How do we? I?

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Mrs C

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Jun 30, 2011
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116
Reason
CALS
Country
US
State
MN
City
Rochester
We have totally pulled together as a family to help my hubby, their brother and father, to learn to tube feed and take care of all of his needs. NOW he tells me he only feels safe with me. I have trained very thoroughly back up, as I feel I need time away...why then did I cancel my plans of two weeks?! Because it was 3 hours away...and God forbid anything happen while I was 3 hours away......how do I enjoy my time
away, when he doesn't get time away from his disease? What are the rules of disengagement in this situation? How do I ?
 
Since my husband's onset last summer, I have not traveled more than 30 minutes away without him. He has nurses with him most every day but there are many times that even they do not understand his wishes. I can't imagine leaving and not being able to get to him if something happened. My PALS gets no respite from this disease. I guess I figure that I will have more time for myself than I ever wanted in the end so I try not to think about getting away. He inspires me so much with how he has handled this disease. He takes it like a trooper. Although it takes about 2 hours of prep work, we try to get him out at least every other week as we worry that his mindset will become depressed looking at these same four walls of the bedroom all the time. When I am feeling down, the forum usually has a way of using someone else in my situation who understands to pick me back up. Maybe if there is a support group in your area, that could be some time away. You do sometimes have to take a little time for yourself.
 
My husband didn't really feel safe with anyone but me, either. After a year of 24/7 caregiving, I hired and old high school friend to come in three days a week for four hour stretches so that I could get out of the house. Once every three weeks I would venture about 25 minutes away to the base for supplies. Most of the time I was no more than 10-15 minutes away. About once a week, I loaded my husband up and took him to the neighborhood pub to meet his friends. I learned to appreciate the time away so that I could appreciate all of the time together. I'm not going to say it was easy, it wasn't. However, I would give anything not to have so much free time now.
 
mrs c....carers have the hardest time of it.....take yr break , u deserve it and need it...comeback somwhat refreshed......u most of all have to look after yourself so that u can do the looking after to ur best ability....u cannot get ill........and no guilt...god bless, johnno...ps...thats the rules
 
Mrs C
I cannot stress enough. You need time for you in order to take care of him. Yes I understand how your husband feels. I am the same way with my husband. I want him with me all the time. But that is not pratical or in any way good for his health and sanity. I know cals get frustrated. You love us and would raise heaven and earth to heal us. The frustration in that alone will weigh on your health And peace of mind I love my husband more than anything which is why he needs to get away from me . To rest and renew. Every day with this diease is more confusing then the day before. You are hurting as well him. Please. Show him this post. Then take your trip . The care his father. And brother will give him will be just fine. They love you guys and want to help. Let them. Sending my love and prayers
Felica
 
Mrs C... everyone before me has already said it. You can because you MUST. If you burn out (which is possible) then who will take care of both of you? The disease is not your fault, and feeling guilty at taking time for yourself will only add to your stress level. You don't need to go far but you do need to go. See a movie, get a facial or a pedicure...something that will help you relax. Will he understand? Maybe. Maybe not. Doesn't really matter. You MUST take care of yourself in order to be the best caregiver possible.
 
Left and got my nails done yesterday, He has always likes it when I do. We are battling mucus in the throat and saliva in the mouth. Very scarey for him, so I stayed home today. I let both daughters off the hook for the day, as he did not even want company. He seems a bit more chipper this evening. I am happy I stayed home tho, as I suctioned his throat a lot. Thanks to you al tho, I am reaffirmed.
 
We have totally pulled together as a family to help my hubby, their brother and father, to learn to tube feed and take care of all of his needs. NOW he tells me he only feels safe with me. I have trained very thoroughly back up, as I feel I need time away...why then did I cancel my plans of two weeks?! Because it was 3 hours away...and God forbid anything happen while I was 3 hours away......how do I enjoy my time
away, when he doesn't get time away from his disease? What are the rules of disengagement in this situation? How do I ?

I also taught the entire family how to take care of my mother and she still wouldn't feel secure unless I was caring for her, even over my father who initially taught me how to perform tube feeding and medicating. In the last 6 months I have not been gone for more than 15 to 30 minutes from my mother except in the evenings when my father got home and before he got home I would have to prepare all of her medications and feed her so that all he had to do was administer her nightly medications and put her to bed. I never had a break of more than an hour or two (except for sleeping). I understand how you feel, I went through it too and all I can say is to enjoy the little moments in between. I bought a Nintnedo 3DS to play while I was sitting with my mother, or I read a book, just little things but they helped. I never did this myself but you can try: have another family member who knows how to do everything come over for a few days and work with you doing the things that you usually do (under your supervision of course) and eventually (hopefully) a bond of trust can be made so that you can take a break and have someone else take over for a time. I never did this myself due to the fact that my father works 60 hours a week and everyone else live either out of state or more than 4 hours away and the grandkids while old enough to watch my mother while I ran to the market, weren't old enough to handle all the care my mother needed. I sincerely hope this suggestion works for you if you give it a try.
 
Ive found that if some time isnt taken, often times resentment towards the PALS starts to happen... along with what everyone else is saying. Hope you find a balance.
 
As the flight attendants say, "Put your own oxygen mask on first."
 
Ms C. It will be too easy for him to manipulate the situations because he can guilt you into being his only caregiver. You are very smart to have trained others who are willing to help. I am sure that he does feel that you provide the best and most reliable care, but he can't always depend on you to be there. Explain to him that you need to have back-up help so there will be someone to care for him if you are ill or have an emergency that prevents you from being there. Start with shorter times like you are doing and then build up the time gradually. He will be more comfortable with them if he finds that they can also meet his needs. As more time passes, it is so easy to start to begrudge the fact that you have to do everything. He isn't the only person struggling with this battle. You are too. I have to tell you a funny story that happened with my husband. I had arranged for our son to take care of him so that I could possibly get away for a few days. My son was all set to stay and my husband called him to make sure he knew that our son would have to wipe his bottom if he had a bowel movement. I think he was hoping my son would change his mind. He didn't, but my husband got sicker and I didn't get to go anyway.
You must take care of yourself also. And don't feel guilty! My husband passed away in August - just a little over 2 years from his diagnosis.
Janis
 
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