This has been a tough week...we're both going through major adjustment to the substitute aide and his ability to manage dh's needs.
I feel like dh is sucking every ounce of life from me this past week-he drinks any beverage I may have near me, eats the food on my plate (even after he's eaten a substantial meal), races me to the bathroom (he will always win), even when it's urgent I get there, needs constant supervision and direction and is no longer able to process simple commands. I feel like I've lost any sense of "me" and that all the energy in the house is being sucked up by dh. I am having difficulty dealing with this recent decline where everything is "no" and he is so self-centered. He's a 2 yo in a 5'11", 205lb body.
I know I shouldn't complain because so many here are dealing with more serious issues, so I apologize for whining. Thanks for listening. I guess I need to put on my big girl panties.
I honestly believe that it's the time when we're living with the draining, never-ending aspects of caregiving--those stretches where our identity and independent movement is sacrificed--that IS a most difficult "issue" in caregiving.
The thing about crises moments is, you hit a point where you MUST act. You must get help, you must do something. And this, in a way, is actually helpful because there's a ball that must be rolled forward. I'm not suggesting that crises are in any way pleasant, but being forced into action can actually shake off some of the awfulness of the doldrums.
First of all, do not apologize for expressing your feelings. It is not complaining. It is why I started this website - so spouses could vent, discuss, gain and give support.
Your choice of words is interesting to me - that he is sucking every ounce of life from you. My sister used that same anaolgy in her most recent admonition to me that I had better consider placement soon.
You mentioned an aide. I don't know how often the aide comes to help or the duration of his/her stay, but it sounds like you need more respite for you. Maybe you could increase the aide's time, so you can remove yourself from the stress for regular periods of time.
Honestly, if Sid didn't go to Day Care 3 days a week, I would not be able to cope at all. Even though he doesn't mean to do it, and even though he can't help it, he is like taking care of a baby. He can't/won't get up to get or do anything except go to the bathroom. He can't figure out how to do anything without taking a monumental amount of time, and even then can't figure it out. He needs everything explained to him over and over and over again. He remembers nothing. So yeah, I would agree with your characterization - He's sucking the life out of me.
LFL really like Joan says, do not apologize. You are in a tough spot too, just like everyone in this club.
When I read your words, it makes me think of the lady Neurolgist, who tells me along with the VA nurse, to just hang on it will get "better" when he gets to the bed bound stage. This was a few months ago, oh better all right. He falls down and smashes himself almost every day, cries, breaks my heart, plus of course all the care that you mentioned.
I wish I could be there and let you eat half my dessert, and I will let you go for a nice peaceful walk while I watch your mate. ((((LFL))))
Thanks to all of you. Yes, I need more time away from dh, I know that, but because of my own disabilities I cannot go out without help, and sadly there's no one around to help. Joan, I feel so selfish-right now we have a 24/7 aide but because he is a substitute he does not know how to handle dh and is afraid to take him outside for walks because dh runs away from him. So it means long blocks of time with dh. Here I am complaining and I have ft help and not all the issues you have with Sid and your father. I guess my tolerance level is down.
Thanks to you Joan for this wonderful site and to all of the wonderful, caring and Compassionate people here. I truly could not have made it this far on the journey without you.
LFL i think the analogy for the vampire sucking the life out of us is a very good one. day in day out, it weighs on us eventually for sure. so sorry to hear your caregiver is having issues walking and bonding with DH. it may happen in time.
it gave me a smile to remember how DH would race to occupy the bathroom when we saw me heading into it as well. they are self absorbing arent they? its ok to complain regardless of the issues if they have you in a tizzy. venting is very special to the one doing it! :) and it helps alot to put it on paper. hope you get some respite when you can. divvi
Coco....you might want to ask the Lady neuro and the VA nurse when they tell you it will get easier when he is bedbound....ask them if they are going to be able to provide you daily help to change the bed, bath him, change his clothes and diapers with him still in the bed. Physically, I knew I couldn't do that and was about to place Jim when he got much worse. Thankfully, more help was provided and that is the only way I could have kept him home like I did. There was no way I had the physical strength to do that....also, take meals to him if he is still eating. These medical people are really trying to help you, but saying it and doing it on an daily and hourly basis is somthing else.
I know your problem is very different then most of us because of your location. Hugs and thinking about you every day.
The isolation has not proved to be too much of a hindrance. The nurses make monthly visits, and there IS a small local hospital with an ambulance service. Thank you I will tell more on another thread.
When I first saw the title of your post I remembered that you had written about some night time difficulties. I think you are wonderful.
I also remember your posts about the different aides and the different challenges with them. State law here requires that an aide has their own bedroom and bathroom which eliminated me (us).
I hear you. Trying to contain a 6'2" about 200 pound man when he "had a plan" to leave, return to work, drive somewhere, etc was frightening to say the least.
BTW. A couple of weeks ago I responded to what I was given as your email and just wanted to let you know that I have added my email to my profile in case you want to get in touch....