What do you do just for YOU?

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Danijela

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Dec 3, 2008
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663
Reason
PALS
Diagnosis
11/2008
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UK
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UK
City
Bolton
Hello all caregivers. As my parnter's illness progresses and his needs increase I am finding that I am doing less and less (if anything at all) that is just for me. Some of this is due to practical arrangements (or the lack of support at times) and the rest is plain and simple guilt and not actually gaining any pleasure in having time away from my partner that is just ME time.

I do want to change this. What do you do that is just for YOU?

Dani
 

Gentleman Jim

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205
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Indiana
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Fort Wayne
Dani, Good for you. If you don't do something other than think, talk about ALS, then that is what rules
your life. What a dreaded life. You end up with nothing to share, nothing to excite either yourself or
your pal.

One of the worst questions someone can ask Eddie when they come to visit; "How you doing?"
Since Eddie doesn't speak, I speak for him. I change the subject and ask them about what is going
on in their lives. He wants to know. We talk about what is going on in the community, the state and
the world.

When they are not there, we are busy enough taking care of needs, but, that is automatic. That is
just what we do. Anything to get our minds off of the reality of his weakness, and get our minds
on what is going right in the lives of his son and friends.

O course we talk about experience's we have had, but they don't captivate the conversation.
People really don't want to know. It is very hard as you all know dealing with this disease.

Eddie has accepted the Lord, I know that, not everyone subscribes to that notion, but, Eddie
knows he is in bad shape. Not Everyone who comes to see him, knows they are dieing.
So, you see, from his perspective, they are in worse shape than he is.

I said that so we can all see that the reality of each one of us is terminal. Eddie doesn't want
simpathy, he wants friendship, we laugh and joke pretty much like we did before he got ALS.

We do laugh and cry together, we pray and witness together, but by and large, since he does'
not get out of his bed, we bring the world to him, other than fox news. :)

Eddie has ALS, if we are not careful, we will have it too. Eddie doesn't want that.

Thanks Dani for being transparent...
 

joni51

Senior member
Joined
Sep 8, 2010
Messages
985
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Lost a loved one
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10/2010
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US
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Al
City
Valley
Good question Dani, I seem to be in a rut too! Tonight I made plans to go eat with several old friends..even if it is just for an hour or so. How is that precious little boy?
 

grandmommyk

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Joined
Jan 30, 2011
Messages
120
Reason
CALS
Diagnosis
07/1995
Country
US
State
TX
City
Spring
I love to garden. I have to actually plan time to be able to do this, and even then it doesn't always work out. My husband spends his time in his PWC in front of his computer or watching TV. He gets a lot of liquid in his feeding tube, and it seems that I always have to be available to grab the urinal. I know this sounds crazy, but my plan is that each time after he uses the urinal, I will do something that needs to be done away from him, clean the pool, get on my inversion table, move the water hose as I water the yard, clean a little upstairs or something for me - take a short nap, a hot bubble bath, or garden a little, etc. It doesn't always work. Sometime he needs other things or I am in the middle of something I need to finish. Sometimes I have too many of the must do things that I don't get to do any of the things for me but every now and then I do.

I have made changes. I know that vegetable gardening is out. I don't always have time to go out and harvest, fertilize, weed etc. I do flowers. Sometimes I lose some from neglect, but there are always some very hardy ones that live despite the abuse. When I see one of those blooming, it brings me joy. There is a plant exchange here twice a year. I put down my foot on that one and insist that I will go. Again sometimes I can't but I plan to. Each time I get lots of new and interesting plants for free. That helps with the cost, and helps replace what I lose.

I used to love to read. I made a decision this year to read one book a month just for me. I finished the first and started the second. That's as far as I got. Last month, my daughter brought me a book. She had bought 2. She said I want you to find time to read it at the same time I do, so we can talk about it and share it. She said she would go slow so I could keep up. We finished it last night. She is now looking for another she thinks I won;t be able to just quit somewhere along the way. I also check fb daily, so I can still feel connected to others and the world outside my own. Sometimes I just play a game of freecell or spider solitaire on the computer. I probably do this 1 - 3 times a day.

My biggest problems in doing things for just me is disappointment when it seems we go several days, and I can't do anything for me or I finally think I can but get constant interruptions. The other one is guilt. I always have so many things that I should be getting done. My house cleaning is far from what I want it to be. There are always piles of laundry, papers, phone calls, etc I need to make and on and on. That pulls me down, but all I can do is keep trying, and like Gentleman Jim, I pray alot.
 

Pandora

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Joined
Apr 30, 2011
Messages
130
Reason
Lost a loved one
Diagnosis
01/2011
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US
State
Texas
City
Crowley
I must admit, I do almost nothing for myself. There is no time, and very little money. No one wants to come and sit with my pal anymore, so I could. I used to go for coffee, but that is no more. It's not a matter of guilt for me, It's a matter of one, my Pal does not want anyone else and refuses to be alone with any one but me, two with all the money that goes out due to the illness, there is nothing left. I am not saying this to make you afraid of what is to come, just shareing my reality. It is a deep dark hole we are in at this moment in our life, and the light at the end of the tunnel is bitter sweet.
 

KKay

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Joined
Sep 12, 2008
Messages
102
Reason
Loved one DX
Diagnosis
01/2008
Country
US
State
Northeast
City
Jersey
When you think of something you would really like to do write it on a "wish list" and then when the opportunity presents itself look at your list and pick one. Then to make yourself do it and not feel GUILT, tell yourself that accomplishing this wish for yourself will be good for everyone (for so many reasons).
 

Iloveocean

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Messages
86
Reason
Friend was DX
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US
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Indiana
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The East
I never used to be into self care. Now that my husband has passed away that's all I do. Take care of myself and the dogs. One of my favorite things is a paraffin bath. For me it's an absolute luxury. It makes me SOOO relaxed and at peace with myself. It was worth every penny. I have been thinking of you lately and wondering how you guys are doing. It's so good hearing from you! Sending lots of love...
 

Barbie

Extremely helpful member
Joined
Dec 29, 2007
Messages
2,659
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Lost a loved one
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01/2007
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US
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FL
City
orlando
Dani,
What a tough question! I am like you--doing this for a long time and it is almost impossible to really have anything for yourself. Everyone always talks about caregiver burnout--but dang--what can you do when you are the only caregiver for someone who requires constant care? You can't just ignore them!

last year I worked really hard at have a weekly girl's nite out. ..that lasted for about 3 months. It was SO MUCH WORK! I was calling everyone I knew and calling in every favor. I finally decided the work was not worth the fun. A more realistic goal would be a monthly nite out I think.
 

Danijela

Senior member
Joined
Dec 3, 2008
Messages
663
Reason
PALS
Diagnosis
11/2008
Country
UK
State
UK
City
Bolton
Hi All, good to hear some of your thoughts and ideas (gardening, books, friends...). I think an added complication in my case is a small child (thanks Joni for asking after him, he is a lively toddler now), so splitting my time between my son, my parnter and my full time job leaves NO TIME for me.

I know I am lucky that my parnter is supportive and does not mind having others to help with his needs. Recently, a relative came to help, but I could see they would rather be anywhere else than with L. That was it for me, my plans of having some ME time were destroyed, but I did try.

One of my biggest worries is that I will become bitter and resentful, because I do not feel there is any space for me. And doing everything with my partner requires so much preparation and planning (imagine trying to organise an outing with a 2 year old and a PAL...). So far I maintained that we ought to do everything as a family, but I think I will have to dedicate some time just to myself...if only I coul get rid of the guilt I feel.

Dani
 

10steps

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Joined
Jan 1, 2011
Messages
137
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Lost a loved one
Diagnosis
04/2010
Country
US
State
MA
City
western
I run. Distance depends on time available. Running is also essentially free except for the shoes. Its great and I can do it just about anywhere. I love trail running when I can.
When it's decent sometimes I kayak. Winter I ski. I used to feel guilty because someof these activities we enjoyed together.
I love driving with the windows down, sunroof open, and music cranked. I really miss the jeep...that was the best with the top off and the doors off. Had to sell it off though. sigh.
I'm a better person though when I'm able to get out.
 

Danijela

Senior member
Joined
Dec 3, 2008
Messages
663
Reason
PALS
Diagnosis
11/2008
Country
UK
State
UK
City
Bolton
I used to run with my parnter. Then he started experiencing MND symptoms...after that I never managed to get back into running. I love hill walking. It is so grounding and as I live in the North of England (long, monotonous winters) being out and about allows one to see subtle changes in seasons. I tried taking my son up on the moors, but he is still too small and kept reaching out to be carried. Perhaps I ought to join a walking group.

D
 

Tom's Support

Distinguished member
Joined
Mar 1, 2010
Messages
199
Reason
CALS
Diagnosis
08/2000
Country
CA
State
ON
City
Leaskdale
I go to yoga. Nothing too stressful, good stretching and good body-mind connection.
Just learning how to breathe into different parts of the body is amazing.
Side benefit, I now have a pretty good set of abs!
Tom tries to get into my yoga time slot by demanding that things need to get done, (nothing, of course, that couldn't wait for me to do later) but I have become quite guarded about that hour of the week and the family knows better than to take it away from me. Tom is a hard case, but I still get to go so I WIN!
 

Gentleman Jim

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Joined
Dec 28, 2010
Messages
205
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US
State
Indiana
City
Fort Wayne
I get a lot of exersize running up credit card bills. Jumping to conclusions, sitting up to listen,
jogging my memory. All that activity is like sitting in a rocking chair. Moving and not getting
anywhere. :)

Barbie and the rest, I so appreciate the stress that you endure. I have 5 women that help me.
That comes to over 8k a month, just for the payroll. They do a wonderful job.
In that regard, I am blessed. All I have to do is be funny and keep attitudes in balance.
That is harder than it sounds.

Last month I rode Eddie's PWC everyday just to get the batteries low enough to charge properly.
Pour me, pour me, pour me another one bartender. :) Seriously, I do those things and much more
that is helping Eddie. I used to do all that by myself, but, for now I do have a group helping, and for
that, I give thanks. For those of you who are now and always will be the only one, God help you
to keep some sort of balance in your relationship, finances, and emotions.
 

grandmommyk

Distinguished member
Joined
Jan 30, 2011
Messages
120
Reason
CALS
Diagnosis
07/1995
Country
US
State
TX
City
Spring
It bothers me that several CALs don"t appear to be doing anything for themselves because they can't get away. I am also my husband's only caregiver. I am sure he has more function and needs less care than some of the PALs and probably needs more than others. He can't talk, has a feeding tube, is dependent on his power wheelchair, and has to be transferred by lift. He does still have some use of his hands and can use his computer with a special mouse. The computer and tv are pretty much his only activities. We do go to Church. He doesn't like for me to do anything without him other than take our grand daughter to catch the bus and pick her up on the days her mom works. I was trying to go to garage sales for an hour and a half on Saturday mornings. Now he goes with me if I go. We go to Walmart for groceries once or twice a month. Our daughter does all the rest of our shopping. If I do go somewhere without him, say to a doctor's appointment, he is not happy when I get back and lets me know it.

The thing is we all need something for ourselves, even if we have no time. Even if it is burning a candle that you really like, reading while you sit with your Pals, drinking your favorite beverage, etc. there are things you can do just for you even at home. It isn't time away which we all need, but it is still something for you. Please make sure you do a few small things and savor them, reminding yourself that those things are just for you. It really does help.
 

Gentleman Jim

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Messages
205
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Indiana
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Fort Wayne
Dr. Phil, Don't touch that dial. He is pretty good at giving advice, I believe. Especially in general.
In general we teach people how to treat us. Most, not all, parents teach there children to run over
them.

If you stand for nothing you will fall for anything. Old saying, but true. Stand up for yourself, if you
don't, you will be a door mat. Having said that, Unless you are able to leap tall buildings in a single
bound, don't start the run every time you pal beaps. Know the difference between emergency and
please help me.

If you are having a conversation with someone else, finish it. If you are eating your breakfast, lunch or
supper, finish it. I am telling you, Eddie used to beep everytime we sat to eat our lunch. Bedpan. Right.
After just a few times of this, I would go to him before we sat down and ask if he needed the bedpan?

If he said no, I said don't expect us to stop eating and come put you on it or off it in the middle of our meal.
I meant it. Know the difference between emergency and please help me.

I am not the smartest person in the world, however, I and my wife have raised four sons, I have 7 Grand-
children. My wife is amazed at how the grand kids mind when I am around. Know the difference between
mean and mean it. :)

My five year old grand son would sometimes scream if he didn't get his way or if grand ma didn't move when
he wanted something. And it did aggravate her, but she was being nice, nice. Right.

One day he did that, I got up out of my chair walked over and in the middle of October, reached out and took
him by the arm, escorted him to the front door. Opened it and helped him outside. Closed the door, didn't say
a word. A minute or so later, he is knocking on the door. I got up and went and opened the door. He looks at
me, I said are you done. He knodded yes and I swear he has never done it in front of me again..

Please don't misunderstand me, I don't want anyone to feel sorry for me. Let others know where they stand,
and when they are out of bounds. You will be amazed at the difference. :)

Gentleman Jim,
 
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