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time away vs. getting away from pwp


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#1 confused caregiver

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Posted 09 September 2011 - 12:24 PM

My spouse (in her mid 50's) has been diagnosed with parkinson's for about 4 years now. Things aren't so bad yet, but they are getting worse. I do a lot for her, however, I usually reach a point where I feel like I'm going to explode inside. I have found that time away from her helps me to recharge my battries, make me happier, and make me be able to handle everything better. However, she has a problem when I want to be by myself and do things without her. She feels that I am trying to get away from her and she is hurt. I guess I am trying to get away from her. But it's usually only for an hour or two. So she is hurt, says things to me, then I get angry cause she is blind to my needs. I love her, but right now, I don't like her. Being around her makes me depressed and angry. I am reaching a point where I need to talk to someone. I wish someone would set her straight on this issue. I have no one to talk to, so I'm just letting it out here. Any thoughts would be appreciated. Thanks.

#2 CynthiaM

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Posted 09 September 2011 - 07:35 PM

My spouse (in her mid 50's) has been diagnosed with parkinson's for about 4 years now. Things aren't so bad yet, but they are getting worse. I do a lot for her, however, I usually reach a point where I feel like I'm going to explode inside. I have found that time away from her helps me to recharge my battries, make me happier, and make me be able to handle everything better. However, she has a problem when I want to be by myself and do things without her. She feels that I am trying to get away from her and she is hurt. I guess I am trying to get away from her. But it's usually only for an hour or two. So she is hurt, says things to me, then I get angry cause she is blind to my needs. I love her, but right now, I don't like her. Being around her makes me depressed and angry. I am reaching a point where I need to talk to someone. I wish someone would set her straight on this issue. I have no one to talk to, so I'm just letting it out here. Any thoughts would be appreciated. Thanks.


I'm a wife and a PWP. I wonder if maybe she is afraid that you could drift away from her. Could it be what you are doing when you are off on your own that worries her? You certainly do need an opportunity to recharge your batteries. I've been a caregiver and do understand how you feel. Maybe you just need to reassure her that you will always come back home to her. Is there a support group for caregivers? It sounds like maybe the two of you just need to really sit and talk, try to understand where the other is coming from. No placing blame on one another for their needs. When you do leave for a few hours is there someone else that can stay with her? Even if she doesn't need full time care, maybe she just needs to not feel alone? PWP can have high levels of anxiety. Is that an issue for her? I usually have terrible anxiety when I am home alone. Just throwing a few ideas out there for you. Hope things work out for the two of you.
Life isn't about waiting for the storm to pass......It's about learning to dance in the rain.

#3 PWP'sDaughter

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Posted 09 September 2011 - 08:42 PM

Hi Confused,

My dad has PD and I've seen my mom (his primary caretaker) give up more and more of herself to the care of my dad over the years. It wears on her, and it hurts me to see it. But she does find ways to be by herself (even if it is just "escaping" with a good book in another part of the house or in the garden outside.) Did you spend time apart even before she got diagnosed with PD? Is there a hobby or something that would make it easier for her to understand your time away? Maybe if you were going to hit a bucket of balls it would go over better than just going out to get away from her... I like the suggestion from Cynthia that maybe someone else could stay with her. My brother and I do that occasionaly for my mom (when she lets us.) If that is not feasible, maybe you could rent her favorite movie, pop her some popcorn and tell her you will be back before the movie is over.

Hang in there, you are doing the right thing to try and recharge.

D.

#4 shakti

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Posted 09 September 2011 - 10:26 PM

in any relationship, people need time to themselves. i know that if i feel especially needy, it doesn't do me any good for my husband to give into that part of me. i need that time alone, to feel my own strength, and not to always lean on him. then we both appreciate each other, more.. when we get back together. i find that this is very important. dependency leads to resentments, big time. its also important to have friends to talk to , besides our mates. its difficult if one is bed ridden, or can't get around on one's own too well,but there is the phone, and books to read, movies to watch, puzzles to do, or even an afternoon nap. ..and certainly, like now, there is the forum.

#5 PinkBunnyNoBatteries

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Posted 11 September 2011 - 01:08 PM

I am usually a very positive person and grateful for all my blessings. I tell myself I am a very lucky person because even if I am in a bad situation been a caregiver, it could had been worse, my husband caring for me! Or I could be caring for one of my children, or or, or, there are always other worse possibilities that could have happened and did not, so I feel lucky and thankful.

Dreams and goals have kept me going all my life. As a single mother, i dreamed of the time my chance would come to paint, travel, go to museums, have friends who talked about what I loved, art, opera, humanities. My chance... my world of my own, always taking new classes... that has always been my carrot. I re-married 10 years ago, went back to art school for a MFA in classical painting, worked teaching art and taking people to the Metropolitan Museum to lecture them on Flemish painting. My painting techinic improved and was offered my first solo show, just to cancel it three times because I could not finish the pieces. My husband's health had deteriorated drastically and could never finish them. My dream life started to fade away.

Sometimes, like now, I just want to get so sick so I can be hospitalized for many weeks with no food but only IV so I can sleep and sleep and sleep without anybody calling me for anything nor bother me for food. I am so tired, my back hurts, my shoulders hurt, a bone in my had is swollen. I am only 112 pound, he is is maybe 170. I have to lift him all the time from the toilet, from the wheel chair, from the floor, constantly, pull up and down his depends. I take him to therapy twice a week and force him at home to do some more, maybe 10 minutes in real time but takes more than an hour of sour resistance. He has always been the king of the couch potatoes.

To lift him from the floor when he falls, I use a hospital sheet as a strap. I pass it either under his arm pit, neck, belly, groin, chest to lift that part of the body until I finally have him on his knees and torso on the seat of a chair or bed. Sometimes it feels like lifting a sea lion. It is horrible. He has a fracture shoulder this weekend, the previous a toe, today he fell, yesterday he fell, the day before I pinned him against the wall on time to avoid the fall. Must of his falls are because he is stubborn and impatient. If I am not there when he wants he gets up and walks or when he gets bored at night, he manages to get out of bed and lower the rails.

If something bothers him, out it goes, like the external urinary catheter, bandages, splint. Later he regrets, apologize and promise he will not do it again...I know, until next time.

I know it will get worse, so I do not like to complain because it is not yet that bad, whatever that will be. But I am running out of energy. I find myself crying and angry at my impotence and his stubbornness.

I am just wondering if this irrational behavior is because he is used to immediate gratification, or because as his brain is fading so his ability to understand danger. I guess I know the answer, and I am in denial.

#6 Louise

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Posted 13 September 2011 - 12:40 PM

WOW!!! As a caregiver of my husband with PD sounds like we all need to connect more.
1st- it is important to have some time away from our spouse. Maybe a friend could come sit with them for an hour or two while you get out of the house- go to the store, the library, a friends house, etc. Sometimes they are afraid of being by themselves- depending upon the severity of the PD and their cognitive function. I know that is the case with my husband. He is not able to handle his own medicines, gets confused and is frozen alot.
You both need to be around other people. Can you both get out together some time during the week- where you can interact with others- such as to church on a Sunday. Have people over to your house- that are your friends. My friends are use to seeing my husband slumped down sleeping on the recliner- sometimes he can interact - but that doesn't matter. At least they know what is going on in our home- and are more willing and able to help out for a short time. It is alot easier for me to have someone over to our house- than to try to get my husband over to someone elses house.

#7 care4loved12

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Posted 10 November 2011 - 04:13 PM

Confused caregiver, WOW you hit the nail on the head when you said..........."i do love her but right now I do not like her" my DH has PD and I feel I need to just run away sometimes. The cognative issues are so so hard to deal with. I try to get away, but reality keeps hitting when i have to come back. I have so much guilt of wanting to be away. He sometimes seems like he is controlling, not wanting me to go anywhere. I dont know if he feels I am running away from him at times. But I do need a huge break. Sometimes I feel a perminant one would be best. then the guilt of leaving him just eats away at me. I cant deal with all the issues anymore I just am ready to crumble. What is more important my health or me taking care of someone I love????????? There are NO answers sometimes with this disease.

Prayers are with you

#8 thewifeoftheshaker

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Posted 28 December 2011 - 09:47 PM

You are not alone in your feelings. Thankfully my DH can still help with the house and our kids MOST days. But still someway his "bad" days are inevitably on the days when I had a horrible day at work and I have to cook, clean, bath and feed the children while he can get some rest. However horrible it sounds inside I'm so frustrated with the situation. I know if he could choose he wouldn't have PD. And though our marriage vows say in sickness and in health, who really thinks sickness is going to happen?

#9 NorthernRose

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Posted 29 December 2011 - 11:46 PM

My spouse (in her mid 50's) has been diagnosed with parkinson's for about 4 years now. Things aren't so bad yet, but they are getting worse. I do a lot for her, however, I usually reach a point where I feel like I'm going to explode inside. I have found that time away from her helps me to recharge my battries, make me happier, and make me be able to handle everything better. However, she has a problem when I want to be by myself and do things without her. She feels that I am trying to get away from her and she is hurt. I guess I am trying to get away from her. But it's usually only for an hour or two. So she is hurt, says things to me, then I get angry cause she is blind to my needs. I love her, but right now, I don't like her. Being around her makes me depressed and angry. I am reaching a point where I need to talk to someone. I wish someone would set her straight on this issue. I have no one to talk to, so I'm just letting it out here. Any thoughts would be appreciated. Thanks.


Hello confused caregiver.

While you may sometimes try to get a breather... you might want to reread what you've just written and find your own answers to your questions:

"I love her but I don't like her"...

Your own admission of love is definitely stronger and more steadfast than liking her. You are a wonderful soul. :)

#10 tedybrs

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Posted 11 January 2012 - 07:52 AM

Dear Confused Caregiver,
I know exactly how you are feeling. You are NOT alone! Always remember you are not complaining, you are reporting. I have found a therapist to talk with, and that has really helped. We as caregivers are enabling our loved ones by always doing for them and not thinking about ourselves. If you have siblings, cousins, older children, friends, neighbors, or hire someone to stay with your loved one. You need to take a break to recharge yourself. It took a bad infection for me to be put into the hospital and I felt I was on vacation. Now I treat myself to a weekend away every 6 weeks, so that I can stay strong and be more helpful. Let's stay in touch. :rolleyes:




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