Recently, I had a conversation with a friend about caregiver resilience, and I said that I think it's a key issue in surviving this role. We wondered what one can do to make it happen. Then, coincidentally, I went to a lecture by a palliative care doctor and her topic was general stress--and how to build resilience so that one can bounce back when faced with stressful situations. This is what she recommended:
1. Watch out for negative self-talk and replace with positive. (I remember chanting to myself "You can do this.") When you catch yourself thinking something negative, ask yourself "Is it true?" "Is it helpful?" 2. Practice gratitude (I think we've discussed this here before--i.e., be thankful for the things your LO can still do). 3. Seek connection with others (one reason this website is so great). 4. Sleep 5. Practice reframing (making lemonade out of lemons). 6. Take the long view--something that seems big now may not later. (To me, this is the same as don't sweat the small stuff. Again, we have discussed this before in terms of some of the dementia behaviors.) 7. Exercise 8. Put things in perspective. 9. Mind/body techniques. 10. Learn how to practice relaxation breathing. 11. Mindfulness (living in the moment). 12. Healthy eating
One I would add. When you DO get some respite, take you mind OFF the disease, and if you are with someone, try not to talk about it. This is as I await to hopefully get some time.
Over the years I've learned these things by doing, but I find it more useful to think in more specific terms. For example, under either "Practice reframing" or"Putting things in perspecive"---Some things are no big deal, "If I can't see it; it's not there" (top of fridge or under bed". Also--perspective--picking battles--who cares if the clothes don't match--he has them on. Practice gratitude--one of the best gifts you can giveis b eingagraceful receiver. No,."You shouldn' have..." That steals to good feelings of helping for the giver. Sincerely saying "Thank you."is a gift. And mindfulness. Living in the moment which can also mean realizing there will always be more to do than can be done in this moment.Do the most important. The rest will be there when you get there.
I'd add a #12. Retain self time. No matter what keep (or reclaim)some time for personal interests and/or pleasures. This is not selfish, it is self-preservation. When the LO was healthy; the kids growing up (if you had them) they didn't suffer because you did things for yourself. They thrived and so did you. How you manage that will change, but the results of doing it won't. The CG and LO will both benefit from this.
ms. magic-why don't you give your shoes to those who think you aren't coping well and tell them to walk in them for a while. Marilyn-really great creedo.
I find these suggestions very helpful and try to practice most of them. I would like more info/examples of the mind body techniques. Thanks for sharing them with us.
Meditation Prayer Yoga Biofeedback Guided Imagery (what is that, you ask?) The best way I can describe it is that at the end of a yoga class, we lie on the floor, lights turned down, and the instructor narrates a trip to a beautiful beach, in a soothing, calm voice. It's a very peaceful experience.
oh...thought it was something like "If you don't mind, I have the body"... .I don't like Yoga....but Youplait makes some pretty good ones. And Biofeedback??? Is that like an instructor telling you about a beach and you get a really bad sunburn??
Marilyn, very good list! Except for number 7, I can say that I applied those steps - and my respite (which I preached here to everyone once I discovered how much better I felt and was able to take care of my spouse afterwards), so I managed to come through okay.....I'm still avoiding number 7. <grin>
Phranque--glad to see you are still breathing. Of course, a phrase like mind/body would capture the male attention :)
Mary--the word exercise was mine, the doctor said "move your body", which is perhaps a better term? Could include dancing, walking at a mall, things most of us actually enjoy! (Uh oh, I see this as another opportunity for a comment from Phranque.)
Marilyn currently reading a book on Chronic Stress and Cortisol. Chronic stress is what can do Alzheimer Spouse's in. The book laid out pretty much all the things you described at the beginning of this thread. The book did talk about about the need for daily breaks, something that seems impossible to achieve but something I think we all need. It also mentioned exercise in 30 minutes increments.....again something to work towards. When I did exercise I did find the day easier to handle, now with having to go home each day for lunch my hour each day is gone :( So I ordered a Surrey bike with gears. It arrives thursday of this week, I will be able to put Hubby on bike and peddle the neighborhood and get some fresh air and exercise........trying :)
Terry54--You are right about chronic stress. This was interesting--at the talk I attended, the doctor started off by referencing a study that was done on caregivers, the results of which showed that chronic stress can be lethal. She didn't say so, but I recognized the study as one done on dementia caregivers in Utah that showed higher rates of illness and death for dementia caregivers than people caring for patients with other illnesses or the non-caregiving control group. I asked her after the talk if she was referring to the Utah study, and she said she was. Her comment was "This study showed that stress kills."
I hate to sound morbid but I believe the ability to survive as a care giver requires, first, the acceptance that there is no good outcome other than a peaceable passing that can be anticipated. Second, accept that,at the moment, this is an incurable disease. Third, once you've obtained the initial dx I've found little value in dragging my DW to a Neuro. As all he can do is run the same depressing tests and document her decline DUHHHH I could have told you that. The anticipation of the impending MD visit and the stress incurred are well documented here, nothing ever chanes for the patent. Get a good Primary, one who know you and treats a significant # of geriatric patients. There are a limited number of drugs suitable for treatment of AD symptoms and every primary knows the protocols. Most dramatic changes in behavior almost alway require a trip to the ER, better a hospital where your PCP is onstaff Particlaly when your neuro is miles away and isn't on staff where your LO is,in the ER
Learn what to overlook! if they want to rummage or wander from room to room, rearrange things don't even think about it, neither you or your loved one can contol theses urges. Don't waste your mental or physical energy. When accidents happen, again aggrivation is wasted energy, better to know that accidents WILL happen and all you cans do is to be totally prepared with cleaning materials placed strategically throughout your home In key locations. You cannot prevent accidents but you can make clean up easy if you're prepared.
Don't be a victim. The whine they don't call back is unacceptable. The don't return a call. Haunt them, fax them, call the supervisor call the state be relentless. It's good venting anyway
The key to surviving caregiving for me, and this is the second time I held the dubious title of AD Caregiver is to accept reality, employ any mind body, exercise, etc. and worry only about that which you can control
Last week Bama gave me the opportunity to relive (as she wrote about her maybe prospective move) the times I spent in that part of the country. It was good to remember good times.
This week I got the same from your post. It made me remember when I was in training and when cognitive behavioral training (or therapy) was in focus.
I agree with everything you said. I remember that "act as if" was pretty much a mantra as well as "if you fail to plan, you plan to fail". I have done this, pretty much every day- you know how when a CG starts to wake up- well for me anyway, sometimes you just feel that the day ahead is going to be tough(er). So, I do this: I think about a time when H was well, and something he did that was good, or nice, or well, just nice.
Then, I also think about something I will do when this is over.
Does this do any good? I don't know, but for me it seems to humanize all this.
It is just my little effort because I usually wake up thinking, why me? This is closely followed by why H? As mentioned, he is a poster for how can this be?
Excellent comments, Nelson. I agree. Same is true on the "other side." I knew the outcome; prepared as best I could. Friends ask me how I'm doing with lowered, sad voices. I say "fine." They repeat question. Some seem not to be able to accept I'm not a basket case in mourning. I mourned long ago and daily.
Nelson wrote: "The key to surviving caregiving for me, ....is to accept reality, employ any mind body, exercise, etc. and worry only about that which you can control." I agree.
Bluedaze* excellent point and one my ulcers agree wholeheartedly with!
Abby, I really enjoyed reading your post. I too upon waking take a moment to reflect on some positive things. If I didn't do that, I would never get out of bed.
Marilyn, thank you for this post. We have talked about how we must change and accept this disease and all it destroys., etc etc, but it is good to read some hints that can help us, the caregivers. I thought after all these years I would have implemented every possible avenue for helping me cope. But I do see some that you listed that I do not do, or certainly could improve on. Numbers: 1, 2, 5 and 11 are the only way I have survived thus far.
Bluedaze, Nikki My point is: we've all got X amount of energy or ability to cope. Better to spend that energy where you can have an effect. Try dealing with everything and the result is guarantied: You'll end up with System Overload, Caregiver Crash, burnout and depression. Whatever label you choose it doesn't matter this is our reality and best we deal with it as efficiently as possible to ensure our own survival and ability to care for our LO's What is key is to comprehend that by trying to deal with everything, you accomplish less, because you've dissipated your strength unresolvable tasks Think about it, what have you accomplished by worrying about things you can't impact. All you accomplish is to assure yourself a pathway to self destruction and membership in the "Woe is me" club. We're talking about how to survive mentally as well as physically. By dealing with that which you can impact the outcome on, you've accepted the truth that everything you can't alter what is going to happen, no matter what you do. Better not to waste the energy chasing rainbows?
I'm all for and practice the mind body routine, I do a 5 day a week workout of stretching, Tai Chi, riding stationary bike and light weight work. I am fortunate to have facilities right here in my condo and bring DW along with me. She sits on a mat cross legged doing her Buddha impression all the while lost in the world of 60's R&R.
Excellent post Nelson..............learning that Alzheimer time is where we live for now. Living in a life of Chronic Stress is deadly to the caregiver. I just of late haven't been good at transitioning from the real world and speed and my Alzheimer world while working full time. But exercise and sleep and staying away from sugar help to give me some balance. And having towels on the bathroom floor always helps. Realizing that the brain's total comprehension is broken/gone when he looks so normal .....when I get that through me thick head my life will be easier
Hi Nelsons, I had little time this morning as I was in a rush to go spend the day with Lynn, so I didn't have time to read your previous post. I wasn't disagreeing with you, I am sorry if it appeared I was.
Your points are valid and we have talked about this here at Joan's many times in the past. Being that you are relatively "new here" I can understand why you wouldn't know how often we have discussed these very things, nor that I have never belonged to "the woe is me club." As I have said before, I don't question why me, it is more logical to my mind to think, why not me.
I do however agree there are some things one can not help worrying about, even if you have no control and it does little "good". For instance, watching my husband suffer a 104 temperature, being pack in ice for close to 5 hours, and needing 100 percent oxygen for 18 hours.... are perfect examples. I had NO control, but you can bet I was worrying!
Nikki if you didn't worry at a moment like that you wouldn't be human. If you weren't frightened you wouldn't have the love and caring for your husband that is such a key part of caregiving for many of us here.
I sense you know full well situations like this are not what I was referring to, but felt a need to make it clear everything is not B&W. I understand.
I've shared a similar experience. i know words can't describe my range of emotions experienced during a 12 hour long surgical procedure. One when the surgeon's last words were: "remember no guaranties." I am sure, like me, you'll never share the full spectrum of thoughts that raced through your mind during those hours /days/ nights of crisis, sleeping on hospital chairs designed by the Marqis d'Sade and the ensuing fleeting 5 min every hour visits to the sanctum of the ICU for 3 days. When DW was stepped down to level 2 iCU on the forth day, I finally left Jackson Mem in Miami ...the sunlight felt wonderful, but there I was stuck on #95 in rush hour morning traffic ugggg
Everyone's situation is different. Can't paint this with a broad brush. Some have spouses who are docile, while others have spouses who are angry, resentful, difficult to control. Some people work and have aides, some are stay-at-how caregivers, some have spouses in ALFs or NHs. Some people are financially secure, others worry about how they'll pay for their meds.
I am always hoping to find a place where people are tolerant and understanding - like this board.
When my husband says hurtful things to me, I would love it to roll off my back. I would love to intellectualize it all, saying, "It's the disease, not him." But you know what? I'm only human and I have feelings and I hurt when that happens. I like to be able to come here and express that and know that others understand.
It's the disease, not him-the words most of us have come to hate. We know it's not their fault-but it's not ours, either. There is so very little we can contol with this disease-but it still is up to us to try to manage everything. In the end we all lose everything.
ms magic, you are so right! Even though we are all dealing with dementia of one sort or another everyones situation is different. There are alot of situations that we have in common, & I must say that I feel the same as you as far as the hurtful things my DH has said to me..... no matter how many times I say in my head "it's not his fault" it still hurts. Pretty much everyone here does understand.
ms. magic I hear you loud and clear. We are all so different and some have our own set of issues that can only add to our stress. Having lived with the aggression and abuse, I get what you are saying. It does hurt, a lot. ((Hugs of understanding))
Nelsons, I missed your story about that particular ordeal with your DW, indeed I can imagine how frightening that was!! You are correct that no, I do not nor could I share the full gamut of my emotions. And yes, not everything is simply black and white. There would be so many variables to how we each handle any situation. Even the same exact situation would be different for each of us as our circumstances would not be the same.
I agree with the logic behind the thought, and I agree with the whole idea of "don't sweat the small stuff"... but I have also come to believe we can not possibly know what another is going through.. nor can we accurately judge what is worthy of worry. What might be small to me, could be monumental for another. I also believe we each just do the very best we can in this impossible situation. No right or wrong, just give it our level best.
Having said all that I will admit I am a worrier by nature….because Lord there is just so much to worry about! It must be the middle child syndrome haunting me again <smiles>
Nikki- middle child syndrome....me too! I am getting better about not worrying about EVERYTHING, but I still worry! As for saying what we could, would, should, do in any given situation (before we are actually in that situation). Something happened in my life years ago & I did something that I thought I would NEVER do. Sparing you the details, that experience taught me to NEVER tell anyone what I would do in their circumstances because until you are in their shoes you really don't know what you would do. As for the advice here – it's great because it's always a suggestion & usually from someone who has “been there done that “.
I thought the start of this thread by Marilyn so important and a wonderful reminder I thought I post a story about the bike and bring it back up for the new people joining. So we got this Surrey bike. After much effort to get Hubbys booty on the bike we were off for our maiden voyage. I deemed the bike the "SS Forgetmenot" .....wanted to go with Titanic but it's already been used. So off we go......the bikes 200 lbs, Hubby 200 lbs and me I am know light weight either. We are riding along .....a mile or so ..........and Hubby stops peddleing. I am peddling my fool heart out and Hubby turns to me and says "this bikes not working, we are hardly moving"...... "REALLY!!!" I said. " Maybe if you'd start peddling we might move faster". He's still not peddling and says "why do I have to do everything" Well I really couldn't stop laughing. We have been out 3 more times and we repeat this same story. Way to funny, so I am getting exercise and comedy all at the same time.