HOW DUMB, EGOTISTICAL, STUBBORN, AND PIGHEADED CAN WE BE?
What is the matter with us? There is something not happening with us and it is down right dumb! As smart as we are as caregivers, caring for our LOs, tracking research, supporting each other, etc., etc., etc. we continually say, “Take care of yourself or you won’t be able to take care of your LO.” BUT WE DON’T DO IT! There are some truths which need consideration: At first we get bogged down in getting a Dx, dealing with meds and financial matters, plus learning to take charge of our LO’s care. Reasonable and understandable. But then, we lock into some thoughts and behaviors we never did in our earlier years. We don’t get respite help or otherwise take time for ourselves. Our LOs won’t like it and will be unhappy and/or act out. We aren’t comfortable with “strangers”in our home, taking care of our LO or doing housekeeping chores. Know what? When we worked we took time off and “strangers (temps?) filled in. We hired sitters for the kids and went out, or spelled each other so we could get away. Work had schedules for this and our kids might not have liked it, but they survived. WHY IS IT DIFFERENT NOW? No one can care for our LOs as well as we can. Guess what! We are not indispensible. If lightening hit you tomorrow, your LOs care would be provided by somebody else. It wouldn’t be the same but your LO would adjust and survive. The fact that we are here as caregivers doesn’t mean we have to do it all ourselves. It means we have to see that it all gets done as well as possible. Just because you are able to do all chores doesn’t mean you should be doing them all , if having help lets you get everything done better and spend more time on the things ONLY you can do. Accept help and delegate. Time limits on “ME TIME” limit or negate the benefits. TIME OFF from work had to be scheduled and had limits, but we enjoyed our vacations. An evening out without the kids had limits, but we enjoyed it. Our benefits, or lack thereof from a break are OUR CHOICE. We set up a good substitute Caregiver and trust their care for x number of hours, just as we trusted sitters with our kids and temps with our work. Time Off is a lot of work to arrange and it’s too planned—not spontaneous. Vacations from Work are scheduled and planned down to the details—where to go, how to get there and back, where to stay, what to see, what to do… As a couple raising children you scheduled “ME TIME” and “OUR TIME”. You covered for each other and/or hired sitters to make these times happen. You planned where to go, what to do, supplies to bring, etc. It’s always been that way. The situation is not different now. And then we wonder how we will ever reenter the “normal” world when our time in the AD world is done. The way I see it, if we did what we tell each other to do, we’d still have connections in the “normal” world. A half day of respite should cover 9 holes of golf; some hunting or fishing (if you don’t have to go far away); a pretty good browse through a bookstore, zoo, museum; or craftshop. It would cover a volunteer stint at the zoo, museum, hospital, school, or church. It could cover attendance at a social group: Garden Society, Sportman’s Club, Bible Study, whatever. Respite costs etc. make it impossible. This takes work, but besides relatives and friends, there are agencies and programs that some times help--you have to track them down. Transportation is easy if you drive. If not, there is your public transportation, and often if you speak up, you can get a ride with someone, or offer to pay the gas or admission in exchange for the ride. Instead of taking care of us, we perch on the edge of the abyss or keep slogging through the AD tunnel, allowing, even helping AD in pulling us under too. HOW STUPID IS THAT? How egotistical to think we have to do it all ourselves in order to do it best? Our LOs deserve better from us. They deserve to be cared for by the person who cares enough to give the best of themselves to the job by being the best they can be at it. We have to do the work to take care of ourselves so we are the best for our LO’s.
Today has been an interesting day. Most of it relates to "Me Time". This morning I took DW to day care and went to the Y to exercise. When I got back to the locker room I had a message on my cell phone from the Free Clinic, of which I am Medical Director. They wanted to talk with me about problems with one of the doctors (who has Alzheimer's, but is still able to work - he says) The clinic is right next to the Y, so I went over and talked with the office manager. When I got home I got a call from one of the other board members, who had heard about the problems. I called the doctor involved and got his side of the story, then called back the board member to say that the doctor would be at the next board meeting. In the meantime I had to do a major food shopping. About 2 PM I got DW from the day care and relaxed at home for a short time. I had to cook dinner tonight since I had a Mission Board meeting at church, which meant we could not eat at our retirement Inn's dining room. After dinner, a caregiver arrived to be with DW while I went to the meeting (a 1/2 hour drive, each way). It's now 9:30 and I think I'll go to bed. I'll type up the minutes of the meeting tomorrow (I am secretary). Oh, I forgot to mention that I got a phone call from both of our daughters during all this.
Question: Was today taking care of myself, or was it too involved and stressful outside of taking care of DW????
I suppose I am on a respite of some kind this week, I am on a four day business trip in Connecticut. DW is being taken care of by her sitter during the day and her daughter overnight. The schedule we are keeping is pretty intense, I am enjoying participating in the presentations we are making and getting the opportunity to spend some time meeting and conversing with some normal people.
You never fully escape the duties of the caregiver, my daughter called me earlier this evening to tell me that DW was having a difficult day. She is acting like she is having another UTI. DW called me while I was having dinner with my co-worker and decided to unload on me for not being home, ignoring her and telling me not to come home and to just stay up here. So to paraphrase " a caregiver's work is never done".
Daughter will attempt to get a urine sample and take it to work with her at the Doctor's office and get her an Rx for an anti-biotic. Do I really need this stress, I doubt it but it comes with the territory.
I’ve been thinking about this idea for a while myself. From time to time I remember that there are two people in this house, but only one of them is getting their needs met on a regular basis.
My DH was diagnosed at a fairly young age, and there was absolutely no help available anywhere until he turned 60, which was six long years. The social worker at the Alzheimer’s Association even helped me look for some sort of assistance, and she couldn’t find anything, either. We were barely keeping afloat financially, so paying for any sort of care ourselves was not an option. We have been working now for over six months to get a Medicaid waiver to get some in-home care so I can get out enough to get to the store or the doctor myself. We don’t have children, and siblings are states away, so I’m pretty much the Lone Ranger Caregiver.
I really like the idea of taking care of myself, too, but the resources of our household don’t extend that far. But I still do wonder how much longer I can do this before I collapse. I’ve tried to plan for DH’s care in case of emergency, but one day I decided that if I’m dead, I can finally be off duty. At that point somebody else (yes, we do have all our legal papers in order) can take over.
Last week I attempted some respite care. I arranged for DH to monitored each day and people to stop by. He refused to have anyone stay with him...or him stay with anyone. Yes. it was a constant phone call wanting to know when I was coming home. I was 1800 miles away. THEN...he called me to tell me one of our dogs was sick and he was taking him to be put to sleep!!! A call to one of my daughters and she got to the house and convinced him the dog was just fine...only tired and sleepy!! Needless to say my respite was only somewhat helpful! I wanted to see my sisters one more time before i was totally confined to the house.
marsh--you are doing what I'm talking about. The exercise time, the Free Clinic involvement, the meeting were all your time. Alz was involved with the Free Clinic time but it wasn't caregiving. A busy, tiring day but there was time for you, and in the "normal world">
jimmy--Your days on this business trip are also what I'm talking about. Your DW is cared for. You ar involved in the "normal world" both working and socializing. Your daughter's call, updated you, and let her be reassured she's handling things (she doesn't do this much caregiving under usual circumstances). When raisinbg kids, we'd check in with the sitter, while gone--same idea.
JanK-- I do understand the limitations you're facing. Keep working for the waiver. Also, check with your church and others, with Senior Neighbors or other Senior Service Organizations. Call the Alz. Assn and tell them what you've said here. As far as costs--there are lots of free things avaiulable. Events at the Library, Zoo, Museums, craft shops, etc. At least you drive, don't you? Try the same scenerio with out that.
Grannywhiiskers--You did great! You did the trip. You worked out care. Your respite wasn't perfect but it did help. You dealt with his DISLIKE of your beng gone--and that's what it was. You dealt with that with your kids, and you can deal with it wih him. Don't let his reaction stop you from taking time for you. In fact, make the effort now to do so regularly, and he'll get used to it. Alz cannot be allowed to entrap us and bring us down too, and we certainly can't help it do that by feeding its demands that we bow to every isolating demand.
Carosi, I would love to print your vent and stick it up on my fridge! Way to go!! Its a great reminder and a motivator to take those self preservation ACTIONS...We can do this, but it is so different.
So completely different that we even use the word RESPITE instead of vacation or an afternoon of golf. I never knew what that word meant 9 years ago We can do this, and you are right. But reading through the comments on this thread shows just how complicated and how challenging it can be to grab that time away.
Is it because these are our spouses? Is it because we are managing care for adults rather than our children or our parents? Is it because 'work related travel' is seen as a necessity but making the same preparations for respite is misunderstood as luxury? I just don't know.. What a great vent!!
I guess you'd say that I also had about a half day of "me time" yesterday, but my day was busy like marsh's, and I was so worn out and keyed up by the time it was over that it took me a couple of hours to fall asleep -- which is unprecedented for me!
It all started out innocently enough when my "second best sweetheart" mentioned a few weeks ago that her favorite food was grilled salmon, and somehow that got combined with our son's and great niece's birthdays yesterday and some of Sunshyne's earlier mouth watering posts about shaking olive oil and herbs over sweet peppers and grilling them, and before I knew it I had committed to grilling salmon, peppers, asparagus, and sweet potato slabs for a dozen people to celebrate the birthdays. I had contacted our local fish house in advance so they'd be sure to have about six pounds of nice salmon filets for us to pick up after noon yesterday, so I picked up my lady friend at 1:00 p.m. to help me shop for and prepare the other stuff I'd need for grilling. Cutting up the veggies and salmon and getting them to marinating kept the two of us busy until about 5:30 (well, we did take time out for a beer and later maybe a gin and tonic -- and I had to make quite a few potty runs with the DW also, who napped through most of this). I fired up our charcoal smoker just to have a place to keep the veggies warm after grilling them, and finally started actually cooking around 6:00 after all the company had arrived and been properly greeted. Although none of the veggies or salmon took more than a few minutes to cook, our gas grill isn't very big (two pounds of asparagus spread out over pretty much the whole grill surface, as did the peppers and then the sweet potatoes and then the salmon in turn), with the result that we probably didn't actually start eating until after 7:00 (by which time my lady friend's garlic bread was pretty much dried out and some of the younger folks beginning to run short on patience), and then two birthday cakes (brought by another friend) and opening gifts, etc. kept things going for another hour or so before folks started to go home -- and then there was a bit of imperative cleanup of things that couldn't just be left until this morning. BUT FUN!!!
Because I work full time at a job I love, surrounded by people who have become my friends and care about me - and listen when I need to talk, and distract me from my worries when I need to be gotten out of the doldrums, I AM SO FORTUNATE!!! I wouldn't want to do 24/7 like most of you do! The weekends are mine as are the morning wake up and dress duty, the evening hours and the nights (and he doesn't sleep a lot right now, so I get interrupted sleep all night, plus washing the bathroom floor once or twice). He's progressed to where he isn't very aware of what is going on most of the time, doesn't understand simple instructions a lot of the time (honey, let's sit down). He can still lift the fork and feed himself and walk. He needs help putting on his clothes, but can tie his shoes! It is so sad.
Marsh and GC, you guys had very full days! Thank you for sharing them with us! It makes us feel closer when we share more of our daily lives, I think!
I've been staying close to home on the weekends since the caregiver cruise. Tomorrow, I am getting a two day, one night vacation! My daughter has offered to watch my husband while I go to Branson (a 3 hours drive) with my friend just to get away (and buy things we need at the outlet malls!). This will be the first time I will have been away from him overnight, but I'm not worried. My daughter is 45, and she can handle her dad. I am SO looking forward to SLEEPING ALL NIGHT...I can't tell you how much! <grin>