How do you cope with the day in and day out of caregiving?

ghphotog

I know the stereotypical answer is supposed to be things like yoga, meditation, exercise, breathing. . . etc. 
My coping methods are not that, except for exercise. I do walk a lot, otherwise, not on that list.
Just curious if I'm the only one not doing it right.

Dio

I'm definitely not the model caregiver. None of those things worked for me. I found that if I cried my heart out and let out some built up pressure, then dried the tears and stopped feeling sorry for myself, I would get through another day.

Rick4407

GH I don't think there is a "right way" to get through it.  Each of us has to figure out what works for us.  I'm a "one day at a time" method.  Some days it's just the next event to get through.  Breakfast, then count down to lunch, then pill time, then dinner, then bed time.   On Mondays we go to Costco, Wednesdays I take the trash out to be picked up, if we need anything at all its a quick run to Kroger in the afternoon.  Every so often there is a Dr's appointment.  It's 2 hours from getting up to lunch, 5 hours till pill time, 1 hour till dinner, and 1 hour to bedtime.  That's as far ahead as I look.  

It has been a struggle for me. I was a pilot and traveled at about 7 miles a minute.  I had to always be looking ahead and planning, not now!  I look at each task and the time until the next one.  Good luck, Rick

Lorita

I agree with Rick that each caregiver has to find what works best for them.  We lived on a ranch so for me it was getting outside with nature or sitting among the cattle or sitting on my favorite tree limb.  Each day it was one of the three, maybe twice a day.  Some days I didn't need any of them.  It's  trial and error until you find what works for you.  Some days you have to take it hour by hour or five minutes by five minutes.

Good luck.  Also, try posting to let out your frustrations.  We've been through it or are going through it; ask questions if need be.

Cherjer

Hi gh... My dh paces, says my name a hundred times a day along with "I want to go home" constantly. I have tried so many places for him...day care etc. I am trying to avoid placing him in MC at least for the next few months or longer. My relief is that I have a caregiver that comes three times a week for 5 hours and another caregiver comes on Sunday so I can go to Mass. She is not able to come every Sunday but when she can it is wonderful. I really get a boost having someone here, and I completely disappear...my caregiver knows my needs!!

My daughter-in-law has offered to help when my caregiver has to go out of town. I am thankful for that. I just had a really hard week trying to figure out meds and what works and does not work. I was ready to quit every med dh takes as I did not see anything helping him...but I calmed down a bit and decided to try a new med dr. suggested and throw out the ones that were not working. Who knows what will happen...fingers crossed.

I would really suggest you have help coming in...I know it is expensive but you have to have some relief. 

Cheryl

Sally56

Gh, so sorry we all have to meet this way. I have a notebook I write in. It gets it out of my head. Writing is better for your brain than hitting keys on your phone. I do cry and then right what is going on. We all have to do what's best for ourselves. It is so hard. We are all traveling together and I do care to help you make it down the path, post when you can. one day at a time or even minute by minute.

Beachfan

GH,

I am in Rick’s camp.  Once I accepted my (and DH’s) lot in life, caregiving did not become any easier, but a pattern fell into place and I plodded on, one day at a time.  I could leave DH at home, alone, for up to 2-3 hours without repercussion to indulge myself in manicures, pedicures, facials, massages, with an occasional quick library visit.  I considered myself the model caregiver and DH an “easy” Alz patient until my kids pointed out that I essentially had no life, went nowhere, did nothing, and spent very little quality time with family and friends.  DH was placed in a MCF almost a year ago and I have started to reclaim my own life.  I wish I had been able to keep DH at home until forever; I had planned to, but to be honest, I was tired and didn’t want to do it any longer.  So, I guess I have no answer to your question, just empathy and admiration that you are able to continue caregiving.  I will own my weakness, if that is how it’s perceived, but I know that I gave all I could until I couldn’t anymore and DH and I are in a better place.  Stay strong!  

saltom

For the last four months DH has had to have constant supervision. I cannot leave him alone at all. I do have a caregiver in for four hours twice a week so I can get out with friends and grocery shop, but I do find having to be careful even to empty the trash is very confining. We have just started Hospice which may give me a bit more respite. DH has heart and blood pressure issues that causes him to be very unsteady balance wise. The Hospice is for this issue not the dementia, but the dementia makes him very forgetful and angry of the requirements to ask for help if he wants to go from one room to another. He is also getting quite delusional.We have a wheel chair so there is less chance of a fall than a walker. He can only use the walker if there are two people in the  house, one to hold the gate belt and one to follow with the wheel chair in case his legs begin to collapse. A long preamble, but one of my coping measures is to read this forum and see how other people cope with caregiving. And I have been able to get in 40 minutes on a stationary bike most days which sort of lets me clear my mind.

PookieBlue

My pets wake me up several hours before my DH gets up. That’s when I have my me-time. I try to keep the day as structured as possible when he gets up. Give him his meds, fix breakfast, etc. He gets his newspaper each morning and reads it. I’ve learned over the years what his anger triggers are and do my best to avoid them. I don’t really have a life, but try to keep things as normal as possible. I do lose my patience periodically and leave the room to gain some control. He can do mean things, but always apologizes even though he cannot remember what he did. I take him with me to run errands and grocery shop. I play the piano as a distraction and enjoy easy-listening music to keep my environment calm. I have been painting the house exterior and have been power spraying the concrete to help my mood. He comes outside to see what I am doing quite frequently. I am always nearby to help him. I get my hair done every 8 weeks and he is alone for 2 or 3 hours, usually napping or watching the news. He has trouble with the TV remotes and has avoided ever using any computer. He worked in Operations at Physician’s Mutual in Omaha and also some programming for 14 years, but hasn’t touched a computer since 1984. He still likes to watch Seattle Mariners and Seahawks, and Nebraska Cornhuskers so I find those to entertain him. He is probably stage 6 and doesn’t remember my name some days, but always calls me Sweetie. I just take each day as it comes.

mnm

I'm new to this forum (and Altzheimers.org).  My husband has not been diagnosed.  My life is centered around him and his care.  It is increasing and I can't see any way that's going to change short of a huge medical emergency.  I have my sewing to keep me sane, and recognize that I need to take care of myself, which is extremely hard.  Even getting a good nights sleep is challenging.  I, like you am happy to care for the man I love.  2nd time marriage, I can only imagine how horrible it might have been for him if not for me.  No I'm not a martyr and believe I am where God wants me to me.

That being said, I am fearful for how long I can keep up the pace and accelerate the pace as things get worse.  Hopefully I can get some clues on Alz connected.

Long story short, I think what you did for your husband was a total act of love.  Congratulations!  And you got help when you could.  Wish me the same luck!

mnm

GothicGremlin

I don't think there's a "right way" to cope - if meditation and yoga are the "right" things, then I'm in for a big fail. 

I think we all find what works for us, and do that. For me, it's seeing my therapist, spending time with my s.o., being on this forum, and going to the gym and my goth club. My gallows sense of humor also helps me get through.

JLB43

I agree....we all have our own way to cope...I'm a former engineer, trying to convert to the understanding that there isn't always an answer. But given that, this is the process I have used for several years now:

I read continuously to understand what behaviors to expect and how others cope. This forum has been a great resource for doing that. I have kept a journal consisting of three sections: 1) behaviors that I have experienced with my LO, 2) how some caregivers have coped with those behaviors, and 3) lessons learned that I have adopted. It's a continuous learning and adaptation process. There are valleys and peaks.

I have developed a support group that includes my two daughters, my sister-in-law, our housekeeper, and a host of friends. Each offers a unique skill set that I don't have. Over time, I have learned who to ask for help and how to do it in a way that is best for our LO. Together, they give me some time for myself. I can't thank them enough. And, of course, this forum.

I am still in the process of "taking care of myself" as so many tell me I should do. I find this the most difficult aspect. It takes me baby steps, but I am slowly learning to walk.

When actions seem to work, I enjoy the moments and write them down in my journal.

I try to share these thoughts with my support group. Each is at a different place in this path of caregiving and collectively the more we can understand each other, the better path we seem to be on together.

JLB43

????

I think that is a question that really does not have any answers, or maybe the right answers. It is a struggle, and a moving target as things change. Everyone says you need your own time, but that is easier said than done at times. I have given up things that I have done my whole life and enjoy. I guess you find your own time a little bit here and there. I use to walk or hike 1 ten miles aday. It keep me healthy mentally and physically. In November my knees started bothering me. I have arthritis in both, series of shots helped the left one, but not the right one. So I see a Surgeon in a few weeks, might need a knee replacement which will add to the stress taking care of my wife. I guess we do what we can do when we can.

ghphotog

Thanks everyone! I've been doing this now for years but the last two or three have been the hardest.

My wife shadows me everywhere and when I sit down and try to rest, watch golf, read, etc she won't be quiet or leave me alone. She is the ultimate pest and I say that in love. I can't leave her alone any longer, even for short periods. I take her with me to play golf but that is difficult as the bumpy golf cart is very uncomfortable for her and she is either cold or has to pee. On the golf course, I can't just leave the hole to drive her to bathroom that may be on the back nine somewhere and expect to get back to my place. The group behind you won't understand what the hold up is and it's not fair to the people I play with.

Even now I'm at work and she is in my office with me asking me over and over "how much time do we have left?"

Right now it's daycare a few days a month but that may change as the city's Senior Affairs will pay for 3 days a week daycare since I only work a few hours a week anymore. I only have to hope my DW can get into the routine and I have my doubts.

Drapper

Ghphotog- I really thought this was an interesting question. I did learn much from the answers and it also got me thinking about how I get through the day. I actually do meditate and exercise, almost daily, and try to take a walk everyday My DH is always with me, so he does these things too. I also read the Torah (DH is Jewish) and psalms daily prayers, wisdom and guidance by Mark Lanier out loud to my husband before bed. And since I’ve joined this community I read things here

i also spend a lot time trying to talk myself out of feeling lost and angry, and trying to be positive although I want to scream. I read articles and books to try to make myself a better caretaker.

I do get 4 hours a week of respite when my DH has a companion Those 4 hours are like a lifeline. I try to see friends and I go to PT for a recent knee injury. My main joy is seeing my 6 year old grandson a few hours after school 2x a week to watch him while my daughter works. My DH often makes this difficult, as he doesn’t want yo “babysit”. I also try to stay in touch with friends via phone. Watch a movie in the evening with DH. Read the paper out loud to him on Friday’s. I’m just happy when there are days with no behavior issues. Which is rarer and rarer these days. We are all in the same boat. Trying to stay afloat

Just Bill

Imagine you are on a small boat out in the middle of the ocean for a long time. Where would you put your mind to stay sane ? Some days are calm and beautiful, other days are 30 foot seas and hurricanes. Going crazy or losing your mind isn't an option, you have to keep it together. You are a prisoner on that boat. No getting off for a long time. You make friends with the boat, the sea and the weather and you process it one minute at a time if you have to. Break it down to miniature bite size chunks of time. The worst thing to do is dwell on the negatives like the small confined space of the boat or the unpredictability of the weather and sea or how long is this boat ride and when can I get off. It is easier to have a tranquil mind in the moment than it is to let our imagination project how much the situation sucks. You could imagine a long airplane ride or long prison stay. Anywhere your mind is in an uncomfortable place doing uncomfortable things how do you keep from losing it ? First thing is to accept that this is your fate and you have very little control of outside events. You do however have control of how you process outside events and that is a constant work in process. Once your brain realizes escape is not an option it will adapt and you will find happiness in the most uncomfortable and unpleasant experiences. We still wake up every morning to a beautiful day and noticing that and appreciating just that is important for mental health. We are all survivors; Victims with attitude.

Denise1847

Just Bill, What a great description! Loved it.

ghphotog

Some great analogies!

Right now I'm having a hard time "accepting" (wait, I know that's where I'm at and have been for years with no land in sight). However, my mind wonders to a time when I finally see land even though that is thousands of mile away with many sharks and storms still to contend with and any one of those could sink me down at any moment. I've been living in the moment for so long that I need to know what the outside looks and feels like again. I think about traveling without thinking about anyone else but myself and my dog. Go where I want, stay as long as I want without anyone waiting or depending on me at home. Probably not a good thing as it's too easy to snap back to reality and that makes it all the more desperate. It's good to imagine now and then but I also have to realize that I need to get back to an "enduring" mindset and just endure moment to moment and day to day until "that" day finally arrives. I know it may sound selfish and I love my DW but I also need my own time and space so desperately. One moment passes to a minute, the minute an hour, the hour a day. Before I know it I have another year down. It's all mindset but every now and then the mindset wants to stray.

Alcohol and cannabis are the only things I look forward to in the evening but they also are not the answer and over doing it only makes things that much worse so I try to moderate. I don't want to be incapacitated if there is an emergency. I live in the moment most days. I wonder, is it wrong to imagine freedom or should I bury that idea and just stay with the business at hand?

A long time ago I was involved with Amway and one of the concepts that was stressed was to drive around to the most expensive neighborhoods in town and imaging buying that house and what it would take to do it.

Didn't work for me as I'm not a good salesman so I didn't make it very far with that but maybe the concept of imagining where you "want" to be will ultimately lead to your destination. IDK anymore.

Drapper

I know what you mean about dreaming of being alone with no one else to worry about. I have the same dream. I also fall into the “enduring” attitude but find that takes me to a bad place. I did like Just Bills last sentence, which is really about gratitude in everyday life .. waking up to a beautiful day and noticing it. The days I can do that, I do tend to be more at peace.

victims with attitude …. I love that.

ImMaggieMae

I agree with Just Bill’s comment that once your brain realizes that escape is not an option it will adapt. I don’t know if I find happiness in the most uncomfortable and unpleasant experiences, but I try to find ways to make my husband’s life easier and more comfortable. He didn’t ask for any of this. While it’s devastating for me to watch him disappear little by little, it hard to imagine how horrible it must feel for him. Victims with attitude indeed!

Bill1997

Read Just Bills note about being on a boat.

Probably one of the most insightful commentaries on the where we are as caregivers.

cavenson

This discussion site is a lifeline for caregivers. Thanks to all of you for sharing your experiences with coping--so insightful and so helpful. As others have pointed out, you have to find what works for you--often by trial and error. I find solace in the usual things--walking a couple of miles every day on the treadmill while I enjoy the Music Choice channel on TV--mostly music from the 70s for me; meditation--I recommend https://www.youtube.com/user/TheHonestGuys/videos ; reading; staying in touch with friends and family; beginning a journal--a recent addition; looking for things to be grateful for; and visiting this AlzConnected website.

Alzheimer's is often referred to as a journey. As the caregiver for my DH, there's a lot of baggage to carry--sometimes more than I feel I can handle. The road has many detours, and I'm still learning how to approach them. It goes against my sense of direction, but I must avoid arguing, correcting, and reasoning. I've finally accepted this reality after reading many comments on this site. So, I'm consciously avoiding these behaviors, and life is much more peaceful for both of us--at least for now.