I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. It is with a touch of humor I write about my crazy life with my AD husband.
I answered my cousin's question as to what keeps me sane (sort of sane, I guess). What keeps you sane through all of this?
I have a positive attitude towards just about everything. The glass is always 1/2 full. I try to focus on what he can still do and not what has been lost. So what keeps me sane besides that - working full time (gives me something else to think about), my animals, going out with friends, reading and the little bit of knitting I get to do in between working, visiting him, spending time with my animal kids and taking care of a home.
Mary, I forgot to add that sense of humor in there - you are so right, I can see the humor is so many situations. I now know and understand where some of the humor we have seen through the years has come from.
Having a girlfriend that will take you places when you can't take anymore.Nothing better!!! I have one that seems to just know when I need it the most. We don't have a Sketchers or aniything like that(small town living!) :(
Joan - not all women know what Sketchers is. I had never heard of them. I shop for shoes mostly at K-Mart (if there are any left), Wally World, and sometimes Big 5.
I can understand the writing. When I was going through my depression in the 90s my journaling was my salvation. I know I should be doing it now but just can't bring myself to do it. I started a blog but didn't know if anyone read it so stopped that. Journaling has really been on my mind lately as he progresses and I get more stressed/depressed - I guess I need to just do it.
Like Charlolette I buy my shoes at K-Mart or even Family Dollar. Never had a name brand in my life. As for being sane, I am not sure that I am, but I do try to be positive and like so many of you I do write my feelings down when I feel that I just have to have an outlet. Nothing organized, just write as I feel the need.
As I often felt about my dull, ordinary life, if it was a movie, people would laugh. I was laughing at the dinner event and holding all the remotes. I was always good w/office machines, could repair typewriters, mimeos, etc, but w/todays techie stuff--no way. Fortunately my g'son lives w/me and 3 other young men so my remotes get handed around quite often. The other night the one from Turkey had my TV broadcasting a soccer match from the stadium in Istanbul near his home--in real time. Wow! His friend from Belgium was also here but doesn't speak Turkish, so it was all being translated and then I watched all the ads in Turkish, very fascinating. Btwn them they speak Hungarian, Flemish, French, Turkish, English, and one is picking up Spanish here in Los Angeles. Have a Sketchers nearby but I buy everything I can on-line, don't like going into stores. I have one pair of black 'party' shoes, otherwise I wear Keds, Keds, Keds or go barefoot.
Absolutely writing, journaling is a very good thing. People get tired of hearing the same thing over and over, but writing is really having a good discussion with yourself, someone who really cares and understands, helps you get things straightened out w/out someone being judgmental or giving inane advice about something they read. And you can re-read it, edit, change and not have to justify anyting you say to someone else. You don't have to push it, Charlotte, but I think you have a lot on your mind--when you're ready.
Writing my blog is the only outlet I have...my friends at church just don't get it, they always say "oh he looks good" they just have no idea. I am trying learn from something Joan said about not everybody wants to hear all stuff over and over again. So I am trying to learn to only use the blog and this forum to vent and listen. I don't think anyone can understand with walking in our shoes. Charlotte I know I am new to this site ,but would welcome more communication.
Sherizeee, I "hate it" when people say "oh he looks so good". Of course he looks good. They don't see him when he has that hatefull look on his face or when he is talking nonsense. I have a friend at work whose husband had a stroke & is confined to a wheel chair. We joke that my husband has his body but not his mind & her husband has his mind but not his body. I asked her if people really want to know the truth when they ask her how her husband is doing & she says "not really" so I asked her what she says & she said that her response is "as well as can be expected" & I have used that phrase many times.
I use the " as well as can be expected" too but there are times I want to say " do you really want to know?"..cuz truth be told I don't think they do. Then there is another part or me that wants to say in reply to that question " I'm hanging on, thanks for asking, and he is doing as well as he can." Interesting how, outside of a support group, no one seems to think we might feel less like the invisible wife if someone asked how we are as well. I know it sounds sort of selfish and all but golly, wouldn't it be nice if we were regarded as something other than just caregiver.
I usually answer that he continues to decline but we are getting along. I don't want to pretend to everybody that he's doing great and then suddenly have them find out that (for instance) he's been placed.
Yes, Joan and Therrja, humor and a positive attitude is my salvation too. I have always been the "accepting" type and have felt it's better to get on with it and make the best of whatever you've got at the moment. Works for me.
Joan, I loved your blog and could picture the whole evening!
Lots of people are asking me how I'M doing and I wonder if caregiver stress is beginning to show. They look relieved when I tell them that I've started having home helpers 3 days a week for 4 or 5 hours, so I can get out.
Getting some respite most days is what is keeping me sane (I think). Between the aide we have coming in and the adult day program, I try to build in time away from direct caregiving. Even if it's just running errands, it's time by myself not having to take care of my husband's every need. My motto is "the stress of caregiving is every day, time for me (even if it's just escaping by reading a book while DH watches TV) needs to be every day too".
It seems that everyone always asks my DW directly, "How are you doing Sue?" and she always replies, "Fine", so I'm sure they think everything is just "Fine". Some also ask how I'm doing and are pleased that I'm also having more help (longer hours). Eight hours of in home care three days and six hours of day care for two days each week. I think I'm staying "sane" but life is still hectic and very stressful and I will probably place her in the near future. Not sure if I can or should do it (additional stress).
The thing that really keeps me sane is exercising by running eight miles, three days per week and riding my bicycle 15 miles, four days each week. Eating the right foods (most of the time) and staying healthy. And training and taking care of our three Border Collies.
Jerry, I usually say "fine" but those who know me well don't believe that one any more. My sisters and I always tell my mother that we are "fine" even when we are neck deep in lots of bad stuff - she doesn't believe that either. We have gotten to the point where saying "fine" is a joke meaning things are not going well. My friends are starting that also.
I agree with the exercise. I do much better when I am consistently walking the dogs (most days) emotionally, mentally and physically. I love walking on cooler days and enjoying the changes in the colors and leaves.
I have several different supports so I can have some "Me" time: Three days a week DW goes to day care for 5 hours so I can exercise, shop, etc. 2 days a month I use this time to work in the Free Medical Clinic. One evening a week a hospice volunteer takes DW to dinner here at the Inn, so I can go to Rotary. I have a woman I hire for 3-4 hours periodically so I can go to meetings, church functions, etc. Then, even though she is with me, I get help from talking to other people here at the Inn during coffee hour (every Thursday morning) or at dinner every evening. I also get 5 days respite every 90 days from hospice. I will be using this to visit friends in Washington, DC, in October.
I do several smaller things every day, which I can drop if need be and pick up latr--reading, knitting, playing with our 2 cats and dog, coming here, and e-mailing friends and relatives. I also get 4 hours each month0of respite care when, under usual circumstances, I can get away. This month, beecause of medical appontments and comng surgery,I can't "go away", so I checked and I'll be sending DH on his usual Sunday Morning "shopping trip" with the Care Attendant and I'll stay home --- alone. No matter how you cut it, we need breaks away from each other.
My husband attends day care three days a week (MWF) for 6 hours each. On Mondays I try to run all my errands such as banking, grocery shopping, etc. On Wednesdays I visit my parents and they usually take me to lunch. Fridays is the day I try to do nothing unless it's for me--hair appointment, doctor, read or even take a nap. The days he is home I spend all my time keeping a watch on him and trying to think of things we can still do that are inexpensive since he is always so antsy to get out of the house. Today I took him to the "Little Red Schoolhouse" near our home. It's a nature center and walking paths around a small pond. Nice to do on a cool day like today.
If I didn't have those days, I don't know how I would be handling everything.