I have been fortunate to have had supportive friends tell me repeatedly that they consider the care I give my husband heroic. My reaction is--after 5 1/2 years--still surprise. Yes, it's an incredibly all-encompassing, hard job; but isn't that what love is supposed to be about? Being there when the person you love needs you, putting their well-being before your own? Don't get me wrong, it's good to hear supportive comments, I guess it's just given me reason to question what the meaning of a marriage is in our society these days...just be there for the good times?
I'm with you, MarilynMD. I've had people call me a "trooper", and say that "you have really hung in there and took care of him". What did they expect? I'm no hero for sure. But, I married him for better or worse - this is the worse, but we had so much "better" before DX. No, we can't just be there for the good times. Have to take the good and bad and make it work!
Comments like that always catch me unaware, and at a loss for words (rare occurrance, I'm told). I have never figured out a good response. I'm just living my life. Every one of us gets up in the morning with some sort of plan for the day. Some have more organized plans, others don't. Stuff happens--we cope; we do things, or don't; some days go well, others don't. At the end of the day no matter how well it went or didn't, we wind down and plan for tomorrow. There were never any guarantees so we each have to face our share of the good, the bad,and the ugly. It's how it is. We hope,love, laugh,cry, scream, research, vent, hug, wish, run,hate, fall,pick ourselves up and run again. We do it all---until we don't. What's heroic about that. It's just living a full life.
It's a shame that people just don't get it that when we made our vows we actually meant it. I see so many young people go into marriage almost expecting it to end. They think for better but aren't committed for worse.
I agree MarilyninMD, If I had walked away after twenty-five years of marriage just because Sharon got sick it would have negated a quarter century of devotion. My sweet wife was the love and light in my life. I could no sooner have walked away from her than cut my own heart out of my chest. I am no hero... I am lucky to have been the one she chose and it was a privilege and an honor to care for her.
I am getting ready to take the five day respite from hospice, and trying hard not to feel guilty. I know when I see the AFL I will want to turn around and go home, but I'm steeling myself against that. Every one is saying...good for you, you deserve it blah blah blah. He is semi aware now that something different is going to happen..I just don't know how I'm going to handle this...do I deserve this break? Who knows...I do need it , but deserve is another matter. Those large dark clouds are moving in.....:-(
kathi37--The idea of whether you (or any of us) deserve a respite shouldn't even be on the table. Every person doing a job, no matter how elite or mundane needs and gets breaks. Employment contracts require them as do Labor Laws.
The reality of our situation is that we are violating those labor laws with all the hours we put in. If we were working we wold get 2 15 min. breaks and be provided at least a 1/2 hour lunch time in each 8 hours. That ads up to 3 hours in 24 and 21 hours in a week. That should be 91 hours in a month. If you haven't been getting that each month, then you are more than due for the 120 hrs. respite you're taking now.
"Deserving" something implies having to earn it or measure up to a standard before you can have it. Respite is a necessity, like meals, shelter, a bathroom, etc. If you insist on using the word, think of it this way: Your DHH deserves a Caregiver who is relaxed, alert, and happy. You can be that person a whole lot better when you've had a break.
Kathi37, I know exactly how you feel. I am nowhere near getting any respite because my DH would never go anywhere for a week besides home at this point. But when my time comes I know that I will feel just like you do, but I also know that we have to listen to carosi & get past that feeling because we need that respite & we won’t be able to enjoy it if we have guilt feelings. I’m sure if I would ask you if I deserve a break you would say, YES YES YES! So now I am saying to you …….YOU DESERVE A BREAK! Please rest, relax & enjoy yourself. (((HUGS))) to you.
kathi37.....do not expect the guilt to go away the first respite...it won't...live with it and try to enjoy the time as much as you can and do things that keep you from thinking about him. He will be fine and looked after well. And, he may try to sulk when you take him home...think of it as a toddler trying to punish you. The NEXT respite you will feel guilty for a day or so, but remember to try to think of other things when that happens. By the THIRD respite, you will understand how much your mind and body NEED it and that it is fine and he is fine and if he goes downhill a little, he would have if you were with him.....
After a year of respites, I CAN'T WAIT FOR RESPITE!!! <grin> We are both much better for the respite, plus it saves me daycare money which has allowed me to keep him home with me the other three weeks a month.
As you all know, I worked in Special Education for 25 years. In the beginning of my career, I worked with the little ones. Ages 2 1/2 - 6. They were severely mentally and emotionally handicapped. Many of them threw wild, uncontrollable temper tantrums that resulted in injury to anyone standing in the way, including teachers. It was exhausting and draining, BUT I got to go home at night to my normal family. I once asked one of the parents with whom I had a very good rapport, how she managed. Her 4 year old daughter was autistic and despite all attempts at professional intervention, behaved like a wild animal. The mother's answer was, "She's my daughter. She's my blood. I do what I have to do and don't think about it. It becomes normal for me."
That is how I see it with Alzheimer spouses. They are our spouses. We love them. We do what we have to do, and it becomes normal for us. We don't consider it heroic. It's just something we do because we love them. We do it until it becomes physically and or emotionally impossible.
On my first respite (for nine days last month) I felt very bad after I had taken him in and left him. Especially since one of the other residents had been very nasty, saying he couldn't stay there, she couldn't deal with another person (the aides told me she regarded the facility as her property and thought she was in charge). For the first time I cried over the phone to a friend who called to ask how it had gone. In the evening I called and he was fine (and the other resident had accepted him completely). And the next day I got on an airplane and was remarkably free of guilt and worry all the while I was visiting my mother -- a completely different world to be in. Maybe that's the clue: organize something that gets you out of the routine.
My husband is in a facility but I am still his primary caregiver. I love him, he loves me, life is what it is. End of story. I am not strong or a hero. Like the rest of you just a spouse doing the best I can with what life has given me. Jeanette, there is a lady in Charlie's facility who gets on a kick about once a week that she owns the place and she wants everyone else out, especially the men (and especially Charlie). One day last week as everyone was moving into the dining room for dinner she asked Charlie and I if we would like to come and have dinner with her and her husband (who has been dead for years). I politely declined but had to chuckle.