Okay. Message boards seem to be back. Have no fear, the computer expert will be here very soon. After all of today and yesterday's computer problems, my blog seems quite appropriate. I invite you to log onto the home page - www.thealzheimerspouse.com, and read the Tue/Wed. blog. Please comment here and tell us if you have any secrets for doing it all.
I am adopting 'secret squirrel's' answer....I love it!!!! As for me, I take things one item at a time and one day at a time. Like eating an elephant one bite at a time, you eventually get it done...or don't. And I've become too busy to dwell on what I don't get done so that's a relief now. So...it either gets done, waits, I get someone else to do it, or it just doesn't get done.
I do it all because I make the choice to not do some things that I want to do. As a young working mother who liked to hunt big game, I had to give us something because I didn't have time for it all. So I gave up sewing and hand work. Now, I have given up working with my files, pictures, etc. Anything that takes my focus away from DH gets pushed to the side. This makes me a little bit angry but I really don't have any choice. It's better than putting up with the pouting when I choose some other activity over sitting with him. Also, I have a hearing problem so I can't be in the other room and carry on a conversation.
I have a problem with resentment I think, because I HAVE had to give up so much of my own life. I've always been an outdoorsman, too. I run a farm, like StuntGirl (where are you???). Ya know what? (I hope she's reading).. I've begun to go back outside without guilt anymore. I check in from time to time and keep an ear out. I have walkie talkies and a cell phone. (I go over how to use the panic buttons everytime I go out on the acreage or work in the barns). I provide what care (VERY good care, along with help from agencies the hospital sends) that is necessary. But, this "new character" that is me WILL NOT be knocked back any further. I am an active, healthy, intelligent ...maybe even attractive in a tom-boy kind of way ... YOUNG woman with an older spouse. I won't become a martyr because of my wedding vows, he wouldn't want me to do that. TERRIBLY jealous, but I know that will fade away, too, with the rest of him. I have my days of wanting to do nothing but cry and have my own private tantrums with "god". Sometimes I take a day and sleep it through....just like my "dh". My solace is that this is not forever. "God" doesn't want that kind of suffering, either.
Joan- In response to your blog, how do you do it all.....Actually the answer is very simple....one thing at a time...(and yes multitask) I try not to look at the big huge pile in front of me....just a spoonful at a time, and pretty soon it is a small pile...Handle things quickly and decisively, and getrdone. There are no opportunities to redo things so do it right the first time, get it over and done with, and on to the next thing...Deal with the problem immediately and solve it if you can...Like laundry, it is easier to do a load a day than to pile it until the weekend...Delegate as much as you can....Use every resource you can think of....combine tasks, ignore the unimportant things, and do not sweat the small stuff...Concentrate on your mission, and everything that is not part of it gets ignored....Do not be a perfectionist....half done right is sometimes better than not done at all...Get rest, and when you are awake, run at full throttle....give your total effort and concentration. I separate things into 3 catagories...very important, not important, critically important, and ignore (I know..that's 4)...Make the most of the time you have... There are 24 hrs a day for everyone!! there is no such thing as not having time....you chose what to do in the time you have...and also you can choose what you do not have time for.....If you are stuck waiting in traffic, or in a dr. waiting room, bring something important to do...I often use the "waiting time" to make calls, appointments, read, or plan my next move...I have no "idle" time, unless I choose it.... And if all else fails, bashing your head against a wall works wonders for me......
Good advice phranque! I used to be a bit of a perfectionist....not so much anymore. I try to answer emails and phonecalls right away. It might not be a lengthy, clever, well thought out communication...but at least it's a response.
When I have to memorize things for a class, I have 3 x 5 index cards that I carry in my purse.....so at traffic jams (in Phoenix we get those a lot), in waiting rooms, etc. I don't get so annoyed that I am wasting my time, because I'm not.
I am getting better and better at asking for help too.
I work full time and sometimes I wonder how to do it all. For me, I don't. I can't do it all and I've had to come to terms with that. I have learned that I have to take each day as it comes, live in the moment and deal with each situation as it comes.
Someone pointed out to me early after dx that working, while challenging, may be good respite for a caregiver. I would be interested to see if those who are working feel that way--I'm retired. I can see where it would force you to get away from the disease for awhile--except in Joan's case of course--and think that would be beneficial. If you don't work, it can become all caregiving, 24/7.
I guess it depends on what type of job you have. In my situation I work 3 days a week as a nurse for a home care agency. I enjoy the challenge of the job, and I work with some very nice people who provide support and a good diversion at times. Unfortunately many of my clients either have or are caring for someone with dementia, so I cannot get away from it. On the other hand it makes it a whole lot easier to empathize!
I work in landscape maintenance, and I just love the brain dead activity..routine and boring, and truly a no brainer..Very little stress and no thought activity required, and it helps me recharge my batteries. I use the brain dead activity to think, pray, and ponder decisions I need to make. I do look forward to it since it has become a haven for me, but the hot weather drains me physically. But, the free "thinking time " has allowed me to solve Rubik's cube in less than 10 nanoseconds....
I have decided that there really isn't any such thing as "doing it all". I take one day at a time, do the best I can and pick my battles (things to get done). I am very fortunate to have 5 weeks plus 1 bought week vacation so will take one or two days off a month to just get things done. Those days make all the difference because I try to take them when I am feeling overwhelmed and out of sorts so they do take the edge off.
Haven't you ever noticed that there always more things on the to do list than you have time for. That reality hasn't changed, we have just added caring for our loved ones to the list and that takes a huge amount of time.
I have also cut down or chosen to not do some of my hobbies - I miss them but he is still more important.
Bella-I'm a home health nurse, too. Didn't help in dealing with a dementia spouse. Phranque- I once had a young cardiac patient who was going home from ICU only if he would accept home care. We spoke about stress and he admitted that his job caused a great deal of it. I asked him what he did and his answer surprised me-he cut lawns for a living. He had a difficult time dealing with people who were not satisfied with his work. Stress is what stress is.
I approach the whole thing on several fronts. Somethings are routine--grocery shopping is done early Wed. morning so the list, coupons and check have to be ready for our helper, when he leaves Tuesday, and bills are done on the 3rd. Balancing the check book is done as soon as the statement arrives. I now have more do lists. The current, "what's on tap for today or this week list"; the "Goal by the end of ___"List; the must be done list(no deadline,soon); and the Wish List(when I win the Publisher's Clearing House or Lottery)list. Things on these lists do get done, some sooner than others. When well meaning friends or relatives point out something I need to take care of, my answer is, "It's on my list."
I get up every morning and by night time I have crossed off several things from my lists--some big, often small things. Of course, during the day, I've also dealt with multiple unexpected chores--a problem with a bill when the mail arrived; DH's demands for attention/help with his projects--never know when or what; someone stops in without notice. Along with all this, I incorporate time to do e-mails and come to AS, and read or knit. These last are for me. I've improved lately, to getting about 6 hrs of sleep per night, up from the 4 I used to get and most Sat.s I sleep in--to 8- 8:30. Bedtime is usually 1-2. My lists never get all crossed off. The undone things get moved to a new list and I keep working. Job security.
I can't do it all. I work full time. DH is in a nursing home. I'm raising 3 boys by myself with my 2 sisters' help. We moved close to them, and now the routine is for me to leave the house before they're even up in the morning (summer vaca), drive for almost an hour to work, work 8 hours, then drive the same distance back and pick them up. By then, I have little energy or patience left for them.
I feel so bad for not being there for them, for dumping so much of the burden on my sisters (they're good kids, but a "handful", as you can imagine, 3 boys under the age of 12!)
We just bought a brand new house, so not working is not an option, but I feel like I'm a hamster on a wheel right now.
And I miss DH so much lately. The loneliness is overwhelming at times, even in a house full of noisy boys!
But I don't have to worry about DH's care, like so many of you, change him while I'm still changing our youngest. But sometimes, I feel guilty for putting him in the NH, even though I had no choice, and it's the best place for him.
I wonder though if the boys will grow up and resent me for not being there for them. So much guilt...
Kelly, I was thinking about you the other day. You are so young and with children at home. We have a new member from Montana with a 6-yo daughter and she is in very early stages of FTD with a young husband. I told her that you might come along and give her some "kid" advice.
I'm glad the see that you are still around. You have a wealth of experiences to share...if you can only find the time.
kelly you did what you had to do. You couldn't "fix" your husband but you did have your boys to raise. The loneliness for your husband will become less acute-trust me it will. As far as your boys-you are there for them-probably more so than if you had kept your husband at home. No child should have to see his mom changing his dad's diapers.
You had to make some tough choices Kelly. You are a strong woman, you can do this. Most likely, the boys will grow up and be proud of their courageous mother.
Kelly, I am raising a 9 yr old grandson. Jim is the only father figure that he has. I have just been honest in answering him questions. I answer them as simply as possible. I was lucky enough to find a MALE Play therapist who is terrific! The other day, Dylan came to me with a question. So I sat down not knowing what to expect, but ready for emotion and tears as he asked when I thought Papa would be moving to the Soldiers House (The VA Home). I hug him and said I wasn't sure, why did he want to know? His answer......."Well,,,,,,when he goes, can I have his fishing stuff??" I thought I'd die of shock, then laughter, I said yes, but "Let's not tell Papa, just yet :o)
Joan, the last time we moved it was in a big hurry, we looked into hiring the moving company to pack our belongings. They will do as little or as much as you want.