Someone recently posted that they had one or two young adult children still living at home . . . and mentioned that when they moved out, she figured it would be lonely without their conversations and activities. I was going to respond to that but can't find the discussion now. Does anyone remember what the topic was or when it was posted? Thanks.
I don't know which thread it is, but I surely fall into that category. My youngest is 17 and will start college in the Fall. His 3 sisters are 19, 21, 23, and are all in college or grad school a couple hours south, so the house fills to the brim during breaks and holidays with activity and shoes, then it's very, very quiet.
I too will have an empty nest soon. My daughter will be going off to college and I am just wondering dealing with my DH and not having to look after my daughter to help occupy my time, "What will it really be like?"
Rachelle, I am pasting in what I wrote on Jan 25th or so. I would love to hear from you on this. I am really trying to prepare myself for this inevitable passage. Prior post as follows: Sorry, now I'm on a roll about AFTER. There are many AFTERS! My youngest son is preparing for college in the Fall and I am dreading living in this house AFTER with DH. OK, now I've said it. This is not the first child I've sent off into the world but this time the AFTER is pretty bleak, being alone with DH. It's one thing to run a household with some life left in it, a happy teenage son with a band and friends to brighten things up. It's quite another thing to run the household with just a very wooden DH. Sorry. With my older two kids, the empty nest also represented a hope for a new phase in the adult relationship. You all know what I mean. Growing older and growing closer and making plans and feeling proud of having reared some nice young adults. An empty nest and a new beginning. Now, the empty nest looms large. There will be no interesting conversation or making new plans or friends. I will come home every day after work to a strangely quiet house and husband. While my son is here, I transition from work to home knowing that I need to provide a happy and normal environment. I fear that I will not be good at taking care of DH alone. I read about many of you doing it so well. Not so sure I'll handle as well as so many of you do. Sorry, getting a bit weepy now. I WILL go take the dog for a walk in the sun, then tackle the mountain of paperwork sitting in my dining room table. Thanks for providing a venting space.
Isa-I used to dread coming home to a very quiet house with a hollow shell of my husband still at home. I never knew what disaster I would have to repair. It is just another phase you have to get through-and you will. If your husband is still safe at home alone try to have dinner out once in a whie with a co-worker. Don't let yourself become isolated.
When our children were out of the house I missed them like crazy but at the time my husband seemed fine and we had a great time finally enjoying each other and had a chance to travel. Then came the grandchildren and the house became crazy and wonderful. We were extremely involved in their lives and loved it. Now we're unable to get to those school functions, etc., there isn't much babysitting, and I miss all of that like crazy. I'm getting used to the quiet, miss everything about my past life, but this is a new chapter. Not the kind of chapter one expects, but something we'll handle, just like the other bad times we had. That, I guess, is life.....
Thanks, Isa, for pasting your comments here. It was your post that I'd wanted to respond to. Like you, we have older children who've already moved out but still have two university students living at home. One will likely move away later this year and the youngest will probably be gone in a couple of years.
Over time, my husband's conversational skills have declined. Small talk or surface talk is the extent of most conversations these days. About a year and a half ago during dinner one evening, it suddenly hit me that this was what I'd be living with once our youngest two left home. I got a preview of it last summer when DH and I were away on holiday. Just the two of us and he had hardly anything to say. But that trip also opened my eyes to how little routine we had in our normal day to day life due to living with two university students. Their class schedules are different each day & they work part time (varying hours) and are also involved in other activities and get together with friends. While away, we were able most days to keep to more of a routine. Even eating meals at more regular times was calming for DH so when we got back, I've tried to have meals at regular times rather than setting supper time to fit our student's varying schedules.
I know I will miss the spark and life that our younger two provide in our household. But I am hoping that their eventual departure will be partially compensated by the fact my DH won't have to deal with so much ongoing daily change---something he finds hard to process.
One thing I've noticed is that our youngest two aren't inviting their friends over as much as our older ones did at the same stage in their lives. It's hard when they know Dad can't handle too much activity or follow and participate in conversations very well with their friends anymore. We have no confirmed diagnosis yet so they can't explain what's going on to their friends.
Rachelle, you're describing my life, pretty much. When my third daughter left for school (she's now a sophomore,) she said "you're going to DIE with just dad and Gabe (her eccentric brother) at home!" Well, I haven't died yet, but Gabe himself leaves in the Fall, and then I'll really be depending on 2 cats and a dog to provide some life to the house. I am not bound by away-from-home work obligations at present, as many are, so my thought for next year is to try to take J on some low-key travel adventures which are of interest to me. (He has no particular interests left, but usually enjoys whatever I choose.) As for the empty space between trips...well, perhaps since I find that I accomplish my writing projects more efficiently away from my house, I'll spend more time at coffee shops--parking J in a comfy chair with a cup o'joe and a newspaper (or something) while I attempt to make progress nearby with my laptop. We'll see. For me, the key has been increasing reliance on myself, appreciation of my own company, and finding distractions and hobbies that keep me into life. If it ever gets to where J becomes uncooperative, and I start to feel trapped...well, that's when we look into babysitters and I'm forced to become less frugal.
hmmmm after reading all these replies I would like to say welcome to the club but this is a club noone wants a membership in,I think most of the members are living with only their LOs at home,but then again depending on the stage somettimes its like having a child around again,I get so tired of answering the same question ten times or hearing I didn't do it,I sure never envisioned this for retirement
I think when dementia begins when there are still children living at home, there is an extra loss of not being able to experience that anticipated time as husband and wife together on their own. Travel, if still possible, will be overshadowed by the dementia. Doing things with grandchildren will be affected . . . taking in local activities and events will be limited. Getting together socially with friends will likely happen on a much smaller scale and meanwhile, most of your friends (in same lifestage of becoming empty nesters) are off doing all the things you (as a couple) were looking forward to doing.
My younger children refer to my DH as an "old man". They don't say that in a derogatory way but it's their way of accurately describing their reality-----their dad is old before his time . . . he lives like someone 20 or 30 years older than his actual age. I ache for their loss of having an adult relationship with a father who was there for them in their younger years and always wanted to have a close relationship with his children. His relationships with our older ones can best be summed up now as "distant". He is still their dad but spending one on one time with him isn't easy-----what to do with him and what to talk about is challenging for them. One year recently I hit on taking our older ones out for lunch or dinner for their birthday. It wasn't a great idea because hubby's communication level was becoming more shallow than I'd realized. He found it hard to keep up with the conversation . . . the background restaurant noise didn't help so we didn't repeat that. At larger family get togethers, the younger generation visit together and hubby sits on the sidelines unable to significantly join in . . . plus all the extra activity tires him. Inviting each adult child over separately is okay but the table discussions are also affected by dad's limited conversational ability.
Our younger two don't invite friends over anywhere near as much as their older siblings did at the same age. They know their dad can't handle too much extra activity plus they never know what he may ask their friends or what comments he'll make (that often reflect he isn't processing whatever's being discussed). In our case, we have no confirmed diagnosis yet so they can't explain what is going on with their father to their friends.
Something else I wonder how other spouses in similar situations deal with . . . I feel like I so often am a single parent in a two parent relationship. I am the one that our younger two approach to discuss small and larger issues. I am the one who has had to set any limits (ie call if you won't be home for dinner or will be in real late etc). How do you balance that with your spouse's sense of still wanting parental involvement. A lot of the time my DH seems oblivious to how little he is actually parenting but there are moments when he'll be aware that I am speaking on his behalf and want to get involved.
My kids have made that observation as well...that their dad is an old person now. His actual age is 62, and he's always looked and acted younger than his years--well, up until AD of course. One of the quirky behavioral traits he's acquired with AD is a tendency to spend a little too much time smiling and staring at small children in public...to the point that it can seem a bit intrusive and creepy. My 19 yo daughter pointed out recently that it's not as creepy as it was a few years ago, because he's "starting to look like an old guy."
Emily----I am super challenged right now re travel. There are several trips we wanted to do but organizing them is a real challenge. Hubby finds it too frustrating to do any planning. He still wants to go away but no longer knows what he wants to do for holidays. Last year he mentioned one idea so I did the bookings but he wasn't happy that I'd done that and our time away was overshadowed by his displeasure. He has mentioned two or three ideas for this year but when I've brought up his suggestion a week later, he no longer is interested. One idea I have (that I think he'd quite enjoy) he is totally against.
I too am working on pursuing some activities that I enjoy. I'll often invite him along on the out of home activities, but he mostly prefers to stay home. So I get some time on my own and so long as I'm not away too much or too long, he seems to be okay with that right now. I'm especially making time to get together with friends on a fairly regular basis-----go for a walk or tea together or do some activity together. Those planned times I just announce to hubby ie I'm getting together with such a person tomorrow in the afternoon. He naps every afternoon so that provides me with a chance to get away.
Over the years I've volunteered a lot (mainly with our children's activities) and now I've chosen a volunteer activity that I can mainly do from home. There were other things I'd wanted to do that would have involved me being out too much so the activity I am involved with works well.
Keeping these things in my life is very refreshing . . . keeps me going and offers me good perspective.
Wow, Rachelle, Emily: You two are describing my life at home with DH and son exactly. Like all of us on this board, I try not to project too much into the future, but as you know, we are very different from our peers at this stage of life. I feel the difference from other couples more and more as we progress in this disease. Even the college application process, FAFSA, campus visits etc. are different due to AZ. We have taken DH on every campus visit up to this point. Now, my son has been invited back by one college to visit with other honors program families for a weekend at a hotel near campus. There is no way for DH to really be able to participate with strangers and make intelligent conversation and observations. You know what it is like to try to do the participatory parental events that high school brings. I am having anxiety about how to accomplish this college weekend without him and without hurting his feelings, etc.. I also have to try to be fair to my son at this point in his life. So, conflicted about this issue. Also, we have tried to NOT be very public about DH's condition while son was/is in high school. I decided that it wouldn't be the central event in my son's life but, of course, it's HUGE. I have definitely seen a difference in the number of friends that he brings around compared to my older two at this age. Mostly, the kids who come by are those my son has known since pre-k. One big difference from both of you is that I work full time as a teacher, and will need to work to get my son through high school. When my husband was diagnosed almost 4 years ago, the main problem was short term memory and he was let go very politely from two jobs in a row after having a great career. We took a major financial hit at that time and may never really recover. But my work keeps me happy and focused. When I come home, however, I have to do a major transition and I never know what to expect. Sometimes I sit in my car in the driveway and take some deep breaths before entering. But now I am rambling. I do not know anyone else in my situation at this age. I have contacted the Alzheimer Association but there are no age appropriate groups, although at this point age would not really matter. As you have stated, our husbands have aged before their time. Sigh... I do try to keep up with friends and colleagues. Usually just keep quiet about my situation because it really does not translate to others of my age. I am 56, husband is 58. I fear that next Fall I will be living in a silent house with a silent spouse. Sounds like the beginning of strange children's story. :)
I can relate to you with kids leaving the nest and going to college except in my case as a widow, I am experiencing much the same feelings as you are feeling except I am now alone in an empty house. It is a difficult transition in both cases. I went through the children leaving the nest 20 years ago and recall the transition except at that time in our life my DH did not have ALZ.
It is unreal how different "home" is now with the absence of another body in residence, even if they are chairbound. I feel for you younger caregivers and victims.
lmohr, Your response really puts this into perspective. Thank you for sharing your thoughts. As soon as we get the diagnosis of AZ or FTD or progressive cognitive decline of any sort,and we begin to digest it, it seems our spouses begin a journey of leaving us. I am at one point in the leaving and you are at the other end. I know that you and other people on this site have had the full experience. Your insights provide a window on the future. I have read and learned from your experiences over the years. On this website we are all bound together in this unwelcome circumstance.
So much I identify with here. I'm 54, DH is 64 and looks about 80, son is 19 and daughter about to turn 17. Both kids went to boarding school so we hit empty nest 2 1/2 years ago. I was looking forward so to clearing up the chaos inour house, having more time for my own projects (I teach at a university) and rebuilding my relationship with DH. Instead we had 6 frustrating months when none of that was working until finally he got diagnosed with Lewy Body Dementia.
I then spent almost two years getting things financially into order and renovating and moving to a smaller house (which it happened we already owned). Renovations (even though it was just supervising a contractor) with an unhelpful husband were hell--lI was very thankful my 16 year old daughter spent last summer helping me.
My husband is still able to take care of himself on a daily level and stay alone, so right now I feel blessed to have 30% of my time back (that includes the work time where I can pick my own project). I'm trying to find what I will feel inspired to do. I'm giving a paper in April on feminism and caregiving and writing a short piece on sexual abuse for an anthology on queering sexual violence. And I'm enjoying getting back into gardening--I wish it would warm up.
Rachelle wrote: "How do you balance that with your spouse's sense of still wanting parental involvement. A lot of the time my DH seems oblivious to how little he is actually parenting but there are moments when he'll be aware that I am speaking on his behalf and want to get involved." This drives me crazy, particularly my husband's complaints that I am not including him. I'm trying to force myself to tell him things when we are alone so that he can get his two cents in then and if he complains later I can tell him I did tell him, I did involve him. But I really want not to be bothered because I have to do it myself anyway.
Our daughter has been seeing a male therapist at her school weekly for more than a year--I suspect that is in part about having a father substitute. Our son flunked out of college his first semester last fall, but is at a different college doing well this spring. I arranged an academic coach for him and so he also has someone who is talking to him about the details of what he is doing. At 19 I think it is better for that not to be a parent.
pamsc----any advice from your experience of moving with a spouse who has dementia? We probably will have to move in the next while and I am not exactly anticipating it. I helped my parents downsize recently and my DH was definitely more hindrance than help. In fact, several things that happened during that move made me realize something was not right with dear hubby.
The sheer amount of things to do will totally overwhelm him . . . the disruption of sorting, packing and moving will cause him anxiety . . . routine (which he needs to function well) will go by the wayside . . .
Isa----I wish I could share some wisdom with you regarding the upcoming college weekend. We have gone through a few awkward times involving situations where hubby didn't relate well with the other parents. One in particular was quite negative. I encouraged DH to come along and in hindsight, it probably would have been better for him to have stayed home. But at the time, he wouldn't have appreciated the suggestion that he stay home. Sometimes it's a no win situation either way.
I can relate somewhat to your financial situation. We experienced something very similar years ago when my husband lost a job due to work closure and house prices were rock bottom low due in that town. We lost all our equity and have never been able to afford to buy a home again (as we had to move to a more expensive area to obtain work).
Isa, I am 56 like you and it is my wife who is 58 and fading. Sharon is quite a bit further along than most of the spouses I have read about on this forum. She is completely inncontinent, close to zero verbal skills, must be fed, dressed, bathed and often is so off balance that she needs to be walked so she does not fall. Even when she sits quietly she is not engaged in anything... she does not look out a window but stares into space. She can not even sit straight anymore. She is ridgid and leans back and to the left. Her head tends to drift back also so she ends up looking at the ceiling if I do not put a pillow behind her.
Our daughter Kathleen is a senior in college but lives home to help me care for her mom and she commutes to school. I am still fully employed and Sharon can not be left for even a few minutes so we have to hire an aide to come in for about 20 hours a week. Kathleen has told me that she is not leaving until her mom passes. I have gotten used to the idea that my wife is already gone and that part of my life is over. What consumes me these days is the fact that Sharons AD shows all the signs of being familial and I fear for my daughter.
We were empty nesters but one of our kids moved back after graduation. I can honestly say that I enjoyed the year and a half I had alone with my husband even though has had been diagnosed with AD. The youngest who is in college will call often to check on me.
Thunder- my husband does have familial ad. Like you I'm concerned about my children. I wanted to let you know your wife could be genetically tested to determine this. If she is a carrier your children would have an opportunity to participate in the DIAN study. There are scholarships available to pay for testing. I've attached a link:
Because the renovations were not done in time we ended up having to move mid semester (that is, a busy work time for me) so there was no hope of it being anything but hell. I hired someone more than six months before we moved to come two afternoons a week and help my husband go through and pack up his stuff, partly to get our house ready to go on the market. Actually my husband had two helpers--a woman with caregiving experience and a male college student. He liked working with the college student but that was partly because the college student didn't try to get him to work on the things he was avoiding.
My husband didn't like the idea of moving but was willing to go along with it because I felt strongly about it. I had to live with that and hope afterwards he would say it was the right thing to do, which he has. I took responsibility for everything except his stuff. I simply didn't have time or patience to be the one helping him go through his stuff.
He asked me a couple of days before if he had to cancel his massage appointment on moving day. I said yes, but I probably should have let him go. He tended to avoid key points by spending an hour in the bathroom with constipation. Our movers messed us up--underestimated how much we had and then sent two men initially instead of the three they had promised. But they were very nice--kept reassuring me that it was ok if I changed my mind where something went (easy for them to say as they were being paid by the hour but it really helped me feel I didn't have to have everything organized and right). The only thing my husband focused on was the last clear-out of the old house (a week after we moved), when he kept trying to save things I wanted to abandon.
We had a bed left at the old house for a few days because we had new ones at the new house. We slept there together one night because the movers ended up loading one day and unloading the next (even though we were moving less than 3 miles). He wanted to sleep there another night because the TV wasn't set up at the new house yet. So he had some trouble with the transition, but it only took him a few days to settle in. The satellite didn't get hooked up right initially--having his TV working immediately is the things that would have helped him most.
He's a hoarder. With some things, like clothes, he got rid of some before we moved and some after we moved. His books on cassette tape he won't give up. What I did there was define his space and help him maximize the bookshelf space there, but not let him take over my space. I'm still trying to get him to go through boxes that got stacked in the basement of books and books on tape and VHS tapes that didn't fit on his shelves.
I'm happier in the new house because I have my own separate space that I can keep simple and peaceful and orderly. One level of the new house (a big renovation of a house we already owned) is wheelchair ready and since my space is on another level I will have some privacy when we get to the point of having caregivers. There are renovation pictures on facebook--you can find me by searching my email address, which is in my profile.
As I read all of the posts in this thread I am struck by the fact that everyone seems to either be in or was in a rather protracted period of odd/difficult behavior. While I clearly remember my wife exhibiting some of those behaviors my perception now is that we shot through that stage. She is a complete invalid now and the rest seems like a long ago dream. Maybe I am just blocking.
pamsc----THANK YOU so much for sharing details re your moving experience. I already know I will be handling/overseeing all the myriad of details involved with moving. Right now I am slowly going through our "stuff" and boxing up things to get rid of so that task should mostly be done when the time comes to move. But I know hubby won't go through his stuff. When my folks downsized DH brought stuff from their place to our place and stashed it wherever he could----out of my sight until the dust settled and my folks were in their new place and I started discovering things that DH was supposed to have taken to thrift store or to recycling or that our grown children had wanted. A few things he literally couldn't find a spot for so those eventually went to where they should have gone in the first place. When we move, I will either take things away or ask others to help with that task. I have negative memories of hubby arguing with me about many items (of my folks) that he felt shouldn't be sold or donated or go to thrift stores etc . . . he'd go on and on and on about stuff. That is another reason I am starting now to go through things----I figure it should be easier to sneak boxes out here and there rather than going through that hassle again.
Your suggestion of having someone else help him go through his stuff really jumped out at me. Hadn't thought of that and it sure would spare me some frustration! A specific person even came to mind as I read your post. He and his wife have downsized big time and he is not a hoarder of "treasures" or items "that might come in useful one day". Hubby really likes this friend so I will definitely ask our friend if he'd consider helping us this way . . .
You mentioned buying new beds. Did you buy any other new furniture? We will need to get rid of some furniture and I think hubby will part with most of it without too much fuss. But there are 2 or 3 pieces that take up too much space and I'd like to replace with something more compact but hubby will want to move with the old items. Any suggestions on how to get him onside to buy new items?
As for me, it seems like I'm doing fine all alone, an "empty nester". I see my daughter and her boyfriend (her "intended") once in a while. I keep LOTS of animal "family". I won't leave the house without leaving a radio or television on, as I hate to come home to a silent house. Right now for instance, I am listening to i-tunes, the television is on in the family room and I'm communicating with this "family" of friends. It's NOT a 'home' any longer. Just a place where I live comfortably most of the time. I try to plan my future with school, a career (fat chance, but I imagine). I have a lot to do, feel a lot of regrets, but by God, I feel so alone.
We bought a new bed and a lift chair recliner for DH. In his part of the house the only other new furniture was some bookcases. He wanted to use an old sofa my daughter hates. We let him keep it.
My daughter and I on impulse bought a new dining room table she fell in love with and one new chair for the living room. I also bought myself a new desk. DH complained at one point that I was erasing him from the living and dining room. But then a few days later I asked if he wanted me to move a display cabinet from the living room down to his level so he could better enjoy his special things and he said yes. I think it helped that the new things were mostly things our daughter chose, but I did just do it all without consulting him.
He has his space that so much everything he wants and he cares less and less about the rest of the house. I had two parties recently--doing a favor for a friend at work by entertaining job candidates. My husband knows and used to get on with these people--I've worked at the same place for almost 25 years. He came to the first party but made plans to go to dinner with friends in order to avoid the second one. It is a sign of how he is increasingly off in his own world, not seeing himself as in partnership with me. His world his only his part of the house, I can do what I want with the rest.
Pam, it sounds like you have found a good solution and it is great that you will have your own space. Our house is huge, and badly designed, there is nowhere I can be on my own. But then dh is only content if he's in the same room with me, so it probably wouldn't work anyway. What I do is make sure there's stuff he can mess with harmlessly at his desk next to mine, when I want to sit here at the computer. I haven't had the courage to remove his computer yet although he never turns it on. When I sit and read or do jigsaws in the living room he either watches TV or sits at the table with me watching the jigsaw or messing with the pieces (and putting them in wrong; that's OK, I deal with it after he's gone to bed). Although the house is much too big with a whole upper story (cold in winter, hot in summer) that is not used, and a yard that will be a real challenge to keep up this year, I could not dream of moving. Too much disruption. We'll just stay here as long as I can keep him here.
I am anticipating that there will be a stage where he will want me to be with him, not on another level of the house. But I hope it will help me then to know I have my own space, even if I don't get to spend much time there.
Jeanette, when my husband stopped checking his email or playing with his computer I asked him if he wanted to give it to our daughter. At first he said no, and I just left it at that, but I asked again a few weeks later, and then again a few weeks after that, each time accepting his no answer. When she came to visit the time after that he offered her the computer. At that point he could still remember some things, so I think he was thinking it all over in his head. When he was ready to give the computer up, it was his decision to do it.
I'm doing much the same thing with his stacks of magazines and newspapers.