I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. Since Sid was placed in August, most of my blogs have dealt with my anguish and difficult adjustment to the move. Today's blog' is different, as it discusses the adjustment to caregiving freedom.
Please read the blog and for discussion purposes, try to answer the questions posed at the end. Those of you still caring for a spouse at home and those of you who have placed your spouse will most likely have different views and perspectives.
New found freedom. I guess it depends upon where you are in the journey. As hard as we all know caregiving is and as we all know how much we wished for more freedom from worry and stress, your new freedom is different from those who have the *. You still have some worries to be concerned with for Sid though he is in safe hands and this is a blessing for both of you. He is safe with those who can do for him that which you could no longer do for your own health. And your distress at having to place Sid is as real a sorrow as anyone can have to accept. There are many here who have faced what you did. Now you can visit Sid when you can and when you feel up to it. And you can come home again and get the rest you richly deserve after all you have been through and you have had a huge cross with two to care for for so many years. But your Sid is still with you.
For those of us with the *, and I would guess even for those who faced placement as you have, would say that the new freedom following the death of our LOs leads to a new freedom but not one free of strife...
Still, I find I do some of what you do.I sleep later than I would like but my problem is getting to sleep in the first place now. Maybe I don't feel as safe in the house now as I used to even though Ozzie is gone..at least he could call 911 if need be. I sit in my jammies as long as I want, don't eat right ( blood test tells me I need to address cholesterol if I don't want to be on meds) shop for groceries only once every two weeks, fill the car less often since there are no more doctor appts and RXs to fill, clean when I feel like it, don't have to pay in home help anymore, do less laundry ( miss folding his clothes though) things like that. Now I am trying to remember how I did things in the days before I even knew my Ozzie...how did I manage full time job and keeping the house orderly etc... Yep it is a new life alright. I would make a suggestion, to those who have the freedom now that Joan has having faced the sorrow and pain of placement and are finding out you are on the other side of the caregiving stress of 24/7, take the time to take care of business if you know what I mean. My Ozzie I thought was doing pretty well..until acute pulmonary edema moved in and two days later he was gone...I never looked into funeral homes...or other things....so while you are enjoying your new found richly deserved freedoms, take time to take care of business, the really unpleasant stuff now so you won't feel the stress of funeral planning and all that follows when that time comes. I did all the elder care stuff but in the ensuing years worried so much about paying bills and planning for placement at some point that there are things I wish I had done for the house notwithstanding worry about his bills for care. Now those things are on hold.
Hugs to you Joan, I hope you are refreshed fully or nearly so and look forward to your knits on your FB!
Sonny has been in NH 6mo. now.I think I am still at the same stage as Joan.When I placed him I thought of all the things I would do, but ,alas,still ignoring what needs to be done.Guess it will take longer to adjust than I figured. I did order a new vehicle(didn't really need one) got everything on it I wanted and some I didn't need,no discussion with anyone about color or features. Picked it up yesterday,Daughter said," Mom, did you really need the offroad package and be able to drive thru water" Who knows,maybe here on the mountain we'll have a flood. But, anyway,Joan, I think it takes a lot longer to handle our single world than we thought,but we'll keep working on it. Our day will come when we'll be comfortable with it.
I do feel more freedom despite having a job, a teenager at home, 2 special needs cats, and a wife who calls frequently during the day and requires a midweek visit to do some task or calm her down. I can't consider going away for a weekend or sleeping in late.
But I do now shower and shave in the morning (every morning), read a book at night, talk on the phone with friends/family, eat when I wish, eat what I wish, slowly rearrange the house, set up a slot car track, and go to bed when I wish. And not focus every minute at home on my wife's care and demands, which includes not disturbing her sleep. These seem like small things but remove a lot of stress from my life.
I haven't managed to do a number of things on my list, such as bicycle riding on the weekends and using the office building gym, but I think I will do those in time. I am trying not to shift gears too quickly
Several times people have asked me what I plan to do when I'm no longer a caregiver. They seem shocked when I tell them, "Nothing. Absolutely nothing." I guess they think I'm going to run right out and take a trip to Europe or take up a new career. But before I can do anything, I think I need a very, very long convalescence in order to feel like a human being again. This week DH returned home from about four weeks in respite, and I did a whole lot of that "nothing" while he was gone. I thought I would get all sorts of projects done (I had lists of things to do), but I was so exhausted I just sat. And then sat some more. Thankfully I had some food cooked and frozen dinners in the freezer, or I don't know what I would have eaten during that time, because I was too exhausted to get to the store or cook anything.
I did, however, enjoy some of that freedom you talk about. It was so wonderful to be able to sit down and not have to jump up immediately to do something. I could watch a tv show all the way through. When I was tired, I could take a nap, or sleep late in the morning. I didn't even have to go out and get the mail every day. While DH was gone, I realized that my two most common sentences were "What do you need?" and "What are you doing?". Not exactly restful.
After thinking about your blog for a while, I realized that some of this freedom is just normal life--things other people take for granted, but that we haven't gotten to do for a long time. I do think sometimes about "life, liberty, and the pursuit of happiness"—very basic things that we often give up to take care of our loved ones.
Yesterday I started another round of physical therapy. One of the things the therapist asked me is what I do for myself. Tears came to my eyes at the thought of doing something for myself--not just occasionally, but on a regular basis. After over a decade of caregiving, that's still something I haven't been able to figure out how to fit into my life. Any more, by the time the absolute necessities are taken care of, I'm too tired for anything else. But I'm still trying for some of that freedom that I've come to think is just as important as caring for our spouses. We matter just as much as the people we're caring for, but so often our needs fall by the wayside.
My DH is still at home - in middle stage - some days he functions better than others. I do find myself thinking of what I will be able to do once he is placed. Not trying to wish him away at all, but as you all know, when your 24/7 is spent as a caregiver, washing wet clothes and discussing what time it is 25 times a day, etc, etc. I find myself longing for a chair on the beach with my feet in the sand, a stack of good books to read and no one as me anything.
As you said, Joan, I too have never had any time to myself, from living at home with my parents I moved directly into marriage 47 years ago.
Take good care of yourself, continue to let yourself rest and heal. Hugs!!!
Authorization is the key to doing. Believing is the key to authorization. I think this blog nailed a crucial aspect of the Alzheimer's journey.
I can't change what has happened or turn off the ache or save them from this disease.
What I can do is believe in the right to life and the waste of life. I can also hold to the principles that our love was based on which is genuine caring for our partner's happiness.
Happiness and saddness are not on/off switches. They live intertwined with all other things in our lives, in our minds, and certainly in our hearts. When I say I'm happy as I've said recently on your site, it doesn't mean I'm not also sad at other moments mixed in. There are dozens of feelings (coy, dirty, fresh, worn out) and thousands of combinations.
What it does mean is that the disease does not force me to stay down and depressed only. That I have the will and the desire to live as well.
Learning how to authorize cold pizza for breakfast when we feel like it is a direct anitdote to depression as a metaphor.
We all get through. We all shop and pay bills. The minimum of functionality isn't much in question. That's not authorization. Authorization is smiling that we're allowing cold pizza right now and not actually worrying about it.
In parts of Italy the widow wears black the rest of her life. If I was a woman and I lived in Italy I would raise a scandal. I would wear bright yellow whenever I felt like it. In my world there's a difference between what love and respect is, and what a waste of life is. I respect mourning and custom but I'm not buring the cats and myself in the tomb with Dianne like they used to.
I have two jobs now. Watch over Dianne and live. When Dianne is released finally I will have only the one. Every single step I take claiming my life back in a genuine way helps me to be stronger (which we will need) and helps me to beat Alzheimer's in the only way that is open to me.
Good blog because it puts that hope into the minds of those that don't read inside the bulletin board.
JanK, You hit the nail right on the head. I have a good friend whose husband died of ALZ 3 years next May. She now leads the ALZ support group we both attended. She mentioned that after her DH died, it took her 6 months to begin to feel rested. She has a good support network with some family here which I am sure helped her.
In my case, soon it will be 3 months. One thing I discovered ( and I see where you are taking PT) after my Ozzie died, is not only how dreadfully tired I am, and all the admin of paperwork etc following that which takes some months to finish and is it's own new stress, but the owies I developed and didn't have time to address except for 2 years ago when I took PT for a hip and then a little earlier this year for a shoulder impingement problem, other pains and aches present themselves and either I just soldiered through it or didn't recognize it. In any event, today I had a painful MRI today. No the MRI didn't hurt nor the noise bother me...it was the lower back pain that has been pinging me for some time, that I just took some OTC Advil for...but it now seems it might be sciatica..and I hope it can be fixed with PT...WE try or think we are taking care of ourselves and sometimes with all our effort we fall short especially as our LO becomes more and more fragile and we then have less and less time to pay attention to our own body's screams.
So, your answer is perfect..rest and recovery time, mental AND physical, are what is needed most. And if you need counseling, get it now, don't wait. That helped me a great deal especially as Ozzie began to decline more this year. It was a doctor who advised me to do that and I am glad I did. I think it has helped me in these past almost 12 weeks.
Blessings on all of you who are still in the journey trenches..
Well said, Wolf. I do think that for those of us who were not able to or were not yet at the place where placement was a necessity it may be harder to achieve some of the goals you have or policy on authorization to do things. For those who have placed, and I am not one who had to but was in anticipation of it soon, the stress and sorrow of having to do that takes a toll. But along with that, when you get to a point where you may start to feel more rested, your thinking becomes cleared and you can begin to find balance again. So Placement in itself can be a two edged sword but in the end, perhaps those who have done so can speak more clearly to the aspects of finding their footing again. This is a great topic..
ps, Wolf, there is a tabby cat that moved into our yard this summer...just decided to stay. About a month ago some guy at the mail box said say that looks like a cat we had. Well this cat had wandered the neighborhood and since he has white paws we called him Chanclas ( means slippers in Spanish). The guy said well he looks like a cat we had and he called his name..Wolfie..sure enough his real name is Wolfie and when he is on the wall for breakfast I always find I wonder what words of wisdom you will share with all of us today! : )
After two and a half years since placement of DH I feel like my life is a merry- go- round. After the initial sadness phase came the enjoyment of physical and mental freedom phase. I have thoughts of perhaps I could bring him back home to realizing that he will not be coming back home. The old guilt feelings still creep back in my head. I still feel like his life is my life so around and around on the merry-go-round I go.
I am blessed to have several very good friends and the last time I got a weekend away (the 1st in a year), I spent the night with them - we had a sleep-over and did just exactly what we pleased all weekend. My dd with children who spent part of that weekend with her daddy just couldn't understand that we had no plan because we had been planning this weekend for 2 months. It just felt so freeing to not have to make any decisions, answer any questions, go for long walks and long talks with girlfriends and not answer my dd's texts (boy was she pissed because she wanted to know where I was - I didn't feel like telling her - part of my freedom weekend). My brain took a much needed rest as I knew that dh was in good hands and I would have answered the texts if there had been an emergency. It was a very special weekend for me.
But, Joan, I often wonder what I will do when I am alone. It is so easy to become defined by what we do for our spouse and his needs become who we are. I think it will be a difficult transition, just like it has been for you, even though at times I long for my freedom with every fiber in my body.
George's caregiver - you sound just like me! From my parents' home to my married home 47 years ago, then kids came along, & so it goes. D. is in middle stage (I think - sometimes I really can't tell), but have not yet had the wet clothes, etc. The time & day/date thing drives me nuts, but if it never got any worse than this, I could cope. I'm sure that won't happen, though. I've never really been on my own, have never been responsible for just myself. I admit that I have thought about it a lot, even to planning a new queen size mattress (deluxe!) & reclaiming our bedroom (MY bedroom!). I'll be 72 next month - oh my - & my selfish concern is that I might not have many years left to look forward to some freedom. It's out of my control, though, so I just keep on with my imaginings. Something could change in the blink of an eye. I think, though, that D. is going to be one of the "long term" ones - it seems to be going very slowly. That sounds rather crass, doesn't it? But it isn't something that I look forward to or long for!
I can so relate to your post. I went from my parents house to being married and 2 step children and 2 of our own. Now the kids are grown. All 4 are married, but my youngest daughter has many issues with eating and panic attacks. I am going to be 52 in 4 days, and wonder how long I will be dealing with DH. I do not work now for taking care of him. He is still mobile and has few incontinent issues. He cannot keep up with conversations or follow instructions and gets up at least 4 times a night. If I go anywhere I take him. That is so stressful. When I do get someone to take him for about 4 hours a week, I do not know what to do with those 4 hours. I am not a shopper, or go out to lunch person. I really want a job again to see people. I always imagine when DH is gone, how I will sell the house move some where that I can go to museums, shows, and have a job. It does not sound crass about being one of the "log term" ones. I feel that my DH will be one also. He is 61 and we have been dealing with this for 9 years now. He is mid to late stage 6. He seems to fluctuate between some of stage 5 and some of all of 6. I have been home for 5 years now with him. It seems like forever. I love him. I will keep him home as long as possible. I do wonder when and if I have to place him what I will do with the freedom. I will just keep imagining!
jackiem - after reading your comment, I surely have little to complain about. You both are so YOUNG! D. will be 79 in February & he comes from a family of "long-livers"! :D His mother & her sisters & brothers all lived well into their 90's (actually one of the sisters was 101), so I wonder, since he's in good physical health, how long, how long...... I do try to get out without him at times,he can still be left for a few hours. He's always been a homebody & doesn't show signs of wanting to wonder. I think he feels safe in the house. Most of the time, though, if I'm getting ready to go to the store, or wherever, he'll say "do you want some company?"....I don't have the heart to say no. Plus I know he needs to get away from the house sometimes, just like I do. Whenever things like incontinence start, that will certainly change things - or if he becomes really agitated or nasty. He hasn't been too bad lately, then I start to wonder if he really has Alz., then something will happen to convince me yes he does!
I'm really settling into doing what I want to do or not do for me whenever I want. And I like it, but I can't help feeling guilty about focusing only on myself. I guess I should clarify that. I focus on my wants and needs when I am home alone, but I am fierce about making sure that the NH is talking care of Sid's needs. I am relentless. When you have a LO in a facility, you have to be on top of things every day. And I do mean every day. But now I can go home and take care of only me. My crippled back is thankful for that.
Joan, I think that women, sometimes, are not comfortable unless we have something to feel guilty about. Or is that Catholics ... or mothers ... or Midwesterners? Whatever the root cause, there is no reason to feel guilty for taking care of your own needs. You have made heroic efforts for years to give Sid the best of care, now you must give yourself permission to do the same for you.
It seems to me that the guilt is part of being a woman!! I thought maybe my generation had a lot to do with it - you know, take care of everybody else, we're at the bottom of our own lists. (Yeah, I know, sounds whiny, doesn't it?) Maybe it's just that nurturing nature?
My FTD husband moved to an ALF Monday,6 days ago. While I had done everything to furnish his room before he moved in, all the papers,etc, most days I have had to go over and do whatever thing was needed.So, my days were still filled with efforts for his care. We live in a beautiful Senior Comunity where there is a continum of care and then two cementaries on the campus tucked away. So, I think this is our last resting place. The ALF is less than a mile away within walking distance. It is lovely, the staff are wonderful. The place is so quiet and peaceful and has no odor. We have been joined at the hip for about six years. Freedom...I don't know who I am, I think I feel numb. Lots of sadness and crying before he moved. But now, I feel a release of responsibility, but numb. I find myself running around getting things ready to take to him when I visit. I don't need to do those things, but habits are hard to break. I keep telling myself " put yourself first now". There is plenty to do here, lots of caring people but I just feel numb and wanting to overeat. Never thought this time would come. I am planning not to visit him everyday. I love him, will always care for him and protect him, but I am so tired of this caregiver role to my husband!s body with the personality of a child. I miss my sweetheart so much.....but not that person down the street. Part of me wants to say that it is cold of me to feel this way, but I think the sane part is telling me that it isn't coldness....it is finally accepting the reality of this cruel disease. God help us all. We all belong to a very special club that nobody wanted to join or be part of. And my best friend from high school died last week of AD.
Woke this morning sobbing. Nightgown wet at top so must have been crying in my sleep. I don't feel numb right now, just incredibly sad. Might be a robe and slippers day. Sure cant visit him this way. Thank you for your kind words and understanding. I guess this is grief. One of my favorite books is by C S Lewis. His account of his raw emotions of losing his wife,Joy. Grief Observed. Perhaps time to re read and learn from his pain. Thanks for being here.
Pavane so sorry you are having a bad time after his placement. as many attest its one of the most difficult times we have to endure with this disease. be kind to yourself and take care of you now and hopefully you and he will adjust well enough to see this thru. divvi