My husband has been in assisted living now for just over 3 months. I have found that I am really struggeling to figure out 'what my life' will be right now. I had been taking care of him so long and my whole world was consumed with AD. Now that I don't have to take care of him every day, I find that I don't have a lot of hobbies or things to do anymore. For those of you who have been here, how long did it take you to get a life back? I don't even know where to begin right now.
Diane, I would go read the thread for the blog of March 25th (I think) titled 'who am i' and start from there. I know it can be hard. After my hb's affair in the mid 80s I had to start reworking who I was. Then depression hit and I lost it all. I restarted in the mid 90s, was getting there when we lost jobs and started Workamping. Now this disease hit in 2006 and I am just going with the flow. I know when this is over in however many years I will be where you are. We haven't friends, no girlfriends - just sisters. Our lives have always been just us.
I will bring it to the top so you can use it to start and then please share with us your journey as you feel comfortable doing.
Diane I think your situations is much like mine with finding myself now, after being a widow for 3 1/2 months. I had also been consumed with AD. You will find many writings in the widows/widowers thread at the top of the discussion page, about coping with restarting your life. You still have your dh but not the hour to hour care you were having. Good Luck and it is taking time.
I recently discovered that the only topic of conversation I ever have is about Alz.... This week we had a family dinner, without my dw, but with aunts, mother, daughter, brother, nephew, cousin etc, and the only conversation we really had was alz. I am consumed by this, and want to talk about anything else....I watch other people and realize that they actually have a life....mine is only eoad, no matter where I go and what I do... I cannot wait to change the subject!!
This is an excellent topic - the "Who Am I" Blog is still on the home page - www.thealzheimerspouse.com- towards the bottom, and Charlotte brought the message board discussion on that blog to the top.
I'm with you Phranque. I have nothing to talk about except AD, or my parents' health problems, and I want to talk about SOMETHING ELSE. Sometimes I can get into a good discussion about books I have read.
Yesterday I had lunch with a group of friends -- we do this on a monthly basis and see each other throughout the month at other activities. I make a mental note before I meet them to keep my mouth shut except for asking THEM questions about their spouse/family/activities etc. This does two things: it makes me a good listener and thus a better friend and it provides me the opportunity to discuss something other than dementia. Usually somebody inquires of my DH and I tell them he's doing fine and we move on. After 2 hours with these dear women I am renewed and refreshed and able to come home to DH in a cheerful mood.
Good idea Weejun. Also, sets the tone for more interesting lopics. If you are with someone who can carry a conversation about more interesting topics. I have trouble initiating new topics anymore. I really really miss that.
I was just talking with my best friend about this last night. All I can think about is how lonely I am, how much new responsiblities I have, how will I possibly get it all done when all I want to do is crawl under the covers. It takes an extreme effort just to sit and pay my bills online! I don't know what to do with this new life. It will be ONE MONTH Already on Sunday! I still find myself picking up the phone to call him, going to email him a joke, etc. Today I went to the grocery store and had a panic attack. Starting over is tough, much, much more so than I expected. I know how TJ feels, I'm lost. Can someone come find me ?????
Susan, you are not lost...you are grieving.....it takes time.....it is a job......work through it and you will be fine. It hasn't been that long and you still had a "relationship" up until the very end. I believe that is why the job of grieving was easier for me....there was nothing, and I mean nothing, for years before my husband died.
One day at a time and you will regain your strength, your energy and your vitality...it creeps up on you....there are lots of people who love and need you....count your friends here in that number.
I swim once a week with a good friend and usually two other (younger) women. They always ask how I'm getting along and give me a chance to talk, which is valuable to me; they are genuinely curious and caring. But we also talk about our children and grandchildren, their jobs and concerns (one performs civil marriages in our village and always has interesting stories), vacations and travel, etc. etc. Also films and books; we are all avid moviegoers and readers. We also talk about THEIR husbands. Mine isn't the only one with quirks! Meanwhile we are swimming four abreast up and down the pool I'm sure to the great annoyance of many other swimmers. Some of them call us (affectionately?) the pool hooligans. Listening to them I'm often made conscious of how limited my life has become, but I'm very grateful for these two hours a week of normal contact and conversation.
I think when there is any major change in our lives we go through a phase of feeling lost to ourselves. We enter a void where what was is no more and we wake up to days with no schedule; no requirements; and we feel lost. I hven't lost my spouse, yet... but some years ago, I had to make the decision on whether to keep working fulltime or not and go on Disability. It was hard to decide--I saw it as failing for a long time. But it was put to me thatI had a limited pool of energy to use each day, and I needed to decide where it was most important to spend it. i needed to be a good Mom and Wife taking care of my family more than I needed to earn a paycheck. The first couple weeks were the hardest. I was lost. No set routine. Stuff got done, but there was no continuity to my days. I had to organize my days myself; do the planning and scheduling. In the process of becoming a stay-at-home Mom and Homemaker/Wife I found myself again--the same me, but with changes and improvements. When my DH leaves, I'll mourn and hurt and be lost for a while. But then I believe that same instinct will kick in and I'll pull it together, becoming a new improved me.
I tend to answer everything in connection with AZ too. This week I have gotten many emails and phone calls from friends out of state: I saw about Rhode Island in the news, are you okay?
Well, yes, we're okay. We were on the good side of the bay, away from the rivers which flooded, but we had a lot of rain, a LOT, and for the first time in the forty years we've lived in this house, we had some basement flooding, coming up from UNDER the basement through cracks in the foundation. The water level is that deep! And this means pumping and wet vac-ing etc - Andrew brought his wet vac over and I found a pump in the basement we'd never used, but the water keeps coming in. At least we're getting the basement clean!
But most of these people who sent notes don't normally ask, how's L.? My concentration this week has been on the flooding and frankly, it's rather a relief after so much AZ absorption.
I have been having thoughts along these lines myself. Even though my husband is in a facility and I do not have the day in day out care of him that I did before, he is still the focus of my life. I work full time and spend my evenings and weekends with him. Many people on this site often speak of a life "after". How has that worked out for some of you? I live in a rural area with little social life. I can't imagine "after" doing anything for me except leave a huge hole in my life.
I will read the other thread. Thank you. I don't remember seeing it but then again, I don't visit this site every day. I know it takes time and I guess what I'm going through is pretty normal. I hate it, but it is to be expected. We all know how bad AD is. Not only does it take our loved ones from us, it strips us of our lives as they used be. I've been grieving little every day ever since this disease hit us.
ehamilton, this is for you...............its by Lady Antebellum and reminds me of all of the people I love who support each other on this site. Arms around, Susan
May the angels protect you Trouble neglect you And heaven accept you when its time to go home May you always have plenty The glass never empty Know in your belly You're never alone
May your tears come from laughing You find friends worth having With every year passing They mean more than gold May you win but stay humble Smile more than grumble And know when you stumble You're never alone
Chorus: Never alone Never alone I'll be in every beat of your heart When you face the unknown Wherever you fly This isn't goodbye My love will follow you stay with you
Baby you're never alone
well I have to be honest As much as I wanted I'm not gonna promise that the cold winds won't blow So when hard times have found you And your fears surround you Wrap my love around you You're never alone
Chorus
May the angels protect you Trouble neglect you And heaven accept you when its time to go home And when hard times have found you And your fears surround you Wrap my love around you You're never alone
Chorus
My love will follow you stay with you Baby you're never alone
One of the reasons I spend as much time on Goodreads is that I almost never talk about dementia there. There was one short period when some of the people I'm involved with were reading and discussing a novel about Alzheimer's where I did correct some ideas that the people doing the reading were making - mainly the one about dementia not being fatal - and I'm open about what I'm doing with my life right now, but almost everything I post is about the books I'm reading.
So I'm doing that one thing that has NOTHING to do with dementia, and I spend a lot of time thinking about me, and not him, as well. It is my way to keep myself from going crazy.
A friend of mine told me early on to try and plan one thing each week that I can look forward too. In the last year or so I have made a practice of not bringing up Alz in the conversation or keeping it to a minimum. This has been so good as it opened up my world again as I was listening to others.
With my husband in a facility, I have also been doing things around the house to make it "my" home instead of "our" home. Some paint and a bit of furniture rearranging has done wonders. Even changing out a couple of pillows on the couch helped. I've traded out a few pictures on the walls and even rearranged some pictures on other walls. I love my husband and am so glad we had the life that we had but I refuse to let the disease take both of us.
Therrja, I'm doing what you're doing, except that my husband isn't in a facility. I've read quite a bit about NOT changing their surroundings, that it only confuses them. But, I simply can't always be thinking about what HE needs. This painting and some new furniture is what I need. "I refuse to let the disease take both of us." I'll remember that.