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 "Take care of yourself" -- how? 
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: "Take care of yourself" -- how?
Irene, I understood what Leone meant and I did not take it as directed against forum members. But it never hurts to gets possibly ambiguous statements clarified. It is your job to head misunderstandings off at the pass. Thank you for doing it.

Leone, Julianne, and All, sometimes even professionals can be hard to take when they are speaking outside their areas of expertise. I think of the therapist who helped Coy after a hospitalization, when he was weak and confused. She told me that this was his new baseline. Fortunately I'd been through this before and I knew that it would have been more accurate and helpful to say, "With LBD, a patient will often return to the former baseline if the decline is related to drug reaction or illness. Or this could be the beginning of a more permanent decline." But I don't think she had any knowledge of LBD.

Today I saw the Lipids specialist at a cardiology clinic, who I've seen a couple times of year for several years. He is outstanding in his field and I trust his advice on the matters I see him for. But I've learned that he is not a nutritionist, for example, but that doesn't stop him from offering silly dietary advice that I have enough sense to ignore. Today I explained two new drugs I'm taking, prescribed by a psychiatrist. He proceded to tell me his opinion of psychiatry (not high) and assured me that I don't need one. I smiled broadly and promised him that I would not take advice on how to manage my lipids from the psychiatrist. He got my message and grinned. It is not only laypeople whose well-meant opinions we sometimes have to politely disregard, in order to take care of ourselves.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Thu Jan 27, 2011 10:03 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: "Take care of yourself" -- how?
Well done, Jeanne! :mrgreen:

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Thu Jan 27, 2011 10:10 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: "Take care of yourself" -- how?
Very well said, Jeanne. I'm having a dreadful time figuring out Dale's 'normal' baseline at this point. One day, he will be totally immobile and the next, he is walking unaided all around the house in a fog. One day, he sounds quite reasonable but I usually realize at some point that he is still delusional.

When his doctors see him, he is always on his best behavior. The only reason the neurologist agreed to consult a psychiatrist was that I made numerous phone calls in order to document what was taking place.

As I said, you have to trust your own counsel in order to stay sane. We live with them 24/7. We know them best.

_________________
Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Thu Jan 27, 2011 10:35 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3423
Location: Vermont
Post Re: "Take care of yourself" -- how?
From many of your stories, Leone, I think it's amazing that your husband can still perform a convincing showtime in front of the doctors on a regular basis. That is amazing! Frustrating for you, I am sure. But, the one good thing about it is that he is apparently not so bad off that he can no longer hold it together to do showtime. That may not be an easy to understand concept at this point, but I noticed that once my dad could no longer do showtime, his mental and physical abilities had declined A LOT! Looking back at when he was able to appear fairly well at his dr. appts., he was also able to do a lot more physically and mentally.
It's such a hard thing to deal with.... Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Jan 28, 2011 12:10 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: "Take care of yourself" -- the compiled list
It is time to finish my homework, and I thank you for your help. Here is the list I compiled. I combined a few similar suggestions. I generalized some personal examples. I reworded a few. I hope the gist of what you said is represented here. I added a few more of my own. The numbers are just for reference (so we can refer to #4) and they do not imply priority or importance.

I have this list in a table, with 2 additional columns. One is for me to check off the ones that are applicable to me. For example, I don't drink (more's the pity) so #13 won't be checked. And I already have a suitable pillow, so I won't check #6, etc. The second column is to narrow the applicable ones down to what I'm willing to focus on right now. A list of 27 things to do might seem overwhelming. But 3 or 4 now, and another handful later, etc. seems manageable.

I am also going to make some of them more specific to me. For example, #3 for me might include check my blood sugar more frequently, and monitor the carb content of snacks more closely. #14 is going to translate for me into "Send greeting cards and notes to elderly aunts," "Email cousins more often," and "Have lunch with friends at least once a month."

What do you think? Did we do a good job?

And I'm curious. Did anyone see something new they might start trying? I did!

1. Get more exercise. Have some physical activity each day.
2. Take pills on time each day.
3. Get medical and dental checkups and follow advice given.
4. Take the time to nurture yourself with healthy food.
5. Get enough sleep.
6. Find a pillow that suits you.
7. Get outdoors often.
8. Get and take meds as needed for anxiety, depression, etc.
9. Don't keep trying to lift/move your LO beyond your capacity.
10. Drink an 8 ounce glass of water every morning first thing.
11. Pay attention to hydration needs.
12. Don't forget the dark chocolate.
13. Enjoy a glass of wine.
14. Maintain connections with friends and family.
15. Communicate with friends and family about what you are going through, if that is comfortable and they are receptive.
16. Find a support group, in person or online, to communicate with people who will understand and not be bored.
17. Reserve time for your own interests and arrange respite care for that time.
18. Find safe ways to vent frustrations.
19. Use a caregivers’ forum or support group to vent.
20. Decorate for holidays.
21. Reduce and manage the clutter in your environment.
22. Accept help when offered. Have specific suggestions when people ask what they can do.
23. Keep your hair neat and the way you like it.
24. Don't let anyone make you feel guilty.
25. BREATHE!!! - take a few long, slow, deep breaths when you are in an anxious state.
26. Look up - really, look up towards the ceiling or sky.
27. Do something with your hands at least a little bit each day, (make bread, sew, draw, something that you enjoy).
28. Do something cerebral, like puzzles, games, reading, riddles, etc each day.
29. Do something creative each day, such as music, arts, crafts, dance, etc., even if you can only get 5 minutes in.
30. Close your eyes and picture yourself in a place you've been where you felt at peace, or a place you'd like to go sometime that seems like it would be very relaxing.
31. Get a yoga or other calming sort of exercise video.
32. Let the wind comb your hair.
33. Find something or someone that will make you laugh or someone that you can make laugh. Laughter is wonderful medicine for the heart and soul.
34. Have some "my" time each day.
35. Don’t let busy-bodies intimidate you with their opinions, especially if they are uninformed and unqualified.
36. Try to react to the intentions behind people’s suggestions and advice, and not the content.
37. If all the options in a situation are stressful, choose the lesser stressor.
38. Tell your own doctor about your situation. Caregiver Burden or Caregiver Stress is an actually recognized diagnosis.
39. Look for a therapist for yourself, and don't be satisfied till you find one who truly eases your psychic pain.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Last edited by JeanneG on Mon Jan 31, 2011 2:10 am, edited 2 times in total.



Fri Jan 28, 2011 1:43 am
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: "Take care of yourself" -- how?
Nice list. I like it and will use it. Thanks, Nan


Fri Jan 28, 2011 1:57 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: "Take care of yourself" -- how?
I've gotta get back to reading the forum more often. I have one more item, even though it can't make the list.

Tell your own doctor about your situation. Caregiver Burden or Caregiver Stress is an actually recognized diagnosis. It's not just that you are tired and upset. You actually have a recognized syndrome. My own doctor has made this diagnosis - actually made the diagnosis before I recognized it. Because of that, she has helped me to stop crying at work and a bunch of other things.

I love the list of relaxers. Now I just need to convince myself that I have a right to the time to follow through.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Fri Jan 28, 2011 2:35 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: "Take care of yourself" -- how?
Great list, Jeanne!
Kate, I think one reason I love our primary care doctor and neurologist so much is that they both see me as a "co-patient" with John. What a difference that has made to me and, ultimately, to John!
Pat

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Fri Jan 28, 2011 9:40 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3423
Location: Vermont
Post Re: "Take care of yourself" -- how?
Good point. My GP has known about my depressive and sometimes anxious state from being a CG for a while and convinced me to take some meds as needed. My cardiologist & obgyn also said "Ah Ha" after they asked what had changed in my personal life & I told them about my dad. Both said "you have stress-related issues that need to be taken care of NOW which may or may not go away once he is no longer suffering." I'm now off the beta blocker. I felt so supported by theses 3 doctors who do recognize the health issues created by the stress of caregiving. That alone can make you feel better. Glad this will be another thing added to the list, especially for newcomers. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Jan 28, 2011 10:02 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: "Take care of yourself" -- how?
My PCP, oncologist and Frank's psychiatrist always ask "how are YOU". They encourage me to have a caregiver come 2-3 times a week. Right now I have someone for 4hr one day a week and another woman that I can call if I want to attend a game for my grandson, she has been a life saver because she is available at odd times with no contract.

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Fri Jan 28, 2011 11:01 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3423
Location: Vermont
Post Re: "Take care of yourself" -- how?
That is so helpful Gerry, isn't it? Knowing that others know how hard it is for CGs makes us feel so not alone and kind of validates why we feel so tired, stressed, sick and so on. I'm glad you have some respite care coming in. Good for you! Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Jan 28, 2011 11:06 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: "Take care of yourself" -- how?
Gerry,
I think for some Just knowing they have someone they can call on if needed is such a big help, it removes that trapped feeling caregivers often get !
Its also nice to know that the doctors care about your well being too and I do think doctors are looking at that more and more today then they did years ago !!

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Irene Selak


Sat Jan 29, 2011 11:31 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: "Take care of yourself" -- how?
I've edited the list to include Kate's addition, so if someone wants to print these suggestions in the future they will be all togeter.

Here are the 5 I've picked to focus on first for myself.

1. Get more exercise. Have some physical activity each day.
2. Get enough sleep.
3. Pay attention to hydration needs.
4. Reduce and manage the clutter in your environment.
5. If all the options in a situation are stressful, choose the lesser stressor.

I think this is the one my therapist wants me to focus on:

6. Accept help when offered. Have specific suggestions when people ask what they can do.

Thanks for all the good suggestions!

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sun Jan 30, 2011 3:24 pm
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Joined: Sun Oct 17, 2010 2:06 am
Posts: 63
Post Re: "Take care of yourself" -- how?
I'd like to add another one: look for a therapist for you. And don't be satisfied till you find the one who truly eases your psychic pain. My internist insisted on it when I told her what I was dealing with. The internist gave me a couple of meds for stress and insomnia, which have been helpful, but the therapist listens, understands, and has pulled me out of more than one funk.


Mon Jan 31, 2011 2:06 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: "Take care of yourself" -- how?
I don't have a therapist but my sister is my 'escape valve.' When Dale gets totally out of control with delusions and into his 'terrible twos' behavior, I call my sister and she can talk him down from it. She has done it literally hundreds of times. I realize that not all sisters have that gift ... but I'm glad mine does. Oddly, we have not always been that close but the death of her husband to cancer two years ago cemented the bond between us that currently exists. Dale trusts her and remembers her name even when he can't remember mine. :roll:

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Mon Jan 31, 2011 7:10 am
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