Tuesday's Blog is about becoming completely enveloped in the world of AD. I invite you to read it and post your advice and opinions here. At this time in our lives, is it possible to live in both worlds? I thought it was, but I am finding I cannot.
Joan, I continue to do my best to live in both worlds... I find for myself I can,t get to far to the sad side because I tend to get depressed ,, It all saddens me to think of what it all ( retirement ) was supposed to be because we got a taste of it for a few years.... I think that you are so involved with not only your own personal AD situation,, but have so many other contacts outside of your AD world ( even though its AD related )that its possible for you not to be overwelmed by it.. ( I hope that makes some sense ) and that being said the rest of us only have our own world of AD to contend with, therefore at least for me I,m happier living in both worlds............. Dan
Since I do not have family and really no other support, AD is my world. I have to be with DH 24/7. Well I can leave to get groceries or pay bills. However, I won't be able to continue like this. It was suggested that I attend a support group, which is an hous drive. If I could have four hours on my own, the last thing I would want to do is go to a support group. A movie would be nice. My opinion, don't let AD become your world if there is a choice.Joan thank you for this site, it keeps me sane.However I expect that AD is your world since you are so involved with helping us . lobbying, researching etc. Thank YOU.
Today is a good example of living in both worlds. This morning I had to give DW her bath and get her dressed and then get breakfast. Then we (both of us) went to our church for bible study, followed by lunch at a local restaurant with another couple from the bible study. In a few minutes a "baby sitter" will arrive to be with her while I go to the support group meeting. Then this evening we go to Rotary. She has been going with me for the past couple of years, and this past winter they made her an official member. On other days we have other activities that get us both into the "real" world - Church, activities at our retirement home, trips to our "camp", etc. As long as DW is able, we are going to continue to do these activities. We are planning a bus trip to Quebec, following the route taken by Benedict Arnold in his 1775 attempt to capture Quebec. I hope she is up to it. She has been getting very tired lately.
Well, it depends. If you have enough money for live-in help or a facility, you have time to play bridge, see shows, take classes, etc. If you have to work, that's another scenerio. I had often worked, always volunteered--happily gave it all up and just moved into staying home w/DH and for a long time, he was fine--we were fine. As time went on I began researching, trying to find out what I was dealing with. This was 1993, not much was available like it is today. He got worse, I got older and had to place him. Eventually I wrote 2 books, both on this site (When the Doctor Says Alz & Alz Surgery- an Intimate Portrait). It's never easy having your heart in a meat grinder, but otherwise, I just went along with things living in limbo. Didn't move forward, backwards or do anything except be w/DH. I'm a stick-in-the-mud homebody anyway, so no socializing, weddings, parties, etc. Eventually I began answering questions on AD boards and now write a column about AD for Today's Senior magazine, also on this site.
I am not as all involved as Joan, too old for that now. I keep trying to back off but it's like I'm addicted. I quit for a bit and then go back to a couple hours a day on the computer giving advice. At a class reunion last week a man whose late wife had MS is very busy w/the MS organization and we talked about how it can get under your skin even after they are gone--at least for some of us. Then, too, I really don't have all that much to do otherwise. Don't have to work, children are grown, don't want to take classes, play cards, travel, etc. Done all of that. I have a 'friend', I'm remodeling my bathroom, have family nearby, but AD is always there, I sometimes think if I put it aside, it's like putting aside my DH and I can't do that. His travail has to have mattered.
But I know how it happened w/Joan. She just put her toe in to test the waters and found it was quicksand. Been there, done that, wrote the books. I can only say at this point that I'm glad she did, she's making lemonade, it's not easy and, no, for many, living in both worlds is not a viable option. I will say that I have no regrets. If circumstances were the same, I'd do it again for DH in a heartbeat.
When my former spouse was ill and then deceased from cancer in 1996 it was different. His mind still worked, but I was still pretty much homebound for a bit of time. This is different for two reasons - it is a mind disease and I am older. I am rarely away from my DH, and when I read about the Caregiver cruise and considered I might not be able to go with my spouse I realized I would never leave him for that amount of time. Life is so short and for now I am a part of this process. My husband is very dear to me and I want to do what is best for him. What surprises me is how much age makes this different. I don't have the same level of coping or endurance. It is hard to get a good nights sleep, even though my DH isn't what keeps me awake. I guess it is just the stress of seeing this long thread into my future. I worry that I may not be compitent (I surely wish this site had spell check!) to totally mange our lives. I think we said 'for better or worse' in those vows before a Judge - but don't you wonder how bad can it get?
Hmmm...I think I'm one of those people mentioned---sometimes I just get tired of thinking/talking/fretting over AD, and I step out for a while. The reason I can do that, though, is because my husband--though unable to work or do much effectively--is not unsafe to be left alone, and can pretty much go anywhere with me without causing difficulty. Who knows how/when that will change? Also, I have kids to contend with, ages 16, 18, 20, and 22, who are in and out, and always seeking my help with one thing or another, so I have to be in the world of the young. I see my sister and her very young kids (1 and 7) frequently, plus some nephews and a niece on my husband's side...so I really have a life full of all ages and stages. So I think the sense of being thoroughly immersed in a world of AD is going to be stronger in someone whose social contacts are more limited. But additionally, Joang would feel that way because she has, essentially, made a new career out of this website and media and legislative work pertaining thereto. Likewise, anyone who devoted herself to a specific condition or cause is going to feel that way at times. (But do know that it's appreciated. I'm sure you do know that.)
We do our AD stuff. We go to Georgetown University and have our vaccine study appointments on a regular basis...but otherwise (except for finding myself more independent than I ever wanted to be, and in charge of EVERYTHING) we live a fairly normal life of seeing family, neighbors, shopping, errands, and the regular trips to deliver a kid one place or another, or help 'em move into a dorm, or whatever.
You have a good point that I had never thought about. Since my son and daughter-in-law live 3000 miles away in San Francisco, I don't get to be involved much in their lives :( . My sister is in Chicago; my parents are in Rhode Island. Sid has one cousin in Massachusetts. Not a lot of family comings and goings around here.
As I said in the Blog, I love what I do, but I need to find a way out occasionally- something to do that's not AD related. I used to tutor, but that business is just as bad as every other business in this economy.
I no longer have my husband at home which makes a difference in my estimation as to the extent I can be involved in non AD activities and interests. Also when he was able to communicate and interact somewhat with others I wanted to be with him and was involved with him to the exclusion of my own life involvement. I now am trying to "let go" of my emotional atttachment to the life I once had and am building a life as a "widow" . I have been venturing out t o go on trips to see my children and their families. Also I am now booked on a trip with friends to MExico to an all inclusive vacation spot. I miss my husband so very much especially when I engage in activities that always included the two of us. I really feel I have a responsibilit y to live life for him now that he is deprived of the life he once enjoyed. I am finallly adjusting to this life although I always have an underlying current of sadness without him.
Joan, for a while I worked with a group who taught reading to functionally illiterate adults. You say that the tutoring business is bad right now, but would you want to do something similar as a volunteer?
I find this topic so interesting . I have been in awe of some of you who can not only live with AD , but then read about and study about it. And you Joan amaze me in all you do. I am unable to immerse myself in the ways that some of you are able to do. I'm probably not saying this well. But what I mean to say is that living it daily is about all I can handle. I still work outside the home and will need to do for awhile longer.
My husband was never very social and always preferred solitary hobbies like fishing or photo taking. I was the one who joined groups and attended church and church activities. Slowly I have given up those things....by choice... while my husband still knows me I want to be there for him. I am either at home with him or at work.
I don't think its denial , I really do know that things can and will get much worst, but for now I want to focus on the skills he does have. Sometimes reading all the posts here, and lately there have been many that are so sad, I have to think more about the future than I want. When he was first Dx I read and read , and then I realized I was grieving over things that had not happened as yet. I"m trying not to let AD swallow me up as yet....
I think the strength that some of you show , studying about AD, writing, lecturing and getting the information out , while at the same time dealing with AD is truly monumental.
I agree with you, I am amazed that some can "give" so much to AD, their time, energy, thoughts. It's just more than I can/will give. I, too, work outside the home, not only for the income, which we badly need, but to also keep my own sanity. If I could not walk out that door every morning I would truly lose my mind. I just spent 4 days at home with DH beside me every minute, not remembering what I said, not being able to carry on a conversation, not remembering what he said but always talking to himself, and I was oh so happy to get into that car and drive off this morning. I am a bad person, I know, and an even worse caregiver but that is the only way I can handle this situation. Yes, I worry about him being there by himself. So far he has not set the house on fire, or tried to fry the dishrag (as the mother of a friend did), and for now is able to pick up sticks and clean out a fence row. I don't know how long this can continue until he needs to be placed, not only for himself but for me as well. Does this make me selfish? I don't want to be. Take care!
I love reading everyone's comments. I always get so many different views and opinions to digest.
Sunshyne,
At this point, volunteering is not an option. I need a job. We were both forced to retire too early - Sid because of his illness; me because of a complicated education law that wouldn't allow me to work with the license I had for umpteen years; so the plan was for us to move to Florida - better quality of life; better weather that enabled Sid to get outside all year round; and for me to get a job. So far, we have all of it except the job for me.
Sthetford,
Which brings me to your comment about enjoying getting out to work. I would LOVE to have the stimulation and respite from AD with an outside job, and believe me, I need the job, BUT I'm so used to making my own schedule and hours, that it will be an HUGE adjustment. Now if I could find a job for 2 days a week that would pay me the full time salary I was making when I lived in Massachusetts - well, now, I would grab that! :) The odds of that happening are about the same as me waking up tomorrow as a size 2.
You are NOT a bad person just because you can't stand "home with DH beside me every minute, not remembering what I said, not being able to carry on a conversation, not remembering what he said ". That drives me CRAZY too. It makes me cranky, impatient, and sometimes kind of mean. Being away from it for awhile, makes us better able to cope with it.
I worked a year too long. Didn't realize how badly hubby was doing. He sure did cook some strange things in the microwave. I would come from Work tired and then have to deal with a mess. Even leaving a simple list of food to eat and running the dishwasher didn't help. It's hard to be patient when you are exhausted. Even when Bill was hospitalized my pager was going off with constant questions from the staff. I soon learned that I knew more than they did from their questions and he was in a psych hospital. It's amazing how little health care workers (an I am an RN) know about dealing with dementia. After I quit the job I loved I realized I would have to place Bill for safety reasons. It is now a year later and I am still healing.
I am so with you on this one...It's so wearing to have the clinging, questions, crazy statements, looking over and over for the same thing...it drives me nuts. I am determined to have a life outside of AD as long as it is possible. I have met a great friend through my support group and it's good to spend time with her and her husband since I don't have to worry about what inappropriate thing my husband will say. I hope I can continue to afford to pay for caregivers because I can't leave my husband alone for more than a few minutes and I have to have a break. It's so much more relaxing to be able to leave him with someone and know that he is being cared for----I really forget about it for a few hours and almost feel "normal" again. I get a terrible feeling of dread when I'm on my way home...he's getting worse fast and I just never know whether he'll be nasty or overly loving or simple confused. But whatever it is, he sure isn't the man I married and I sometimes feel really trapped into taking care of someone I don't even know.
I spent almost 9yrs doing nothing but caring inhome for my AD husband. in the early yrs i would rant/rave right along with him asking the 'why me'..when the incontinence issues started a couple of yrs ago i thought i wouldnt make it thru this part and then i finally made the best choice to hire an aide thru the local agency to sit two days/week with hubby while i got out into the normal world. still at it and doing as i want those days out, its the only thing saving my sanity thru it all. when the time comes DH declines to need more care i will most likely hire fulltime -it seems to be getting closer and closer as time flies. divvi
When my husband was first diagnosed with AD, I talked with work and found out what would happen with my pension and medical benefits if I had to stop working or chose to go to working part time. We took those numbers along with the numbers of what we had saved and looked at the long term. We also looked at what would happen to me if I had to be out of the job market for any length of time caring for him and realized that technology is changing so fast, being out of the job market would mean not being able to find a job in a few years without some serious updating of my skills. At that point, we both realized it was not a good idea for me to leave my job. He also stated at that time that he did not want me to stop working because of him.
Honestly, even though I was often exhausted, work has been my sanity. It was that bit of normal in an insane world while dealing with him when he was at home. Now that he has been placed in a SNF, it is still my sanity and stability.
My whole life as I knew it changed. We used to go out all the time with friends and that could no longer happen as he got worse so those friends have moved on with their lives and I am still living in an AD/Work world. We would golf together and often went places just by ourselves. None of that really exists any more.
I see my husband just about every day. He is 20 miles from our home (30 minutes by car). Even doing that has affected what I can do for a social/normal life. I am still planning my life around seeing him on a regular basis. Recently, I realized that I had to give myself permission to not see him occassionally so that I can go out with girlfriends and see a movie or something.
This a subject that has been on my mind for a while. My dh has been in care since December. It has taken this long to get things settled for him and he is content with his home. I too live 20 miles from his home, and I go see him every other day and usually call the off day. Gas prices are one reason I don't go every day. The problem is how to get my life back on track in a non AD world. I have spent 7 years taking care of him. Most of my friends are married, but I do see them some during the day. For the first months he was in the home, I spent alot of time getting him settled and into the right place. After the stress of this, I became very depressed. I finally asked the doctor for an anti-depressant and I am now feeling like my old self and ready to find a life again, while taking care of Ralph. How hard is that? Not easy at my age, but am working to reach out for new things and new people. You do have to give yourself permission to move on. But it is difficult and I know it is up to me to broaden my life outside of Alzheimer's.
For a while, when Dh began to go downhill, I think I was in a daze, and I stopped doing everything else. I realize now that I'm doing no one any favor by doing that. I had been in a quilt group, but I had not gone in a long time, and had not even been quilting at home. Then I realized that there were babies being born for whom I had not made a quilt, and it was time to do what I enjoyed again. Well, I've gone to my group, left early, but I did go and I've beun to make quilts again. I even went to get my nails done, which I also had not done for a long time. I admit, I was not doing stuff for me, and I resented it. he doesn't want me out of his sight for too long, but hee does OK for short periods, and I'm a better caretaker when I return. Eventually, I'll need to hire someone, or something. He has no interest in goign to day care, and he sleeps a lot, so I usually run out when I know he'll be napping. I come to this website, and to the ALZ website. I read a few of the books, but I cannot immerse myself in Ad, I need to free my mind, or I'll lose it.
My husband is probably at the same point yours in at. He is OK if I leave for a little while, but doesn't like me going and doesn't approve of me going out. I know that I need to get out of this house for a little while every day, so I'm trying very hard to do that.
Next week I'm going to the sit and stitch group I started. It has survived without me, but it is more than time for me to go back. The last few weeks there were things going on in addition to my husband's problems but next week is clear. Somehow I'm going.
Everything I read says that what I was doing, which was isolating myself, is not a good thing. Not good for me and not good for him. So I'm working on it. I went to the library today. I'm not sure what I'm doing tomorrow, but I am doing something.
I expect to start over with new friends when that time comes. One thing living in a motorhome teaches is the ability to make instant (and sometimes lifetime) friends. I don't expect to be able to step in to the same stream twice. For now I don't have much opportunity to be with others, so this site works wonderfully for that. I remember hearing that AD patients like art, so we've been going to museums more. Today my DH sat down and struck up a conversation of sorts with the security fellow, who is probably bored to death anyway. Things like that have become my 'respite' these days - I probably had 10 minutes to stroll around that area, which seemed like a gift! It was funny when we left how he told another security staff how impressed he was with this museum, one of the best he's been in! Good thing they don't know he's been all over Washington DC and the Met! Whatever, being there confirms that this continues to be pleasurable for him.
I reminded myself today when I was driving to the library, that THIS was respite. This half hour in the car and at the library alone. When he went into the barber shop, and I stayed in the parking lot, I walked around and around and around and reminded myself, that this lovely morning in the parking lot counted as respite. If I see a beautiful flower I count up the joy.
And you know, ever since I started forcing myself to NOTICE I've been feeling better. I think I'm going to go and play with Photoshop for a while.
I also just spent 5 days at home where I was the caregiver 24/7 and ended up being very depressed. This is the first year we will not be going with our friends on a guys golfing and girls shopping weekend. We have done this with 3 other couples for the last 25 years and alternated on going over Memorial or Labor Day weekend. They asked us to come but my DH's incontinence is getting worse and I don't want to spend the whole time worrying about bathrooms and him having "accidents". We've finally switched over to Depends as the normal daily wear and it's a big adjustment for him and me both. It's seems like such a final step in the process. I'm still working, mainly to keep myself from being totally "sucked" into the vortex of AD and also, to keep the cost of our health insurance down. I have hired someone to be with my husband while I'm at work but constantly worry that she will give up on us and I'll have to quit working. Has anyone considered "out of country" care? I've read on the internet of people moving to Mexico or India where in home care is much more reasonable.
I spent the winter in Mexico. We had been doing that for 18 years. It was much easier there. We had lived in the same complex for 10 years and knew everyone. Everyone knew our situation. I was able to go to the pool and chat with people. Friends came to play cards with DH or just to visit so I could go out.Its easy to get help and inexpensive. The average for housekeeping or caregiving is about $3/4 per hour. That is a really good wage so the person would be reliable and careing.We had the same housekeeper/caregiver/ companion/ friend for ten years.But its too difficult to travel now and the cost of health insurance is high due to our situation.There are many ex patriots so it is easy to make friends and one feels quite "at home".I was in Vallarta. The same is true for San Miguel, Lake Chapala, Guadalajara. I don't about other areas but I'm certain Cabo San LUcas and the Baja are OK too.The cost of housing ,rental or buying is increasing. That may change as fewer US folks are going there due to the economy.It was a much better life style. I'm very isolated here but that will change in August when our house sale is final.It is quite possible that everything will change for us due to the anger.
Since we tiptoed into stage 6 ,,,there is no way to survive except to join the AD world. It was the only way I could really help my husband...I had to feel what he was feeling and not be distracted by the so called normal world. It is lonesome in here but it works better for him , ergo for me. Just wish this was not such a long long journey. Lilypad
Welcome to my website. You will find a wealth of support and information here. When you get a chance, please go to the home page of the website - www.thealzheimerspouse.com - and scroll through all of the informative topics on the left side.
Hi Lilypad, Welcome to this site although it isn't a place any of chose to be. I know you will find lots of help, support and love just as I have. Without Joan and this site I think we would all be floundering around trying to figure out what is going on with our loved ones. Love and Peace.
Welcome Lilypad. Like Jean21 said, "It isn't a place any of us chose to be" but this is what we've been given and we're all trying to deal with it. This web site really helps.