When we started this journey (let's just start when they were "officially" diagnosed), I had the normal amount of energy: I could get up two hours before leaving for work, have coffee and read the paper with my husband, shower and dress, make the bed, etc. and then go to work. Come home after work, and change clothes, pull a few weeds, sort through the mail, have a glass of wine with my husband, prepare dinner, clean up and watch a little TV and/or read a book together. On weekends we went to a state park to enjoy the outdoors, or went to furniture stores to look at the latest furnishings, or to Best Buy to look at the applicances/gadgets, or went to the movies, or went to see friends, etc. and Sundays we went to Church, out to lunch, etc.
After AD was diagnosed, I was finding where he hid things so I could put them back where they belonged, help him in the mornings, find things again when I got home from work, fix the computer and TV which he messed up and couldn't use either one until I got them back on; repaired what he broke that day, etc.
Then get the house "AD" proofed and spend the time after work just "sitting" with him and watching TV or reading or being here at Joan's on the computer - because to try to do anything, meant he insisted on "helping" me which meant it would take me twice as long to do it and fix his mistakes - it was easier to just sit and enjoy his company and try to make him happy with my attention. Stage 6 was lack of sleep - he couldn't sleep well and kept getting up and waking me up - thank goodness for Ambien - after months of lack of sleep and me dragging myself to work, I could be better productively again!
I then got Hospice. A life saver, to be sure! I came here and started telling all of you how wonderful it was, and many of you are now in the Hospice program. AND respite care....OMG....It saved me. I didn't realize how much I needed it. But it just keeps the battery charged. Which was and IS desperately needed!!!
The stage 7 however, required that I get him up, shower him and me, dress him, get him settled in the den while I dressed; feed him; and leave him with a relative while I went to work; then after work, have to help him up and to the bathroom; help him get to bed at night and undress him and tuck him in.
I didn't realize how exhausted I had become until I got the hospital bed and put his recliner by it and no longer had to have him lean on me to walk so far so often. But the eye opener came last month. My daughter told me to let the in-home caregivers get him up in the mornings, and put him back into the bed (sitting up) when I get home and save my back (which was starting to really bother me). So I listened to her. After ONE WEEK, I could tell a difference in how I felt.
My energy has now returned! I FEEL GOOD physically again!!! I have been on a cleaning kick for two weeks, and spend a couple of hours each night after dinner going through things I had just set aside or put off doing (for some time) because of needing all of my energy and concentration to take care of my husband. I now feel better about my house since I have de-cluttered most of it (I'm not through yet!). And I feel better about myself! Even though it breaks my heart to look at my husband and see how fragile he has become, I know I have done everything I can to make his life as loving and fun as I can as he slowly leaves me. I even can occasionally get a smile, though it is so rare.
So my advice here is to realize what you are doing physcially, what could be done by others, what help you can get so that you can regain your energy. With more energy, we can help ourselves out of the worse part of the depression this disease puts us all in, knowing we are losing our best friend, lover, and light of our life. There are agencies that have volunteers that will come and stay for a couple of hours - so call the local and state agencies and check.
I hope all of you will think about your energy levels and what you can do to improve them. (I'm not the Energizer Bunny yet, but I'm working on it!)
Excellent post, Mary. I find that when I am at my wit's end, and need nothing more than to lie down for an hour without someone demanding something from me, is when I pick up the phone and ask for help. It doesn't matter what it is - the seemingly smallest gesture of help takes a huge weight off of my shoulders.
The maintenance man is going to help me set up the wheelchair ramp for the doorway. The PT comes to get Sid for his session and brings him back when he is finished. The ALF bus driver takes my father to his appointments in the wheel chair accessible bus. All I have to do is get on the bus and sit in the doctor's office with him. There are many more examples, which I can't think of right now, but when I need help, I call for it.
ehamilton, I had to snicker at your post! Sounds like me! Me, the one who hit the floor running in the morning because I love mornings! Me, who loved working outside. Me, who loved to clean house top to bottom. Me....the one who has trouble dragging her butt out of bed most morning, staggers to the kitchen, realizes she forgot to get the coffee ready the night before, gets DH up and ready for the coffee when it finally finishes....you get the idea. I'm too exhausted to type any more. LOL!
Jeanette, thank you for asking! <grin> I did it one box at a time. I would bring a box and place it on the floor in front of my recliner (so my husband could see what I was doing - he doesn't like me out of his sight when I'm home and I try to make him feel secure by staying where he can see me or explain why I have to go in the back of the house) - and I take a garbage bag and a plastic tub and set them within reach. I put the trash in the bag, and donations in the tub and anything that I just really need, I go and put it in its new home. If it won't fit, then something else from that spot must go into the tub or bag! I can usually do two boxes a night. ( Most of them contained paperback books and VHS tapes - plus some magazines, gifts I couldn't use but couldn't give away earlier because I didn't want to hurt anyone's feelings, clothing that I might get into some day (HA), and knick knacks.)
Due to everything going on for the past two years, I had really been bad about putting things in tubs or boxes to deal with "later" because I was so exhausted I had no energy. (And now that I do, I felt that maybe others would benefit from knowing there is hope! Energy can return!) This has really been a wonderful thing (almost like a big burden off my shoulders) for me. I look around a decluttered room or closet or kitchen cabinet and mentally pat myself on the back! <grin>
Well, Mary, you inspired me today so I went upstairs to the rooms we no longer use (but closets still pretty full) and came down with lots of stuff that went right in the trash or good will. But nowhere near decluttered. Younger son had a neighborhood garage sale last weekend and did a pretty good job of cleaning out his old closet. Now why is there still a guitar in there, and ice skates? I was not up there supervising, I was playing with the grandchildren (much more important). While we were up there, played some pingpong with dh. Should do that more often. He really enjoyed it.
Mary, Oh how I wish I could do what you do as far as decluttering. Unfortunately my DH doesn't want to get rid of ANYTHING! In fact he is the one who wants to buy more stuff at yard sales (which I try not to go to too often). So anything I get rid of I do on the sly. My daughter says that she will try to come over some Friday afternoons & take her Dad for a few hours so I can get rid of some of the "stuff" around here. Let the decluttering begin!
I have started sorting things here. I am not getting rid of much right now because of DH. But what I am doing is putting the things I know I don't want in boxes in the good shed and when the time comes I just need to pick the boxes up and give to good will. No need to sort. The things I may want to keep but don't use much now, I am putting away in the house. That way if I move I know what I need to take. All of DH stuff is in his den and most likely most will not be coming when we downsize. He has kept so much over the last 30 years, even reports he did from over 30 years of work. He does not like to let go of much. But if it makes him happy to have it around now, that is fine. I will deal with it all later. I think without me around he could of become a hoarder. He has always had a hard time letting anything go.
Isn't dumping "stuff" a terrific feeling? My daughter and her family rented a trailer and came over and just started hauling things from storage areas, backyard burn pile, garage etc...tossed it in the trailer and waved goodbye to me! Amazing how much lighter I felt. The things that are the most helpful seem to change on this road! Gratitude to my caring kids.
Need to face the clutter removal here too...thing is it isn't junk..but my dh does have lots of books the kids have given him over the years which he has read. I keep thinking one day I'll read those too and so far...have not done that.I like to read but not a lot of time for it. The trick is, having someone who can get them away for a spell so we don't have the help we don't need if you get my drift... My DH too is still somewhat particular about his stack of stuff and so.....I join the rest with the procrastination..
Thought I was the only one with piles of useless STUFF.But my husband is a pack rat,loves Goodwill ,dumpsters and yard sales.The kids used to say let him go he's happy but now they are worried they'll get stuck getting rid of it.I put things in the garbage only to find them in his closet or shed.Little crap and empty containers.He will not go anywhere with the kids unless I go with him so I can clean out.I did get some things thrown out when he was in hospital in June but it was a real hot spell and I was too exhausted to do a lot.He said he's entitled to his junk it makes him happy.Guess he's right,I have junk I want to keep.At least,after reading your comments I don't feel so badly,we're all in this together.
I comfort myself with the thought (a college friend wise beyond her years said this) that one of the purposes of a home is having a place to accumulate the STUFF that makes you happy. I agree that it's not necessary to get rid of stuff our LO wants, but -- in our case at least -- he never notices if I get rid of stuff when he's not home.
My DH is the same way. He has a lot of stuff and if I throw them away when he is around it is a big NO NO but if I throw them away when he is gone(doesn't happen often) he doesn't even notice and doesn't ask. YEAH!!!
I have cleaned out the house of things not needed or wanted - now to the garage! DH keeps empty screw containers, empty anything containers. LOL He will not get rid of it! Everytime I go into the garage to empty the garbage or get a watering can, I quickly pick up stuff and put it in the garbage. He never notices and I'm slowly dwindling it down! Our mower asked me to let him know when DH was ready to get rid of the tools he has left - he isn't ready, but I am!
I just came up with a whizbang idea for getting the STUFF out of the house. See my dh is in the TV room which means I have to walk by him with the STUFF..so...lucky me....we live in a one story house....so my new plan is to take the screen off the window once I have the STUFF bagged up and then set it outside, put the screen back on and then tiptoe around the house, get it in my van and he will never see it go.... BIG GRIN...
Gadzooks I have to make sure it is a window on the back of the house or someone might call the coppers on me thinking I am breaking into my own house....glad I thought of that one catch..whew. More Grinning...
I have been getting rid of "stuff" since before Charlie was placed. I have come to the conclusion that we spend the first part of our lives accumulating "stuff" so we can spend the last part of lives getting rid of it. I have informed my children that when Christmas and birthdays come around I don't want any more "stuff".
That is a great idea Mimi, and a funny one also. It should work. You may even be lucky enough that your dh will pitch in and not even notice what is being put out the window. My dh sees me doing things but has not idea most of the time what I am doing. He ask if he can help but once he gets to where I am, does not know how to help. Good luck with this and let us know if it works....Have a great day.....
And don't let anyone breath a word to my DH that they are having a garage sale!!!!!!!! I hate the idea that he knows about them. Vickie, I think we must be married to the same DH(haha) my DH loves to hord toilet paper rolls and cans that food was in (he takes the top off of both sides of the can and rinses them out and then I find them all over the place) when I ask him what he wants this for the answer is always the same. He wants them for his molds. I have yet to see anything moldy done to them.