I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. I would like to hear your opinions and ideas on how or if you handled this situation.
Joan Separate [or detached] lives during the ALZ journey is best for both parties I think because it keeps the caregiver more alert to changes in their spouce and hurt feelings when rudeness or hatefullness to loved ones happen. Remember the Alz persosn forgets anything is wrong most time - as is our case. We are in stage 5 or early 6 and thankfully he is still able to do all the ADLs.
My DH is used to me being gone for short periods of time and is content to stay in his chair till I get back. He sleeps late and this allows me to go to water-aerobics at 7 AM. Later I go pick up our Meals-On-Wheels lunches. Sometime after he is settled in for the afternoon I go play cards with some friends for an hour or two.
He does watch me constantly when he is awake and is generally easy to care for. He is not a wonderer yet but the full moon gets him a bit confussed. I need to watch him more closely during this time as he is more anxious - like getting into the refrigerator repeatedly and eating anything he can get his hands on. So far he does not go outside or pace a lot as others say their spouces do.
I am trying to be able to have a life so as to keep my sanity. It hurts so much that he is not the same person I married but it has not kept me from loving HIM. This disease robs both of us OF EACH OTHER in so many ways. It is so hard to stay "in the moment" and not worry about the past or the future. Each day is a new experience and so we must take life one day at a time.
joan i read your blog with a heavy heart because like Sid my DW is at about the same stage. She pretty much functional but requires me fully care for her needs and misses me if I leave the room to go anywhere in the house even. If i do go for a walk or go outside she gets very anxious and paranoid. because of that, going away from home without her is impossible. leaving her with others only makes it worse. while she can't remember anything 5 minutes later if she gets upset it takes time to settle her down. Tv doesn't work because the only shows she likes are the game shows and even then can't remember which ones she just saw. Her greatest pasttime is search a word books and her computer games. She does both regularly enough to remember how to do them. Which leaves me with virually nothing to do and it is driving me crazy. While I know things will never go back to what they were it would be nice if for just a few minutes the old person would return. After 50 years of marriageI guess this is the way our life together will end and it sucks big time.
Joan, Thank you so much for this blog. I have been feeling the same way. When I am doing the caregiver thing he doesn't even care whether I am here or not. I think he is glad that there is someone here to take care of him but sometimes I wonder if it would matter who it is. I have felt like for quite sometime that we are two different people living in the same house. I hate it but that is how it is and I guess the sooner I accept that the happier I will be.
Our children have been on my case to get out more and not be tied down here. WIth great trepidation I hired an aid through out local VNA to stay 2 hours a day, three days a week while I have some PT and a little time to myself. He has been on his best behaviour and seems to like having her come. That was a huge surprise because, like many of you he is never far from my heels as I walk around. But like everyone else.....I fell like I need a life outside these walls. We still have plenty of friends and they are willing to meet me for lunch on my schedule or go shopping.....but...like many of you....I feel guilty for leaving my DH at home while I try and enjoy myself. Are we just masochists?0 Why do we feel guilty about leaving our spouses when we did when they were younger and healthier - off to work, shopping or lunch on our own. I feel your frustrations!!!!
I have been sending my husband to daycare or leaving him with an aide for 4 1/2 years now and have not been guilty about doing it. However, I don't see it as building a new life for myself, or making new friends and interests. I use the time to exercise, visit my Dad, run errands, food shop, get my nails done, get the car washed/worked on, go to the bank, do AD advocacy, etc. Occasionally (about once a month), I do meet a friend for lunch. I see several obstacles to doing what Joan described in terms of building a new life, while our LO's are still living at home and somewhat "with it", even if we CAN get around the emotional hurdles. First is the expense--I would guess that most of us have little unpaid caregiving help; so each hour must be paid for at $15-$20/hour, and if we are doing that we will be inclined to use the time to get the necessities of life taken care of. The second issue, for me, is that most of my friends are married and still working. Those that are retired have second homes in other states, or travel quite a bit and are not available. As for making new friends, I know very few widows close to my age (62); and those I do know are still are working full time and/or ready to date someone. Since their husbands didn't have a disease like dementia, their lives remained relatively intact during the illnesses and they didn't leave their jobs and outside interests behind. I have a friend who will introduce me to a group of widows she hangs out with, when I am ready, but none are in their 60's (I have nothing against having older friends, but there are generational differences.) So I don't really have an answer to this dilemma.
I could have written the same words Marilyn, other than my husband is in a ALF. I don't know any widows at my age (61) I did go to the movies once with a lady whose husband is in the same ALF...she is 78 years old. We met some of her friends there that ask us to dinner...the youngest was 75 oldest 90 years old. They were all very nice, but,I could tell they felt sorry for me.... I felt sad. One of my best friends who is married, made a joke that I had dinner with the Golden Girls, however, at least they ask me....she doesn't.
Kadee--I can understand that you didn't fit in with the group when you went to dinner. I could see doing it once in a blue moon, but after all, friendship is usually based on common life experiences and that doesn't happen when there's a 15 to 30 year age difference!
Your comment about your married friend is very sad. I have thought about my friends who don't stay in touch--what do they think I'm doing with myself? Are they so busy they can't even take the time to pick up the phone or send an email? I know that if the shoe had been on the other foot, I would have been there for them. Others here have said to forget about old friends who don't stay in touch and make new ones. But that gets back to the central question of what this blog/thread is about. It is easier said than done.
The only thing I can think of is that later on, if I place my husband, I may look for a part-time "fun" job or volunteer job to get me out around people of different ages. Have you considered something like that?
Marilyn, I have considered a part-time job, but, they are kind of hard to find in my area. Most are taken by younger people working 2-3 part-time jobs to survive. I do stay in touch with my friend...she lives about an hour away, by e-mail. And, when her first husband passed away suddenly, I went at least 3 times a week to be with her, always tried to include her for dinners out with my husband & me. She is married again. Don't take me wrong, she would love me to come for dinner, however, I would be the one driving there. At least my High School friends meet me half-way.
I took advice from these boards and hired someone early on twice a week for 4 hours. It was the best thing I did for myself. My DH is at about stage 4 or 5 and is still very aware. He's always angry with me when I get back but gets over it soon enough. I'm out doing necessities like banking, grocery shopping and hair cuts. It's not what I'm doing while I'm out it's that I only have me to worry about for 4 hours. It's worth every penny.
Joan1012 - don't forget that you also do not have him following you. Now that we left my sister's where it is kind of like home, he wants to go everywhere I do. I miss not being able to just 'wander' around the store not having to worry if he is bored. I don't buy or like shopping, but I do at times like to just wander aimlessly around the store never knowing what I might see.
I also could have written the same as you marilyn. while DH is here i find myself getting out in essense to be away from caregiving for a few hours but not anything meaningful as far as reconnecting my own life. my life is his life while he is still with me as i see it. i cant concentrate on anything long enough to enjoy it really right now. until then i mainly just do like everyone else and take time to be out among people and free of caregiving for a bit. even that serves to alleviate some of the daily stresses. like you my married friends dont have many common interests anymore and unless they are family dont want to include a single female in the mix. a volunteer job or part time would be a nice way to get back into meeting new friends. sometimes i cant help but think of my married friends that if the shoe were on the other foot, and something like this happebed to them, they would get a dose of their own medicine. and find out how terrible it is to be excluded due to no fault of your own.
Divvi...I have had the same thoughts, not that I am wishing this on anyone..but I have also thought about how others will deal with it when they lose their husbands. Since most women marry older men, and men have a shorter life expectancy, it is bound to happen.
Kadee--I know paying jobs are in demand--actually, I worked for many years and volunteering actually appeals to me more.
Right now I don’t have time to build a new life for myself. I am fortunate to be able to work one day a week & DH stays with our daughter on that day. Tuesday a friend of ours from church took him out to lunch & then to the library. They looked at books with pictures of naval ships. Meanwhile I was at the VA getting advice on the paperwork I need to fill out to get him some disability benefits. Then today I went to a Ladies Bible study while DH went out to lunch with our Pastor & then over to his house until I came to pick him up. Sunday our church friend will take him out to lunch again to give me some time to go shopping or whatever I want to do by myself. I am so thankful for these few hours of alone time, but by no means is it enough time to do anything but enjoy a few moments by myself. Marilyn, I agree with you about the price of help & not being able to afford it. And the fact that most of our friends are still married & working. You are fortunate that your DH goes to adult day care, but I know that the time he is there gives you the time to get things done. I was so hoping that my DH would take to the adult day care, but he didn't, so I'll just have to wait until he is ready
One of the things that makes the rare event where I can travel to Iceland work is that during all our married life we did have separate activities. After my DH retired from the USMC, I resigned my regular commission and took a reserve commission so I could continue with my own career. I got out because my FIL's health was not good and my DH wanted to be closer to him and because the man was NOT my father I could not get a humanitarian transfer..this is a whole nother story. But I digress..the point is that as a reservist I had a lot of Active Duty time that took me away from the home front. Sometimes he could come along other times not. At the same time he liked to go gold panning and the dust drove me nuts with sneezing so he and his buddies would go off for a week and be boys..After we both hung up our uniforms, he would still go on his golding trips with the guys for a couple of days and I would go see my folks alone etc. In recent years I have gone to Iceland alone because the trips are just too hard for him in the preDX ALZ days so that now I go with his blessing. The trips are way too short and I always miss him and wish he were along to share the events and I use my cell phone and call every day both to wake him up and tuck him in at night. So that has worked.
What I am finding hard now, especially with 2 girls living overseas and one in VA and involved with her family and her own profession and the social networking all 3 are able to do is feel frustrated. I don't for a minute wish they didn't have all these opportunities but it makes me realize how much I have lost and it makes me feel like life if passing me by. And friends also are going on about their lives, ski trips, trips together, family gatherings etc...makes me feel like a space alien sometimes.
I can relate to this discussion. My dh is probably into late stage 6 with 7 creeping in slowly. He has an attention span of about 1-2 minutes on most things. He gets very anxious when he can't find me. He never goes off without me because no one ever comes over to help out. Many of the post made here hit home and I, like divvi, feel like my life belongs with him until the end. But with that said I do know that I need time away. Someone here is going to have to help me. I have thought about finding out exactly how much, what days, and the location of a day care for dh, calling the 2 local brothers and 1 sister, asking them to split up the cost once a week for me to just get away. This will give them the choice to either come help me out or let go of some of the money (they don't have) to assist me with their brother. At least they will know I need help of some sort and maybe be willing to work something out with me. I wish all of us well with figuring out what is right for each of us so we will be able to get back to living once this journey is over.
At this stage, my husband needs me too much for me to think about anything for myself. After I wrote that sentence and re-read it I could feel all the eyes rolling at that martyr-like statement. But, this past 6 or 7 months, he goes everywhere I go. I can't think of a way to get around it. Every night before bed he asks if we have anything special to do tomorrow or if we're going anywhere. The last time I had a hair appt. I told him the only place I was going the next day was to get my hair done. He said he would go with me. I told him no one brings their husbands with them, there's nowhere for them to sit. I lied. I hate lying. Today he came with me while I had a mammogram! Of course, then we did our grocery shopping, etc. We were gone all day. Last year, I wouldn't have been able to drag him out of the house for anything. I'm going to be doing something in a week or two requiring me to do it alone; I'm currently trying to think up a good one to tell him. But, I hate it. I feel so guilty. A minute ago, he came in my room while I was typing this. I have to pray he doesn't look at the screen and see what website I'm on. If he sees the word "Alzheimer's" it would make him very upset. Of course, he would forget it by tomorrow. He isn't as far along with his disease as most of you on this blog, but right now is a good time for him. I would like very much to be able to go out with a friend for a while, but it isn't going to happen right now. I know I need time for me, but at the same time, if he has little time like this left, I feel the need to be with him as much as possible. Last week, I wouldn't have written this, I felt so different. Each week is different. But a life for myself away from him isn't happening yet.
Bev I hear ya. My Dh does the same thing. Every day more than once, he asks if he has any appointments or places he has to go. It seems to be more problematic when we have more doctor appointments in a week than say only one or two. When he gets the answer no we don't have to go anyplace he is relieved..for a bit then asks again. I know what you mean...while they are somewhat present we do feel we need to be there with them making the most out of what time we have with them. Yet if we don't get some me time away from the constant 20 questions and non answers to to questions like would you like this or that for dinner and get " whatever you are having" for a non answer...we will go batty. Then there is the Is there something I should do, like start waming the soup..yikes no don't do that..you will forget you put it on the burner maybe or if they ask if you need help and give them a simple task to do they forget to do it..even forget to make a little something for their own lunch or snack..yesterday they could do this, this morning they could do this but by evening no not a chance. We have to learn to not feel guilty about stealing a few minutes of a couple of hours for our own sanity, How else can we recharge our batteries for the next round. We are not Timex watches that keep on ticking or the energizer bunnies that never run out of fuel.
Excellent discussion thread ... as so many are on this site! Having read and agreed with at least some of what everyone has written, I'd simply add this: I definitely need my 'me time' ... and probably should take more advantage of our daughter's willingness to 'take mom to give me a break' time ... because I have just so much patience for answering the same questions over and over, reminding her where things are in the house, or how to send an email, or whatever. But at the same time. I also see my wife's declines coming so quickly that I want to spend as much time as I can with her while there is still a lot of 'her' inside. A dilemma, for sure, but for now I choose to spend as much time as I can with my wife while we can BOTH enjoy that time together.
Bev--in earlier stages I took my husband everywhere I went, it was before it was obvious there was anything wrong with him. He even went to lunch/shopping a few times with me and my girlfriends. His friends, for the most part, weren't including him; at least mind did at that point. Your post reminded me of when I used to take him when I had my hair/nails done. Other clients would remark (after we had gone) how romantic it was that we wanted to be together so much. HAH! If they only knew the real reason; just shows how mistaken people can be. At this point I can still take him for quick hair appointments, but he doesn't have the patience to wait while I have my nails done, so I leave him at home with an aide.
My DH is still very aware in some areas. Yesterday we had a long talk and I told him I need to get out of the house more than just grocery store, pharmacy and doctor's appointments. The longest I am gone is about 2 hours and I think I need more than that but I'm afraid something might happen if I am gone longer. I also said I need to associate with other people...he said he doesn't want to be bothered with people so I told him that it doesn't mean I shouldn't. Finally he said for me to find something to do outside of the house but I still don't think he realizes that Alz affects both of us. Probably me more than him! Next week I am taking myself on real shopping trip and will be gone however long I am gone and see his reaction when I am not home in 2 hours or less. It's a start and if he is okay I may volunteer for something at our church. At least I will see other people!!!!.
We have always had some "me" time in our marriage. We were both professionals and had different circles of friends in addition to our couple friends. DH loved playing golf and I can't so in many ways we had separate lives during much of our marriage. Like others here, I spend 24/7 with my DH and it's the constant togetherness which gets to me now and is a big adjustment for me. Although we have a live-in aide, I don't seem to have any time for just myself - they go with me every where. Since DH is still "with it" I do want to spend as much time as possible with him while he still knows me.
What my heart has been telling me about this subject lately is that if I don't develop a life of my own—and soon—what I am going to be left with is NO life. When we cut chunks out of our lives because our loved ones can't participate, or because it's too much noise and activity for them, or because they don't want people to see their disability, or because we're so tired that we can't find the energy to get out of the house, then eventually we cut so much out of our lives that there is virtually nothing left but caregiving responsibilities.
Whether I want it or not, separate lives are coming at me like a freight train. To be honest, although we are in the house together almost 24/7, we don't have that much of a shared life already. Without the little "outside" time that I have, I wouldn't be able to stay here and be a caregiver. Lately I have been starving for more of a life—just normal things most people take for granted. When DH was first diagnosed, I wanted to spend all the time possible with him, and I did. I even quit a job because I didn't want to miss all that time. But after eight years of being a caregiver, I need more than two people in a silent house. If my pre-AD husband was here, you could lock us in the house and throw away the key, and I'd be fine. But he's not here any more. And more and more, I feel like this desire for a normal life is my own survival instinct kicking in, to make sure that one of us survives this terrible disease.
You must have been reading my mind. You wrote exactly how I feel. Especially the part about if my pre- AD husband was here, you could lock us in the house and throw away the key.
I can relate to this also Jan. I have been having some serious mental issues lately and know it is because of what is being lost and what will be left after my dh is departed. Please pray for me. I need it right now. I thank you in advance and will life all of you up also.
It's been 6 long years. I don't know what a normal life is anymore. I see the world passing me by. I see husbands and wives together and know that will never be me and Jim again. I NEVER want to be married again. I NEVER want to have to take care of another man....NEVER. I have a hard time finding anything to be joyful about in this life.
While I have very depressing days - this week found myself pulled down into PJ's world - sat in housecoat with him watching TV and napping in chair. And like many of you I hate thinking that there will be a day in the future when I could do something and have no friend to do it with and too old to start over. For past 2 years of this AZ, been stuck at home. Have no help, no relief as AZ took away what mutual friends we had. Last 2 couples live hr away and have families locally. So, except for one hubby taking Pj to lunch every 3 wks or so, that's it. Lately haven't had the energy to work even though I can do some things from home. It's been a month since I was in the office. Afraid to leave him even though his physical condition means he doesn't walk outside so wandering isn't a problem.
PJ loves our dog but can sit next to door and never hear him barking to go out or come in. Next Tue dog has surgery and will require 4 months of rehab. Guess who will have to do that! I do more laundry now because of AZ than have done in the past 30 of our 50 years, since the kids were little. Hate having to clean bathroom every single day fr his accidents. (At least lucky that I have a bathroom I can use upstairs where he doesn't go.)
I need more laughts fr Phranque. Loved the chocolate suggestions. It helps on bad days to read and know others have worse problems, and feel such concern for those who are just starting this struggle to survive.
NancyJ. I strongly suggest that you buy a disposable toilet. It never has to be cleaned, and is environmentally safe. They are pretty cheap and hard to find. The only drawback is that you cannot simply flush them down the toilet.......
I have started to build more of a separate life. If my friends invite me to something and DH says he doesn't want to go, I go without him. He's still ok alone, or he will plan something with one of his friends. I will admit that I almost look for things he will say no to so I can go alone.
I think on another thread someone coined the term "married widow". To me that is so apt. DH does not have an official diagnosis (yet) but likely ftd. One of the main "symptoms" is the relational changes. Not just our relationship but his relationships with others----both family and friends. His lack of awareness that things are different. It hurt at first but now that I understand more of what is going on, it doesn't bother me so much. But there are moments when I see other couples sharing plans and activities together and even moments when he talks about doing something we planned for this stage of our life and I know it's no longer realistic. He is still early stages so I am able to get out and do errands etc. But one day I realized I wasn't doing much for me and started to plan occasional get togethers with friends. At first he didn't want me going but that was partly my fault----I would talk to him ahead of time and ask for his input as to when would work. Not a good tactic! I was thinking he'd be more open to me going if he participated in the planning . . . but not sensible for someone whose decision making ability is going out the window. I eventually (from reading on this site and elsewhere) learned to make the arrangement and tell him the day off "Oh, I'm going to meet Linda for a walk" etc. And go off. But I can't be gone too often or too long or he resents my absence.
There were some trips we'd wanted to take . . . but they aren't going to happen now. Too much for him and it wouldn't be any holiday for me. Our offspring have encouraged me to go on my own but even that's not workable. Sigh. He had agreed to me going by myself but then he started to say he'd come along too and he just couldn't handle a different place every night or the multiple changes.
In order to keep things organized, and "on topic" of this "separate lives" discussion, I have moved the last two comments about flying and travel to an existing travel topic, which I have brought to the top.