I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. Is anyone else having the same feelings as me? Having a tough time of it? How have you dealt with it? Have you dealt with it?
It's like living in the "Outer Limits" remember the TV show, a particular eposide where this couple was stuck between the past and future. They could see a pending accident ready to happen and had to something in their realm to avoid distruction (an accident to happen to there child). That's what I feel like this life is, the past being what ever it is for us all, the future distruction that we must survive and go forward. We are in the in between limbo realm. This morning listening to the radio the song "The Dance" came on and it made me cry all the way to work. And I ask myself would I miss the Dance if I knew then what I know now. Most likely not, Joan my husband sounds just like your Sid, he's in the same place you described and your advice to prepare before you need to is outstanding advice and I remind myself of those things I need to do, daily. Finding help and care the most difficult task at the moment for me. Joan continue to knit your beautiful scarfs and do all the things you are doing outside of our Alz life. I have know answers just a constitution the allows me to press on......... and somedays are better than others.
Oh Joan. I have one friend that told me the other day to just put Tom in a facility, divorce him and get on with my life. She's not yet 40 and extremely selfish. I had no comeback for her because I was so stunned at her suggestion. I, like you, don't feel right about going places without Tom. I know he enjoys going to movies (altho he doesn't understand them), out to eat (I have to order for him because he can't make up his mind), ball games (he thinks they changed the rules in all sports)....but sometimes going to these things and doing things other couples do makes the confusion so much worse when we get home. I don't want to go alone. We are on a waiting list for Independent Living. I can hardly wait. I'll have access to so much more...like your knitting class. I crave real conversation...I want to ask questions and get answers that make sense. I want alot but my time will come. Right now I am here for Tom.
Joan--I don't think building a new life is any more difficult for us than it is for non-AD spouses when a cherished partner is lost. My sister-in-law lost her husband of 50 years suddenly in February 2011 in an accident, and she hasn't progressed at all in terms of rebuilding her life. At least we have years of advance warning, and although our workload is tremendous during those years, we are able to slowly and gradually maintain or develop some new activities on our own if we want to, as time permits. Losing your spouse is tough, regardless of what caused the loss.
I think it is more difficult for us because we are doing it while our spouses are still alive. It's a constant push/pull kind of thing. I need to step into the new world; no, I need to be in my spouse's world; how can I do this while he is still here; I need my own life; maybe I should wait until he is really dead; back and forth. That's just the way I look at it - my opinion only. When they're dead, they're dead. There is no going back and forth, and we either go forward eventually or stay stuck forever.
Well, I agree in that one area--dating--it is more clear cut if the spouse has already passed. I haven't had the emotional struggle you described; after 6 1/2 years of caregiving, there's no way I could hold off on building a life--to some degree--until he's gone. I don't see it as mutually exclusive, you can still remain in your spouse's world while also getting some pleasure out of life on your own.
Just one day on my own while Dh was in DC, and I was lost, didn't know what to do with myself...it was like, OMG,I want a life too, how will I go on after he's gone, will I be able to make a life for myself, we did everything together. I sometimes find myself making plans for the after,then pull myself together and think how could I do that! I guess when it's final one will either sink or swim...get on with it, make an effort to get out and about. DC again today, perhaps it will get easier with time.
i cant even fathom a life after sometimes, much less now while hes still alive. my whole world has been built around him for the last 23yrs. 12 yrs of that as caregiver . i have no urgency to make a solitary life for myself at this point out and about trying to jumpstart new friends and activities. the underlying sadness of what will not be still holds me hostage mentally. i am still hoping that after all is said and done that there will still be time to get on with my life and fill it with what makes me content. but i am conscious that this is a choice that i have made for myself personally and resigned to my decisons.
Fill it with what makes me content" Divvi-that sums it up for me. Sometimes it is a simple decision to leave dishes in the sink to accept an unexpected invitation out. Sometimes it is saying NO to something I don't want to do. I find simple joy in knowing I can finally have a say in my destiny.I try to accept what I have and not grieve about what is lost.
"I find simple joy in knowing I can finally have a say in my destiny." I agree. An example--this week I came down with a cold. I can't tell you how many times I've thought--thank goodness DH is living at the ALF and I can deal with this cold and nothing more. What a different slant we have on life after dealing with dementia!
While I agree with Marilyn, that we must do it and that our loss is similar to that of a "regular" widowhood, I believe that the line between placement and not-yet-placed is a substantial dividing line between whether we can move on in any meaningful way or not. As Joan expresses in her blog-post, leaving the spouse at home with caregivers so you can make plans and have a life outside the home can be a giant stumbling block to those of us who for whatever reason are still primarily doing almost all the caring ourselves.
It is for this reason that there is a huge piece of me envying the position of those who have HAD (for whatever reason) to make the placement decision. I am aware that you are, even at that stage, beholden to any crisis at the end of a phone call, but you can still plan on a good chunk of every 24 hours being "yours." More or less, maybe, as if your caregiving was a little like a job from which you could go home. I mean, I know you never really turn your back on it even when placement has occurred. But...man...I'd love to come home and just be off-duty. For now it's me by default, pretty much 24/7, and I really cannot foresee that changing for...a long, long time.
(edit...This thought depresses me, actually. I truly cannot imagine the end to this. Jeff is physically healthy, relatively young, and has the likely to be slow-acting PCA variant. I could be looking at decades. I can't think this way. This is why I HAVE to do zany things like take him on train trips. Otherwise I would go nuts.)
Well, today I turned down a day out with my best friend of over 50 years. I'm sure i upset her, but I just wanted a quiet day to my self while Dh was in his second day at Day Care. It's been a long while to have a day completly to myslef...no shadowing, just me! I just needed to potter around the house doing little things, taking old clothing to the good sammy shop, stuff like that...Going through this nightmare sure has toughened me up some what...I now have learned to say NO. Hopefully it will stand me in good steed when the time comes to make a life for myself.
As you all know in September of last year my wife of over 50 years passed away from this disease. We had been childhood sweethearts and were best friends, lovers, parents and all that goes with it. Always very close and each had the others support. I alone cared for her up until she passed. Putting my life on hold to care for her for a good portion of the 6 years she suffered the effects of this disease. Near the end of her time we shared our pain and our grief. She was quite cogniant up to the last days of her life and was aware that she was failing. After her passing I grieved for her for several weeks and then it hit me that it was time to put away that grief because we had been there done that together and that was not what she wanted for my life. I was not to continue to grieve any longer but to pick myself up and look to God for a new direction for my life alone. I will admit it was very difficult to get up and step away from the life we had shared for all those years but I knew it was what she wanted for me. And if it was the other way around what I would have wanted for her. So the first thing I did was to take a trip south to visit the children, grandchildren and great grandchildren that we had not seen in along time due to the illness and to honor her wishes. When I got home the grief came back and the house closed in and I knew that again she was pushing me to move on. I planned a hunting trip with my son and grandchildren up north to the place where I had lived as a child and it was very rewarding, but as soon as I got home it (the lost feeling)started again. While I had mixed emotions about it I start searching the online dating sites looking to see if there was someone there in the same position as me that I could relate to and I also started going back to church every Sunday. Both have done me a world of good. I have yet to find that special someone but at least I have gotten off dead center and am moving in a forward direction and feel the loss much less. I don't know if this would work for anyone else and can only say that it has helped me. I don't feel like I done anything wrong here because I done everything I could for her while she was alive, but she is gone and is not coming back so I'm faced with this choice, either I continue to finish my life alone or search for someone to share the rest of my life with. I don't know if marriage is in my future or not but I believe that companionship is. IT IS a hard road but because you are dealing with the most difficult of all diseases, but you are strong enough to make the journey. May God Bless You All. Bruce D *
emily--your situation is indeed unique. On the one hand, you will probably have "more" of Jeff present for a considerably longer time than those of us who are dealing with garden-variety dementia (sounds like an oxymoron). If I was in your shoes, I'd do what I think you are already doing, make the most of it (i.e. the train trips). But on the other hand, I think I'd need to balance that with serious breaks of my own, i.e. arranging for respite care and taking, maybe, quarterly trips on my own or with a friend, to get away from caregiving responsibilities. After all, it seems like you need to pace yourself carefully.
Obviously, it is more difficult to maintain outside interests while your LO is still at home. However, I think it's worth the struggle to keep a little bit of your old life going and maintain some of your friendships. By cutting ourselves off completely from the world because of caregiving, we make the whole journey that much harder.
I understand what you mean about circumstances forcing some of us to do placement. My situation turned out to be that way; it got to the point where it was the only sensible decision, after my ignoring the neuro's gentle prodding for some time. It was almost as if the decision was made FOR me by AD, and that was a huge relief in some ways.
emily, I was trying to think of how to word my next post, but then I discovered that I didn’t have to, because you said everything perfectly. I can so relate to what you said about not being able to see an end to this. My DH was dx with early dementia 6 years ago. He went to the neurologist for follow ups for 3 years & then refused to go back. He has steadily declined, but is it AZ or some other form? I don’t know. He is so dependent on me. I can leave him with our daughter or a friend from church for a few hours, but right now I could never leave him anywhere overnight. I have been thinking about this for the past few weeks & I realized that DH & I really don’t have any couples that we did things with or went places with. When our kids were young they were involved in sports & that kept us busy almost year round. Then when they left home we both worked full time & while we did have friends, I now realize that they were really just acquaintances. I guess this sounds kinda sad, but I really don’t have many “outside interests.” Don’t get me wrong, there are things that I would love to do, take keyboard lessons, learn how to make crocheted rugs, & a few other things, but I don’t see that happening until DH goes to daycare. Hopefully that will happen soon, but if he doesn’t want to go I can’t force him. When I signed him up last year they told me that the aides would be able to redirect him & get him involved, but that didn’t happen. He was angry that I “left” him there. I guess the point I am trying to make here is that some of us (or maybe I’m the only one) can’t pursue outside interests until we can either put our LO’s in day care or have them placed.
Not sure it's more of "him," but it is undoubtedly an easier to deal with version of a person than those LO's who are utterly confused about who/where/when. In terms of my being able to relate to him as an adult or partner...that was one of the earliest things to go, but he remains gentle, knows who we are, knows he lives here, and goes along with whatever I say. He just needs help with everything from putting on clothes, to having manageable food, to finding his bed, to walking in a straight line. All the while believing himself to be as normal as he was 10 years ago. He's kind of like a large stuffed animal with actual feeding and bathroom needs whom you have to take everywhere you go.
So, I speak in this despairing tone as if this will go on forever since the unmanageability that often forces caregivers' hands doesn't seem to be on the horizon. Truth is, his visuospatial processing is degenerating apace, and when it's all gone it will be unmanageable and I will have to arrange something. And also, the damage will spread. As if I'm wishing for it. Hmmm, not really...but I guess this is why it's better not to borrow tomorrow's troubles and just do what we can today.
BruceD* thank you for sharing what you have been through since you wife passed. I sounds so much like my brother in law, who was married to my sister that died almost 5 months ago. (Married 35 years)
He says the same thing, he goes out and about, and does well, until he gets home. Christmas was hardest for him and they were married Christmas eve and she loved the season.
And emily, your dh sounds like such a gem. Mine is too, despite the AD of course. Even now, with his symptoms advancing, I can still "see" him, though, I don't think for long.
Joan once again, your honesty is a wonderful thing to see. I know this thread is about the sadness of losing Sid in regular life, but I do want to piggyback here and tell you how happy it makes me that he loves his daycare.
For those whose spouse no longer knows them or recognizes anyone; who is in a facility just existing - getting on might be easier. I don't know. I do think when the spouse is cognizant to the end like Bruce's was and Bob's and Nikki's are, it will/would be much harder.
My husband is in year 4 since diagnosis and is progressing slowly. His sister diagnosed 3 years before him (younger) seems to be progressing faster. At 4 years she had to be moved out of her apartment and into a facility. I wonder if my husband was by himself much like she was except for daycare, would he go faster? My big fear is that he will linger on for 25 years like his dad. I dread that cause I will have no life left. I am one that will be honest - if he can't have a life then I want the disease to take him fast. He is getting close to not having a life - or what I consider a life. His biggest problem is memory loss which means he can't do a whole lot of what he use to. He sits watching TV doing word searches all day unless I get the desire to go do something - which is seldom. He will go if I come up with the ideas.
Charlotte, you are not being selfish and very brave to admit you are afraid that he will live very long and you will both be deprived of a meaningful life. My DH is ending his 3rd year in a facility and going strong. I just hope my money holds out longer than he does. He doesn't know who he is, who I am, where he is, and so on. He is totally incontinent and fights with the staff every morning when they shower him. But he is strong still at least in his body. It is the saddest disease. I have done my best to get on with my life and just take comfort in knowing that he is safe and so am I. I pray that he will not suffer long with this. Hugs to you and thanks for your honesty. When my DH does pass I don't want anyone to console me, or say it's sad, I just want to know that he is in a better place.
Thanks, blue. I've been working a lot now that I don't have to work out caregiving so I didn't get on the site very much. I did some lurking though! I have also been learning French!! I'm up to Level 5 in Rosetta Stone and enjoy it very much. I go to a conversation group once a week with other French speakers. Just to think I couldn't even have a sensible conversation in English with DH! Placement has saved my life.
Maggie - thank you. Sounds exciting to be learning a new language. Many of us took it in high school but do not remember much if any of it. As an adult it is much harder but I hear Rosetta Stone has found a way to make it easier.
Yes, it's immersion and it's visual -- no translations. Works very well. Sometime when I visit DH I say a few things in French to him (he lived in Paris when in college) and he smiles just the same as when I speak English. I guess it sounds the same to him LOL
Last month I would have thought I would never be able to move on but after experiencing violent outbursts and my spouse abusing my mom. My AD doesn't want me to talk to my family even on the phone. They all live thousands of miles away and I cannot even figure how to see my mom, children, and grandchildren. If I take my AD to their house I expose them to these outbursts. He treats them mean if they come here. So I guess I am ready to start finding me a life. I miss my AD and I grieve but this has become unhealthy for me. Before my AD has abused me for 18 years and I am tired, sad, and becoming unhealthy my self.
Oh gracious: All of you speak to my circumstances. As I said previously, my DW went from the psych hospital in Little Rock to a nursing home in Tulsa. She never went to our house again and doesn't even remember it. I sold that house and bought one here that she has never (and will never)seen. I put our furniture and pictures and her stuff in it just as if she was going to get well and come home. It looks like she lives here. In fact, my daughter says that it looks like I made a shrine to her. I even have her lovely clothes hanging in 'her' closet. I might have done this all wrong, but, I have made a lot of mistakes on this journey. When I am in this house by myself (that is the only way I am in this house) I am lonely and I miss her terribly. As difficult as the caregiving was, I often think that I would take her back and do it again.
I realize that I need to make a life without her and I am trying to do just that. I recently went to a wedding in her family and being there without her was almost impossible. In fact, I didn't go to the reception. Her family have been good to include me in their activities and I appreciate that, but, it doesn't change the fact that I am alone for the first time in my life and I am lonesome. We got married when I was 19 and she was 16 and it was good. Always together, but, we had our 58th wedding anniversary recently and she didn't even know it. Wedding anniversaries were always time for a big celebration. Candle light dinners, white table cloths etc. I told her that today is our anniversary and she said thats nice and that was the end of it. First time I had a wedding anniversary by myself. You see, I don't know how to do those kind of things.
I wish I had a little sister so I could have some female companionship. Just go out to dinner and have a conversation.
dean...My heart goes out to you and I understand that it must be very lonely and sad for you. But, from what I hear from some of the male friends whose wives were friends of mine they have women calling them since their wives have died. One very good friend said he finally had to tell several women not to call any more he was not interested. Of course, when he was telling me this, he also spoke just like you do how terrible lonely he is. E It is the women that seem not to have any males calling them.
Male or female it has to be a terrible road to be on. Hugs to you.
Yesterday I had lunch with a long-time friend who lost her husband 3 yrs ago. She cannot move on. I want to shake her and say, "You're not the only widow/er, there's nothing you can tell ME." I left feeling so down that I don't think I want to see her again. I realize that we all grieve in our own way but she is shrinking more and more into herself. Suggesting that she do anything or find male companionship is greeted with horror. Her husband was a good person, I liked him, but she seems to forget the complaints she made about him to me before he died. Now he is elevated to sainthood. For most, nature pushes us along, it's called survival. But she is one of those who fights it. She told me that she now has an 'in your face' attitude about her life, and it is obvious to me that she is comfortable and where she wants to be.
This thread made me look back to the time when the song 'What'll I do?' kept playing over and over in my head, knowing that I'd be alone and the life I wanted and built with DH would be gone. Who would ever again call me to the back yard to see baby hatchlings hiding under the garage eaves, who would give me his last bite of pie, bring me my pink pillow and tease me about my always messy hair? What would I do? I had no idea.
I am elderly and admit that there were times when I thought nothing would be left for me when AD was over. But things have worked out. I just know that I am not like my friend--we're all different--but if I'd made her choices I'd be unable to breathe. In India, widows were expected to jump into their husband's funeral pyre. maybe she would have preferred that.
Betty - your friend sounds like my sister. 4 years and she has not made an effort to move on with living. She seems content to lay in bed day after day only getting up occasionally to go to Costco where she walks ever isle to get her exercise. True, I have not been in her shoes, but it is sad to see her grow old and bitter about life. It is not like they had years together - he had a stroke a couple years into their marriage and it went downhill from there as he gave up and was content to have her wait on him hand and foot. I know the stroke changed her personality for the worst, but still sad to see no effort to live again.
Betty I also really appreciate you post...life after will be what you make it. It can either be good or bad. I will remember your post...He may be gone, but that does not mean you have to go with him..I too will not be jumping on the funeral pyre.
Bettyhere--I had the same experience you described. Heard a friend having a conversation about her recently-departed spouse. For about 45 of their 50 years together, she complained bitterly about him to anyone who would listen. Talked about leaving him repeatedly, but never did. Then he died, and suddenly, I overheard her singing his praises!!! I understand that she wouldn't speak ill of him now, but gosh, this didn't sound like a description of the same person. So she couldn't stand him when he was alive, but now he's a saint. The mind is a strange thing.
We build our lives and rebuild them many times--sometimes easily, sometimes reluctantly-- but always we do it. What I've found is that our best success is when we build with openness, setting the stage for life to move in and fill us up. If we build a closed little room with one door and one window, not much can enter or leave. Some may feel best in such a controlled place. In the past, when I tried to build in a limited, controlled way, for certain specific goals only, the one who was limited was me and the goals desired, passed by. When I opened my life and decided on things I would do, and left open the doors and windows, things I hoped for would often happen. I stopped worrying about having to have...having to do...and got on with real life. If the have to do/have to have happened, great! If not, there was always something else coming along to be involved with. So now--we're selling our home (29 years) and DH will be placed. Eventually he'll die. The ideas hit me like a Mack Truck, but then I'll do what needs doing, and I will find an acceptable apartment. I'll be able to arrange it "my way". He'll be cared for. And later who knows, maybe I'll write novels. Maybe I'll find a new partner. Maybe I won't. But the doors and windows will be open. I''ve got places to go, things to do, and they won't happen if I'm shut in a closed up little room.
Thank you, Carosi, for sharing your wisdom; I respect your thoughts and can relate but can't express them so well as you. And, prayers for you and your situation from your "ranting" post.
I know a nice lady whose husband died 20 years ago, but she doesn't accept dates because she says she's still in love with her husband. Needless to say, her life is pretty closed off from practically everything else too
there seems to be a fine line between ongoing longterm depression and grieiving. from what i have been told on the subject most (what is considered normal)grievances usually can last as little as 2mos up to 18mos at least that is what professionals call the active grieving process. after this i think it gets hazy between depression and continuing complicated grieving. anything like a major life change or special dates can trigger another griving period. so it may not be a continuance of ongoing grievances but a relapse into the grieving state over and over. everyone deals with the grieving so differently and there is no real timeline to move on. each needs his specific timeframe to overcome and learn to manage the grief. we should try to remember that we are allowed to remember our loved ones without the the accompanying pain. but that takes time. i am sure i will need to reread this post at some point myself.
One of my sister's husband had several strokes and his personality changes drastically. She lived with him then for 20 years a man whose actions she couldn't predict. It was not an easy life. After he died from lung cancer she took our 90 year old sister into her home to care for. This required almost 24 hr. care. When she died three years later sister was in deep depression even to illness and doctor's care. She no longer was needed. However, she told me one day when she woke up it just came to her she could make her life what she wanted. No one to look out for or care for except herself and she felt a great load lifted. So she seems to be enjoying life again and just doing what She wants for a change. I only hope I can have that attitude when these days are over for me. Right now I'm waging a battle on three fronts, dh, sister and dd.
I would think, too, that a part of this grieving process is getting to the point where one can let go of things that once belonged to a mom or dad or spouse etc. For some this is really really hard, and I guess they may think this is another way of discarding them when it is really the memories they have will be what always remains..wood is wood and it can be lost in a fire or china can be dropped and broken but the memories will always remain... I wonder if this is what leads to the horading problems some folks suffer ( as per that show on TV)...every scrap of paper is important and they can' t let it go...just wondering.
I believe Mimi is very correct. It is easy for others, even ones children and the spouse to think placing a spouse in a memory unit is some how abandoning them. When I returned home to find it as if my wife was still there, I began gathering those things she would no longer need. It was with great peace of mind I shared many, many things of hers with family, churches and those in need. And, yes, the memories of our life together will always be fresh in my mind as my life goes on.
I learned that lesson (that material things are just that….material….it’s the memories that last). When my DH’s grandfather passed away he had a lot of nice antiques that we would have liked, but DH’s uncle sold them all to a dealer without even asking us if we wanted any. At first I was upset, but after a while I realized that we didn’t need things when we had our memories.
I lost two very dear friends this year. One of them gave me a pair of her gold earrings and got to see me wearing them. She was an accomplished needle worker. I wanted one picture to keep and it was not to be. Everything was sold at auction to people who didn't even want them. It hurt. The other friend was like the sister I never had. I repeatedly asked for a jardiniere. Family refused. Everything they didn't want went to Goodwill. Many of her friends had taken care of her in her final months and were devastated not to have a keepsake. I did get the jardiniere after asking yet again. Sometimes a keep sake means a great deal.
Tom: I like the way you handled your situation. I think I am going to give my wife's clothes, purses, shoes, and even some jewelry away. The children don't want me to, but, she is never going to use them again and the longer the clothes hang in the closet, the less use they will be to someone. I would like to be able to see some of her many friends enjoying them. I think it would make me feel good and I know that she would approve of it if she was able.
I agree, keepsakes do mean a great deal and even to me. When my mother died, I went through all the photos and found one or two of here with different members of the family. Then I went through her clothes and jewelery etc and prepared a gift box for each of them. For example, my niece was about 3 in one photo and sitting near my mom as she played the organ..The 3 yr old was wearing a little jumper my parents brought her from Ireland and I know her mom kept it. So I found the suit my mom was wearing, jewelery and all and put it all together with the photo and some other little things that belonged to Grandma. My niece was too young then to appreciate it but she does now. I gave all my mom's siblings something of hers with pictures too. Then I kept some of her clothes...things that were her favorite and the rest was donated.
When it comes to my DH if he goes first, I will hang on to all of his things for a while and then do the same thing for the kids, grandkids and siblings and special friends. We can't keep it all, we just can't. But to this day, I have every card, mother's day card etc like that from him and the kids.
The things of my dad's that meant a lot was his doctor bag and instruments, his diplomas, some of his goofy ties and caps...and his lab coats...I really miss my dad...