw in AD and there is no such thing as a decent conversation. He is beginning to become possessive and suspicious of me. This is scary for me. He is happy-go-lucky most of the time.
If it were not for my job and the people I work with and therefore can converse with, I think I'd lose my mind. Well, sometimes I think I'm losing my mind anyway.
I read everything all of you said, and it is good to know I'm not alone. I'm sorry that I'm not alone because I feel bad that anyone else is going through this with me.
sthetford, my husband should be wearing two hearing aids, and is aphasia is the worst part of his disease. It truly is worse than any other piece of it and puts him into a higher stage than he otherwise would be in. He won't wear the hearing aids. He insists he is "not deaf." His refusal to admit he needs hearing aids just makes the entire thing harder.
I'm not sure if it is the pacing or the following me around that is worse. Both have gotten worse in the last few months. I've started logging things he is doing because I can't remember if he was pacing in December or not.
Up until this past week, I have not been out of the house without my husband in probably three years. I would put him in his wheelchair and then trasfer him into the car, then out again, in again and out again when we get home. Not much relaxation in my time out.
Last week was the first volunteer from hospice that allowed me to get out alone.
I have only been out of the house six times since DH got out of the hospital the first part of Jan. Those times he was with me. Did you know there are still people walking around in the outside world?
"Did you know there are still people walking around in the outside world?"
I grinned. Actually today I do. My daughter came to visit with my grandson. My husband is still OK to be alone, he just doesn't like it. And we decided that the two of them could be home together today. I got out of the house without him twice this weekend. On Saturday with my grandson, and today with just my daughter. My SIL was working this weekend and wasn't able to come, but maybe next time will work out better. He is a great guy and my husband misses him.
joyce do take care of yourself. I'm trying to do the same.
Starling, I'm doing just that. Tomorrow I am taking my husband to a 5 day respite care. I'll be going to our home in Northern Michigan and spend a couple of days there. This will be my first experience with respite care so I'm a little leary, but I do need the time away from all this.
Joyce 43 – I loved it when you said, “Did you know there are still people walking around in the outside world?” No, I think I had just about forgotten that. Seriously, I do forget what normal life used to be like.
This week I was finally able to go for the first time to a department store that opened near our home—only three miles away—last October. It was like a trip to Disneyland! I hadn’t been anywhere except the grocery store, Wal Mart, or a doctor’s office in so long that I forgot what the rest of the world looked like. Everybody else around me seemed to take the store for granted, but I was so glad to be there that I wanted to dance in the aisles! Guess that means I need to get out a little more, doesn’t it?
I do worry about how in the world I’m ever supposed to be a normal person again after this is all over. After five years of dealing with AD, I’ve pretty much forgotten how to be “me”, or at least the “me” I used to be. And even though my life with my husband isn’t the life it used to be, he is still somewhat my anchor, in that everything I do revolves around him and what he needs. I don’t know what I’ll do when I lose that anchor. I don’t know if there will be enough of me left to continue on by myself.
"I don’t know if there will be enough of me left to continue on by myself."
I'm only at the start of this journey and I already know that the person I was, and even the person I am now, is not going to be the person I will be at the end of the journey. Some of that is good. I will have grown stronger. Some of it is not so good. There are interests that will die because the window of opportunity has closed. That is what happened when my own physical problems made doing a lot of the things I had loved impossible. I turned so much of what I had been off. And that will happen again.
It is very possible that I will forget HOW to be with other people except online. It has very nearly already happened.
I am on the beginning of MCI with my LO who isvery high functioning 99% of the time. He has little insight & discussions about real FACTS are not possible. I have so much of him to enjoy, but I feel a sadness and a mourning as the husband that I knew has already started to leave me. We act like polite strangers on a good day.Other days aren't so good.Our lives have changed drastically. No more travelling - he gets in a bad mood with me in an instant and it lasts the whole trip, or he wants to jump out of the car on the highway, or scream at me about whatever when I am driving us to our "vacation". So no more of that. I sleep in my little computer room. He tells me that he doesn't want me around, to stay away from him - among other hurtful things. He is a physically robust man, but there are things he just won't do around the house, and I have to do them - things he did before. He'll do it later he says, but of course he forgets.He doesn't like to watch tv. He brags about loving to read, but that means sitting in the chair - or bed with the book in his lap, while he sleeps. Our life is the grocery store, Home Depot and Lowes, church and a meal out after church. We talk about the weather, politics, what needs to be done around the house,etc. all of which he forgets. We don't do anything with other couples as he likes to dominate the conversation, tell everyone what to do, tells them why they should agreee with his politics and makes up things that aren't true about us. It is embarrassing. Even if we were to have a discussion of any depth, he would forget it two minutes later. We used to be very close, loving, touching. I feel guilty as so many others have to physically take care of their LO, and here I am whining about something so minor - but it is the start of a voyage where he is on the ship that is leaving the dock and I have to stand and see him move farther and farther away - and act like it isn't happening and that I like it. Thanks for sharing.
fath&hope, you said everything I would have said if I had described what has been going on in my life. I've given up the last of the socializing for the same reasons you have. And I'm experiencing the same kinds of things you are.
If you read the entire thead you know that neither of us is alone. Venting on this thread helped me. If nothing else I had spoken the truth of my situation. I hope it helped the others who joined us on this thread too.
Faith&Hope - My DH also has MCI and I can soooo relate to many of the things you have written. I got an apartment which is my sanctuary while I'm on this journey. Yes he only goes to the corner store and to get him to go to new places is a struggle. The arguments....no lets call it what it is .... the fighting and name calling on his part and then act as if he has done nothing wrong, I don't know how much of this I can take. The dominating of conversations and always talking about his time in the military and the things he did? I'm not sure how much is real or imaginary.
Reading your posts each of them i can relate to as well. in earlier yrs the dominating of conversations and making up stories, talking loudly in restaurants and feeling as though everyone was listening,the isolation thru loss of friends/family..been there to all of it. even now the isolation is overwhelming and like you getting out to a mall where the world still functions without AD and people interact with intelligent conversation further reminds me of how out of touch we become with the real world. our world is now cyber friends( a godsend)- drs- hospitals-daycares or agency workers-plus anyone who can lend a hand to give us a few hours to ourselves to establish contact with humanity. lately i think its time to place my husband in an AD facility then i see some astonishing encouragement that he is still the man i love and guilt sets in for even thinking of it. we seem to live in a parallel world full of loniness and sad times with temporary bursts of light to see us thru these awful times. my best to each of you during this journey. Divvi
Thank all of you for your validation - I know it but sometimes I just get filled up. I like the term "parallel" - it is so appropriate. I wish I could afford another place as a refuge. I am still doing some creative thinking in that area. God bless all of you. Thank you.
faith&hope - What you describe doesn't sound as if you DH is high functioning 99% of the time. It's fine to be honest in this group - no stiff upper lips here!
My husband has passed through early angry, mood swings. He is 62 now but he started with the signs of early onset when he was perhaps 55. I feel like I live with an adolescent boy. Silly, and repetitive jokes and lots of repetitive vocalizations. He gets something from TV in his head and it is repeated for days. I try to remember to be glad that he still has the capacity for some conversation and that he is in a good good and I should be thankful. But sometimes it isn't easy. I would love to have a real conversation. My heart does go out to those of you who are suffering thru anger and hostility.This is truly a cruel disease.
This is such a relief to find you all going through the same emotions as I am. Added to the mix is my husband's first family hostility and aggression towards me. There was no sign of them until he was hospitalized about 8 months ago, and then they were there with hands outstretched. They are making duck soup out of him and have managed to convince him I am his enemy (we've been married 28 years; his first wife and he were married 14 and divorced because she had affairs), have him revoke my POA and Health Care Agreement, took him to the bank and empty the bank account, leaving me with $32,000.00 worth of bounced cheques ( we had expensive masonry required on our ancient house). Now a neighbor who visited him at the Intermediate Care wing of a private hospital reports that my husband has said he is helping out his ex-wife "mother of my children" financially, so "that she can stay in her little house." I have a lawyer, but at age 78 (my husband's 88) never thought I'd take care of him for 5 years of Alzheimer's and then have this on top of it. (By the way, I see that I've used mary75 as my name and realize I'm using my University student I.D. that I took out when I was 75.) I'm filled with anger, and there seems to be no end to all of the nonsense. Thanks for letting me vent it here to people who know how lonely and sad it is without all this on top of it. Mary
Mary 75, Can't you get an attorney and take his children to court and show that with AD, he isn't mentally capable of revoking the POA; and regain control of your spouse? You are legally married to him, and he isn't capable of making these decisions. After 28 years, you definitely have rights that you need to fight for! It makes me angry and sad just thinking about your situation!
I'd had his mental capabilities assessed by a geriatrist at the end of January, and the report was that he was not capable of making financial decisions, but he could make personal ones. My lawyer said that the court could view the transfer of his funds to another bank (his kids took him there to do that) and the revoking of my POA as "personal decisions." I have since found out that his kids took him to a new lawyer, said that our marriage had broken down, and that he needed POA representation. So we have a case being developed to take to court, and this latest about the financial support for his ex-wife may be just the thing we need to act. Mary
To Mary75. My little problems of having a child-like husband pale in comparison to the pain you are experiencing.My heart goes out to you. NO one should have to fight family at the same time they are fighting this disease. It's as if his children are trying to erase your life with him ... how cruel... if I had to guess I would say that they expect to get money out of this... Anyway, you have rights....please do fight for them. No one should be able to cheat you out of your place in your husbands life. My thoughts are with you!
Personally I'd file for divorce and ask for half of his assets. I'd be willing to live in a one-room apartment to get away for the evil you are being put through.
Laurie, you're right. There is a lot of money involved. My husband's will leaves each of his three children 1/4 of his assets, and 1/4 to me. But his kids (ages 44, 50, 51) don't want to wait. They want the use of his summer place now (and have the keys). and they want the money now. I'm hoping to hear from my lawyer today to get rolling on this, especially with the ex-wife now being gifted. So I do intend to fight them. My husband is in good physical health and could live for years. I want him to have the best of care, but that means his assets must not be tampered with, as I believe they are now by his first family. Cruel is a good word to describe the actions taken by them. But if it becomes necessary, I will go the route of asking for a legal separation. Then I would receive spousal support, which I'm not getting now, having no access to his bank account, and I will ask for reimbursement for the $32,000.00 I had to pay when his cheques bounced. I need to survive. The anger I feel is stupendous. Will use it as rocket fuel to continue. Mary
Mary , my heart breaks for you having to deal with spouse with AD along with greedy kids. i myself can relate greatly as i am in the SAME boat with 3 greedy adult kids who havent been to see their dad in 10yrs except for when they have xmas/bday or such when a gitt is expected. not once have any of them come by or asked to take him to lunch or even out for takeout. the last time i had to call his only daughter for help to come sit for 2hrs in hospital so i could go home for clothes and feed dogs. here too is a healthy estate so FAR but likeyou that will change when nursing home or 24hr care is needed. my husband's left me 50% and 50% divided among three. its all about money at this point and since dad is mental and i control the purse strings at this point they arent concerned with their dad at all. i vowed to make them pay dearly for their neglect and will do what it takes to preserve his care in tact as well. my best to you, Divvi
What is it with kids ... ? My husband has four adult children who hadn't seen or communicated with him in years, except to ask for money, money, and more money. When he became too sick to work any more and the flow of money stopped, they stopped communicating with him entirely -- after blasting him with THE most disgusting emails full of threats and complaints that he wasn't really sick, he just was too stingy to help them out. (Fortunately, I managed to intercept the emails, so he never saw them.)
When I petitioned for conservatorship, they came out of the woodwork again, trying to block the petition with all sorts of lies. Fortunately, the court understood what was going on. But the stress of having to deal with their cruelty (and yes, that is indeed the word for it) and greed, on top of the stress of the AD itself, it's enough to make you go mental yourself.
frand I say he is functioning 99% of the time because no one else sees his "stuff" but me. I feel I need to give him 1% to be fair. But what I really feel is that he doesn't just have MCI, he has AD - but I can only say that here. Even his neurologist asked if it would help if we went to marital therapy. He is very good at deceiving other people. He tells his stories better than I tell the truth and they believe him because he is such a jovial person - laughs at everything even when it isn't funny. That is new behavior, but everyone else loves it. I think it is a defense mechanism. You can tell I have some pent up energy about this.
Hi all! I haven't been on here in awhile and just reading this one topic made me feel so at home ,cry and want to hug you all! Little bits and pieces in each and every message made me think yes, that and that, and oh that too!! Starling, we will be your friends here and understand perfectly each and every thing you feel. I don't go through the crying quite as much as I did at first (thanks to meds) and acceptance which it took me a long time to grasp or care to! I talked with some where I go to church and we started a support group there since there is not one in our community and it has helped me MOST! I understand the shopping situations, the unwanted retirement plan we now have , the blame game which I am the one at fault also! I too miss the friendships. I had to leave work to become a full time caregiver almost a yr ago now. I hardly ever hear from anyone, including OUR grown daughters. They tell me they feel they lost their mom too, but I can't talk without him right under me , so I have to email them. They only come for a special occasion when they come and eat, short visit and they are on their way till the next holiday! I have one grandson and now I am the BAD grandma who doesn't do grandparent things with him (he's 7) which I already regret but cant fix, and I get disappointed that I am doing this without their help. They tell me, just call them, but they don't offer. If I call, they already have something to do and one says she can't handle just staying with him anymore- she did twice, so it is stressful on all sides!! We went shopping today and all I heard was how the dog was lonely at home and blowing and huffing. Then we went out to eat before coming home, and he cant unroll the silverware, had to tell him to use the spoon, slurps his food (chicken and dumplings) and puts the whole hunk of chicken up to his mouth and bites off it and then splash into his bowl, but noooo he can handle it. Things that make you get unsocial!! Then he wants to talk to folks in stores but say some things that make no sense, or will call me in to bail his conversation out IF I can figure it out. Often wants to give out our phone number to strangers... go home and then when you get home, asks me is there anywhere we can go???? I'm so sick of looking at dirty undershorts , but he calls me in everytime to look! But diapers, no he is NOT an infant!! AND DON'T get a babysitter, I don't need one, so no respite for me- any suggestions on how to get someone to sit under those circumstances?? He had a sister who treated him like Mary's family , and would take him to the cleaners if she thought she could get away with it! Mary, I feel for you hun, and sure hope you can get things straight. Thanks for listening to me vent too, and God bless us all!!!!