I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. It is a different take on isolation than you are used to. It relates to my feelings. I don't know if anyone else feels the same. Please post comments here.
Joan I have something similar here. Unlike you though, there is nowhere to go, no one to see.
Sometimes a person will say, well why don't you have a nice dinner and invite some people, or...take him down to your little local restaurant for a pie and coffee. He will like that they say.
Here is the thing. I, yes I, ME, do not want people over while I am entertaining and watching for pee or poop and wandering and all that goes with it. "We don't mind", they say. Well, I, ME, I mind, it is NO FUN for me.
As for the pie and coffee, he would rather have it at home, instead of being led slowly to a chair and spilling his drinks and having people look. I know this.
I am having a problem now with my mom. For the past 30 years I have catered to her every whim. And now that DH is not doing as well, she is getting mad and doing her passive/aggressive thing. And I just have no time for it. Either come over and have coffee with me or let me be. I can't do it any other way. And getting DH out is just no fun for me anymore. I have to plan and work it out to be the right trip and right time. A lot of work.
Joan, you are right, I find myself just staying at home because it is easier.
Hope you all can understand where I am coming from. Feel like I am rambling.
Joan, I am a "lurker" and this is my first post, but I do agree with you. DH and I have pretty much been dumped by all our family and friends, exactly due to the reasons you describe. It is very lonely, as he is 25 years older than I to begin with, and that alone would eventually have been a marriage issue, I suppose. We have been together for 17 years--married for 16--and I realized 12 years ago that he was in early-stage AD. It's progressed now, of course, and your post said it all--welcome to my world, also. I am still working full-time, and hire a full-time aide for him. Any "getaway" costs me $200/day for the aide to live-in. I am very selective about my getaways, needless to say. I, too, just cocoon a lot with him--I love to read, write short non-fiction articles for publication (no money, but great for my self-esteem), and work hard on my fiction writing and my music. I am 63 and he is 87 and very frail and ditsy--I don't wish him any harm, but can't help wondering how long this senile old man--whom I married for his personality--and that was the first thing to go--can possibly live. I've decided that he'll still be around at 105, and I'll be long gone--dead of stress, loneliness, flat-out despair, and all the other caregiver negatives that we all have. So Joan, I think staying home and making it as good for yourself as you can is a positive, not a negative. All the best--your blog has saved my life.
Joan, you life sounds a lot like mine. I am a sole caregiver, even though I have 3 grown children nearby. My daughter comes once a week to see us, stays about thirty minutes. The sons come if I need help with something, if I ask. DH is in stage 6. He goes to a day program three times a week. He is mostly pleasant, has no idea how to do anything. If I ask him to put the garbage bag in the garbage can he puts it with the recycling. He has trouble communicating, cannot remember from one minute to the next, has problems dressing. I have to do everything. He has good health for the most part, but if something bothers him he complains loudly. I no longer enjoy going out with him. If we are in a restaurant I have to order for him. If there is a salad bar he is lost. He has forgotten what to do. We do go to church once a week. Sometimes we go out to eat with a group after church. I have seen people avoid sitting near him. I have very little social life and feel like a recluse. I am not happy.
Joan, I think it's a positive - you are doing what you want to do! We don't have a lot of time for that, so I grab it whenever I can. I take him to DC 2-3 mornings a week; let him eat lunch there, then pick him up; give him his Ativan and he's good for 1-3 hours playing a golf game on the computer. Meanwhile, I have those mornings, plus most of the afternoon to do whatever - except I can't leave the house in the afternoon. As he progressed, I stopped inviting 'friends' over. We were the ones who always had things at our house - no one reciprocated. We go to breakfast on Sun. mornings with a small group from our church - although we don't go to church anymore. I take him to lunch a couple times a week. So, I do get out sometimes. However, I'm just as happy staying home, doing whatever.
Well, I am going to go against the flow here. Social interaction is very important to your own health. Ironically, as you know, it is one of those items touted as a preventative for AD. While I scoff at those lists, I do think socialization is very important and to the extent that you can preserve that for yourself, I think you should - even if it takes some effort. That is the problem, isn't it? Everything is such an effort when caregiving, that we tend to just want to stop trying when it comes to our own needs. No doubt you've earned relaxation and hanging out in a robe when you want, but I would keep social activities for yourself high on the priority list.
You sound like me, Joan, in a way. I like being home. I like reading, using the computer, learning new things. But I'm beginning to wonder if what I'm doing is the right thing. We don't socialize much, but I do have some relatives who still like doing things with us. They're very old, so mostly it is eating out. I do have to order for my husband, but I don't mind it, and he's still ok with the way he eats; he just doesn't seem to like much in the way of food anymore, nothing seems to taste good to him. I have friends I could go out with, but I can't leave him alone for long. If I'm somewhere in the house and quiet, he looks for me, worrying where I am, if I left the house and left him alone. So, for the most part, we stay home. He likes it that way. Every night, before he goes to bed, he says, "We're not going anywhere tomorrow are we?" He's happiest when I say no. He's been worrying for a month now when he has to go to the doctor. This is a new one. He worries constantly about going to the doctor.
I have a need to go somewhere before the winter sets in. There are some health problems in my family and I want to go away and have a "rest" before things get worse. We talked about it this morning. I asked him if he would go with me for just a couple of days, someplace familiar. He seemed receptive to doing so. Today. I don't know how he'll feel tomorrow, but I think I'm going to make reservations and do it. I feel the need for a change of scenery, even if it means more work for me. I don't have to put him in a wheelchair, which is what you have to do, so hopefully we can go and have a nice time. I know this will be the last time we do this, of this I'm certain.
I sit for a bed bound hospice patient. His wife rented a movie and invited me over for a very simple meal and movie. She can't get out easily but still tries very hard to be with people. She could have been still in her jammies and I wouldn't have noticed.I think it is vital to not become the second shut in.
I have done all the driving for the past 10 or more years, due to Allan's MS. Once he retired, he pretty much stopped driving. I enjoy driving - much more than being a passenger - so it hasn't been a problem. We haven't been on any long road trips since our grandson was born almost 4 years ago - at that time we took the Auto Train to Virginia, then drove about 7 hours to Ohio. It was an easy drive once we got out of the D.C. area.
We go out a lot - small errands or out to eat. I try to time what we do so that he uses the bathroom at home right before we leave.
Now that DH is in a Nh, I do have more time to myself, but it is lonely, especially at night time and on weekends,,,everyon'e a couple on weekends. I spend my time quilting....losing myself in my sewing, I belong to a quilting group and an embroidery group, we meet every week...the groups have been a great support to me. They ring to see how i am, we may meet for coffee...i don't know how i would get through these days if it weren't for them. Also now I'm having to do anything that needs doing around the house...relayed brick paving yesterday that had sunk...watching and helping Dh all those times sure paid off....he would be so proud of me. I take DH out for lunch...we go to the same shopping mall that we have for years, each time it's like he's never been there before, There are days when I could just steal him away and bring him home...but...
I think groups are great! When I got divorced - years ago - I was so lonely. I hated weekends - same reason - everyone's a couple. But I joined a church group of divorced and separated people, and I got out of the house a lot more.
RIght now we have an aide on weekdays while I am working. I could engage one for 4 hours minimum on Saturday or Sunday, but I know how much Allan likes having me home ... so I haven't. Also, I hate the idea of having to go out just for the sake of going out!
I'll read others views later but Joan you are right on right on....and I have been in big time earthquake quality rebellion these days..and angry as all h&*&# too. I am rebelling at having to do everything for the house, from taking the trash to the curb to making appts to get the gutters cleaned, furnace checked, electrics done...just tired of having to make all the decisions myself..with no input or help ......can't trust ALZ judgment! And then there are the holidays the kids are all taking and hearing about it on FB...makes me want to scream " when are one of you kids going to volunteer to come take care of YOUR dad so I can have a break? Why do I always have to beg?" Yes the isolation from friends and now even family is deafening.
And as to dinners out let alone dinner party for other to come...I have all the work, no help and I am already behind..maybe I should tell them to bring the brooms and mops and they can work for their supper..HAHAHAHA. That would be a switcheroo....
Going to the flicker box ( movie) when he can hardly walk up and down those steps....and then doesn't recall what we just saw so can't even talk about it on the way home..what are they nuts..maybe some well meaning friends need to see a shrink! Yes I agree the deeper we get into this disease the more isolated we become and not by choice...we are discarded by others who '" can't deal with being around sick People" so they stay away...or drift off after promises to come around to visit...yeah sure...we learn to take none of this to the bank..this sort of coupon will bounce like a bad check. And so we are faced with chores upon chores and when we have half a day off, and we know we should be doing something that really does need done, we or at least I shuck it off and say what the hell...the mess ( or whatever) was here yesterday and since no one calls anymore why bother...and so it grows and swells and we simmer more and more in our lonely hours.. Strange when we look forward to those few minutes of sane conversation even with the pharmacist or cashier in some store....for a few fleeting minutes we are in a normal world,doing something that once upon a time was a shared chore done as a "Honey Do" by our Honey who can no longer do the Honey Do List things at all.....
On the FB I suggested the them for us in the malestorm of this Journey that we did not buy tickets for but find ourselves on anyway, should be the " Memories" as sung in the film " The Way We Were" not because we broke up with our LO but because that other man/woman moved in and made 3 in this marriage...and now all we have are those memories in the corner of our minds, those misty, watercolor memories of the way we were....
I am mad as hell and don't want to take it anymore but I have no choice...we are in for the long haul.
Mary..you said something important...to the effect everything is an effort even when it comes to doing something for ourselves..you are so so right.
I have been so tied up in HIS needs for so long and I have put myself on the bottom of the heap. I am now 5- lbs to chubby, and lord knows what my cholesterol and BP must be now...the clinic I was with ( military) made it hard to get an appt and once 65 you are pushed out if you live X miles away from the clinic which was hard to get into in the first place.
So for the last 2 years I have not gone in for a tune up...just the little things..well at least that was something..but...not overall good. So today, I went into a doctor's office, a different kind of office and felt at home as soon as I walked in..it is not one like you normally go to..it is one of those Concierge doctor's offices..There is a membership fee and she does not take any ins..but for things you go to for say blood work or m'grams etc your ins is honored....would be anyway...you get an appt for 30 min to an hour Imagine that! This doctor is a lady, mom of 3 kids, and keeps her practice small..makes house calls..what is not to like?? It is the first time I have been excited about anything is a long time. I even got a tour of the whole facility! Is it clinical looking? Nope..has Victorian furniture, lovely room, receptionist area has a warm fireplace..it is in an older home...the exam rooms are huge! nice decor and furnishings...all follow up visits are included in your membership...and she offers other things not part of the membership if you so desire..pretty comprehensive. Makes me feel like this doctor really listens...so I'' book an interview appt with her and go from there but after looking into so many clinics here and finding docs have moved on..what if you get a doc in ABC clinic and he or she then moves on and you are stuck having to find another doc if you don't want to have to be a camp follower?
So you did bring up something important and that has to do with the exertion we have to put into just doing something for ourselves that we so richly deserve..it is just more decision making and we have so much of that already. It is draining!
Bev, I am not sure what stage this " Are we going anywhere" question comes up..I get " Do I have to do anything tomorrow" and tomorrow comes and it is " Do I have to do anything or go anywhere today" and that question comes up several times...but this is something we don't talk too much about but I wonder now how many others have had this particular question posed over and over and at what stage did they find it pop up?
The point you make about the importance of socialization is one of the reasons I wrote the blog. I was questioning whether I was isolating myself too much.
In my case, it's a fine line between isolating myself and rebelling against having to do everything (EVERYTHING!) for someone else, even it is my husband, and doing something I want to do. FOR ME. So on weekends, I rebel. I do what I want to do, which currently is basically nothing but knit and watch TV. It's restful. I still have to wait on Sid, but I don't have to drive anywhere.
I do socialize at other times, but lately it's been on my terms. With the people I want to socialize with and when I want to do it. Geez, this damn disease has made me very self centered, and I don't even care.
I always hesitate to join in the discussion because I feel like Bunny and I are still in the beginning of it all. But I get those questions all day long. We go to a special gym three times a week and every day, many times he asks if today is a gym day. A lot of "so, what's going on today?" And "what's happening today?" My son has started to come over twice a month to stay with B. to give me a little time alone and he heard B. ask over and over, "so what's going to happen? Where are you going?" The questions are constant if he has a sense that something special (well, any planned thing really) is happening that day. I have decided that it's just him worrying and stressing, so I just answer him every time as if it is the first time.
And Joan, I so understand the rebellion. The tiny bits of time I get to myself seem so insubstantial to my need that I find myself snubbing whatever I can get. My rebel says "if I can't have what I really want (endless time alone, my husband's mind back, a life, a future, etc.), then forget it!" I feel like I don't have anything good, interesting, or hopeful to say to anyone, I don't particularly want to fake being pleasant, and I'm not very interested in listening to anyone not in my situation. Does not make for a great dinner conversationalist!
But my therapist shared a handout from a conference where the speaker talked about caretaker "psychotoxic contamination," and I realized that I absolutely have to get away from caretaking as often as possible. He says it's not just that you spend energy taking care of your spouse, but that you EXCHANGE energy, too, which can be destructive to the caretaker. And B. can be very negative. I call it his "blight everywhere" attitude. I do feel poisoned sometimes by that negativity and getting away from it gives me a chance to replenish my shields and remember that I'm a separate person with a right to a life, too. And in turn, I find it easier to answer the questions every time as if for the first time, and to be able to show more compassion, kindness, and patience. So now anytime I have a chance to go out by myself, I take it, even if I just go sit in a park, even if I just sit in the car for half an hour.
Joan, I too have learned to knit..no where near as good as you are but like you, I find it to be relaxing, even when I goof it all up and have to start again..I am basically a beginner....all I can make right now are scarves...good way to learn stitches...A good yarn shop is better than a Godiva chocolate shop any day..
Today I'm feeling very sorry for myself and "indulging" by reading on this message board. I had made arrangements for dh to be at adult day care today and I was going to a ladies Bible study at our church. It is an interdenominational, intercommunity groups that has met for several years and I have never gone because it is the same day as water exercise. But this year I felt this might be better for me. Well, last night dh got up at 1:30, got dressed, ate cereal, and got in the car to "go to work". He has keys but they don't fit anything. But of course I couldn't sleep the 1 1/2 hrs. he was up turning on lights and moving around. I stayed in bed but had to listen to every move. He finally came back, undressed and got in bed like nothing had happened. He awoke again about 4 a.m. but I convinced him to come back to bed. Well the next time I woke it was 8:30 the time for the study to begin. So all my planning to have a day for myself is down the drain. I don't know if it is worth it or not to try to get out. What the heck, just let him do whatever and my time will come if I'm still around when he is gone. I was asking men from our church to come stay with him while I did errands, etc. However, they aren't prepared for the change in their friend. Of course he says stuff that doesn't make sense - what? they didn't know he had az??? When it got back to me some strange things dh had said to one of these guys I knew right then I wouldn't ask any of them to come sit with him. Why be embarrassed by that? I don't know how much longer we can go to church as dh can't stay awake because of the a.m. meds he takes. I do have a son who will come stay while I go. But then he only has weekends for himself so why take his free time away. His dad isn't his responsibility. I'd like nothing better than to sew. I've made "memory quilts" for my three grandkids and "t-shirt quilts" for my sons. I could spend hours in my sewing room - which dh built for me many years ago- but I find I'm too tired these days to even go in there and it is a mess. I'm dealing with frequent "melt downs" by dh. Having to try to avoid that and protect myself. Yes, make all decisions and finding anyone to do anything is time consuming and frustrating. People may be out of work but I'm finding it hard to find anyone who wants to work. pity party for me, sorry .
Time off here and there and protecting some little things for ourselves is critical. Even if that's only in our minds. I've been here twice already and couldn't say what I wanted.
Joan, a break is different from later like night and day. I loved my respites and my outings when someone else watched her. It was like a holiday. But when she went into a NH it was different and it has stayed different.
Every last thing that you have going for yourself (the real you) is going to help you later when there's no end of time and life's not constantly pushing you 24/7. Hang on to that 'selfish' idea. The knitting. Whatever they are because while I sleep when I want, go out when I want since the Westmount is watching her 24/7 now, I am also facing just myself. And while some people may find it easy to adjust some find it terribly hard. All I know is that it's different and like a babe lost in the woods, I have to find my way to a new life I don't want but have no choice in.
Every interest, activity, mindset, contact, and thought come into play while the realities of what has happened to me and where I am sink in deeply because there wasn't time before and now there is nothing but those truths.
This isn't about me. Everyone is going to go through this. The day will come when any selfishness you feel is going to be like a lifeline to your future. At least that is what I am learning.
I too experience not wanting to take my wife out as much as we used too. She's in a wheel chair, in a childish state and always wants to go shopping. Just like a toddler would, she want's all the childhood things in the store. So we don't go out much, I try to limit her trips to Church, the Doctor and once a week to look around a store. I feel bad about having to cut back on outings, but I work from home and trying to work in more time to go somewhere just isn't feasable. My older daughter takes her out some when she can and that helps.
I have my computer games for relaxation while I sit in the MH. My 18 hours of work for our site is my time in the 'other' world. As the season comes to an end and we move on it is depressing to think I will not come back here next year (unless we are not a good fit at the new place). I have gotten to know some of the regulars pretty good and are richer for having known them. Many Art will stop by and chat with while I work and they seem to have no problem with his forgetting or repeating.
I do tend to stay in the MH except for work or when we go walking around the park. In fact, if I don't have to do shopping the only time I leave the MH on my 3 days off is to do laundry. However, I find I often won't get up off my fat backside cause I don't want him to go with me. I miss going to the store alone, just having alone time. I read a post on FB (which I can't find) from the person with dementia about the stress of not having their spouse in site, whether they will make it home from work, etc. I concluded that is why he wants to go all the time where in past life he didn't. I hate taking him shoppin at Winco where you bag your own groceries. I like to put like things together, especially things that need refrigerated. Now that it is hot and we have a half hour drive home so it goes in the ice chest, even more important. He understands the concept of like together, but when he bags can't remember.
Flo - do not turn down your son's offer. He may feel honored to do this for you. By refusing you could be robbing him of a blessing. If you feel bad about every week, how about schedule 2 Sundays a month for him to come watch his dad? ;As for falling asleep - unless he is hard to wake up, don't worry about it. My mom worked graveyard but made it to church. Of course she sat in the back and snored through the whole message, but no one ever complained. (we sat way up front to avoid the worst of embarrassment).
I do have hopes that once the house in Massachusetts is sold I will have the funds to afford Curves for a while to see if I can work off some of this 'post AD weight' I have put on.
I tried to build a friendship with another AD spouse but it didn't work out. But, that is life and it will not stop just because my spouse has AD.
Regarding isolation I totally agree with you. I rarely go out except with an event with my adult children so I do not have to drive. I hate driving everywhere. To me it is a chore also. We never were a very social couple before Alz set it so we never really lost friends. I have decided that I am as isolated as I choose to be. I found two knitting groups that I attend weekly and that does more for my overall wellbeing than just about anything. Here we share a passion in common and talk about normal things. It provides me with the normal socialization that I most desperately need.
I also work from home so that occupies me during the say when I take him to the senior center or daycare. I exercise every day and find that is absolutely necessary for me to stay sane. I went to the doctor yesterday and he offered me more anxiety meds but I turned him down. What I need it just to talk with normal people.
Some times I do like to stay at home in my pjs and just read or mess with the computer. This is usually on days after I have driven around a lot.
I have to keep an eye on my husband since he is very active and rarely sits down. But I have "Bruce - proofed" my house, so he can go anywhere he wants and not get into trouble. All meds are in a lockbox and cabinets have childproof magnetic locks. I also have double-keyed dead-bolted doors. I did this to make my life a little easier.
He goes to day care three days a week and those are a lifesaver for me. I do a lot of driving on those days (10 miles each way), but the respite is worth it to me. I visit with my parents every Wednesday and we go out to lunch and I help them and my grandmother (who is 99) when needed. My husband does like to still go out and we usually go to the mall to walk around. He has FTD and is nonverbal and doesn't understand most things but I still like to do things that he enjoys. He will bring me my shoes to let me know when he wants to go out. :)
I have no problem going out to eat by myself or to see a movie. These things I do while he is at day care. I really have no one to watch him, even though I do have two kids. My daughter would watch her dad, but I don't trust him with her. She is a little thing and he doesn't listen to her. He has knocked her over trying to get at some sweets. He listens to my son but he has been working in Alaska this past summer. He is due back at the beginning of September and I have all sorts of plans for myself to do while he is here and can watch his dad. Our daughter is getting married at the beginning of October and with my son here I will be able to enjoy getting ready for it. But, our son leaves for a new job in the middle of October to China, so I'll be back to being on my own.
Sorry if this doesn't make sense, I know it's a bit of a ramble. I think what I'm trying to say is that I want to go out more, but don't have the opportunity to do it.
I really need to insert my 2 cents here on 2 points.
First, the word "selfish" has a negative vibe--being selfish often means claiming attention, goods, activities, etc in utter disregard, even to a point of harm to others. it is not selfish to need and/or take respite; it's "self-preservation". If we, Caregivers, do not take care of ourselves, who is going to take care of our LOs and us?
Second, the earlier, and sooner we bring help aboard, the better for both our LO and us. Our LO will adjust to others in the house and them helping our LO. There is so much on our plates as Caregivers, that only we can do, that we have no business logging time on the more mundane tasks. Lighten our load and we can do a better job on the things we have to do. Wit4h hel;p on hndw, self-pr3eservation t4ime is easiwer to claim.
CO2 - we were like you, not very social. We chatted at church, Bible study, work but we rarely went out to someone's house or with others. We did it just the two of us. Maybe that is why couples like us have it so much harder.
Just call me "hermit" and I like it. I spend time wandering around in the forest by my cabin with my dogs. I work 2 shifts...one is 24 hours to keep my benefits. I have little hobbies...fishing, kayaking, gardening, canning, ATV riding, glass blowing and lampwork, cooking and trying to fiqure out how to live off the grid...that keeps me busy. I go to town only when I have to and look after him. He is a putterer so he is still semi independent, stage 4-5. My neighbours are the type that we meet on the gravel road and chat but mostly we mind our own business.
My favourite peom:
O solitude, the soul's best freind, How calm and quiet a delight It is alone To read, and meditate, and write, By none offended nor offending none; To walk, ride, sit, or sleep at one's own ease, And pleasing oneself, none other to displease.
Have to agree that I don't feel like having company either. My guy becomes confused for hours when we do, even with our own children. I used to take him to dinner, or to a family gathering, but it got to be so difficult. Not as much for the difficulty with the physical effort, but it was just not enjoyable for him or myself. It seemed to also make everyone uncomfortable, (maybe just my insight) and of course, someone always had a well-meant suggestion for me. (they hadn't a clue). Since it became such a chore instead of an enjoyable or even wanted experience, I just cut way back on that. Truth be told, I have made this effort for so many years, and I am now just exhausted, mentally and physically, and need to save whatever strength I have to continue to care for both of us. After all, it is also my time to decide how to spend. Sometimes the path of least resistance is the most beneficial to those who have expended their all. (yet still have an unknown path to follow).
Yes, social contact is important. I'm not denying that. Over the last years I have made every attempt to keep my contacts. This disease just takes such a toll, that exhaustion and the need to survive just takes precedence. I had no idea this experience would have progressed as it has, and apparently may have a long way to go. I was told by his Dr. that he would have passed on by last year, but seems to be ready for a long trek yet. Just don't know what to expect, am out of gas, and coasting. I just wonder how far. Hang in there, Joan! So much 'well meant' advice. Ya just have to go with your gut. Only YOU know what you can handle, or are comfortable with. My heart goes out to everyone of us who struggle with our own situations.