Susan M

I just read Sue's blog from today. Yearning for what is gone - you have to read it. I have quietly been reading Sue's blogs and leaning on her words more than she knows. Sue you really nailed this one. This blog is your good deed for today - actually for me it is a month's worth. I am printing it - several copies Asha- I just don't get you yet. I should be supporting you and you are carrying me with the simple gesture of asking if I am ok and knowing that I am not. That simple gesture - reaching out. Asking such a simple question. Another good deed. I just need to lick my wounds a bit more Asha.

Sue, this is where I am at. You just nailed it for me. I don't know how to get out of it either. It has caused me to stay away from this board and not join the caregiver chat again. My head of steam is enormous. I know what you mean about Asha - she seems to come to my rescue and I just don't get it cause I should be coming to hers. I am so glad I found your post (thru Asha) but I still don't know how to get out of this funk. But at least I can explain it through you. I wish I could barge over and pull some weeds with you and cry a little and laugh some too and just get ourselves together. I thank you for your experience and insight.

There has got to be some kind of perk to this caregiver role. I think God or whomever is in charge out there should have pity - if you won't get rid of stroke then at least keep us caregivers healthy, and give us patience, and understanding and strength and the power to heal and I could use a raise right about now too. Is this asking too much? And one more thing if you are listening because I am talking to you and I am told you do NOT need to be in a church for you to hear me(how anyone came up with proof of that either way I will never understand) - could you let Jackie talk again - and how about use of the leg and arm - and perhaps let's get rid of the peg tube and hey one more thing - that stenosis in her back - you could get rid of that too? I went 6 months without getting sick. I am sick. I don't do sick well. I don't know who does. But I have learned that I especially don't do it well alone. And I don't like doing it alone. It also makes me more vulnerable to people and their words. I took great offense to one of jackie's sister's words this weekend. I am told she has a heart of gold and somehow I want to believe that but she spews words of steel and does not seem to know when to stop. I tend to be short tempered and add not feeling well and it pushed me to the edge. Perhaps it's not important what she said as it is how it made me feel - from what I have read on the site many of us caregivers get a bit sensitive when we think we are being questioned about what we are doing and why. Like stepping into a snake pit and she stepped right into it with me. I felt my choice of her SNS was in question, her rash, her meals, her wait time - shall I go on? NO? Oh but I will - what pushed me to go put my head in a snowbank (I am not kidding) was the comment about being sorry that Jackie was such a burden to me. And it was not said with love and concern. It was mean and uncalled for. SO why did that push me? Because stroke is a burden - not one that any of us has asked for. And I feel guilty that I feel it is a burden and it has turned OUR lives upside down. Not yours dear sister-in-law - your vacations and family functions and lunches and movies and dinners and golfing and whatever the hell else you have in your life goes on. You just fit her in around that. You waltz in and out. You step out of this stroke hell and back into your safe and known home where someone waits for you with open arms. You don't do stroke every day. Jackie does. In my way I do. But you do NOT and you have no right to question what I do - I do what I do because I love your sister more than anything. My biggest guilt is that she is not with me. I still feel incompetent and incapable and like a big chicken poop sometimes. There I have finally said it. I don't care if her family finds this site and reads this. I needed to get it out. It's out - and I am once again headed out to a snow bank to stick my head in it. Apparently I have some anger issues. You think? You are damn right I am angry. And for once I believe it's ok. Once I pull free from the snow bank the anger usually subsides quickly. I think I might have something here that works on anger and frustration besides medication and in the winter - along the shores of the Great Lake Ontario - snow is a plenty.

Jackie has settled onto her new floor, new room and new staff. She seems ok with the change. We both are. This staff sees her as someone who has the possibility to get home and this has had a great impact on Jackie. We have arranged for her to get a mug of soup at lunch and dinner because her appetite is returning and this tastes good to her. She has been in the cast for 3 weeks and PT resumed yesterday

Love your honesty. If you need help with the hand let me know. I just got Jackie a card holder. She beats me at rummy. I think she is cheating.........

Beautiful! I am not alone! I will be glad to remind you you did and will make sure there is a refill! Made me laugh!

I have always been pegged as seeing my glass half empty. I agree. I do see it that way. We equate this with the person being negative. I don

Jackie's Xmas eve outing was cancelled. The Friday before she decided she could transfer herself from her chair to bed and she broke her affected leg. She now understands, or at least i hope she does, her limitations as far as safe transfer goes. She has a beautiful purple cast. Her insurance coverage maxed out and we have moved from the rehab unit to a long term care floor Friday after Xmas. We were both stressed about the change. We bonded with the staff and they with us and change is always difficult. However - she seems to like the new room and the staff have been great to her. Speech continues to improve and her spirits continue to rise. The day of the move she was a bit agitated and I exhausted all the questions I knew except the one I did not want to ask. And when I asked her if she wanted to know why we weren't just going home - that was the one and I hate it. We talked. I assured her I was doing what I could. I decided the next day to include her in on what it would take to bring her home in the condition she was in right at the moment. I sat next to her and wrote a list of the required house renovations, the equipment, the "consumables", medications needed and what I thought she would need for home care aides. I interjected throughout this the research I have completed and the knowledge I have gained. I asked her if this all scared her and it did - I was afraid of that - and I let her know that I was not. I assured her that I have been all over this and it was really ok. It seemed to give her some reality checks on the level of her needs but at the same time some comfort that I was "on it". We now have the list and can look at it together and plan together. I was not sure I was doing the right thing by going thru this "exercise" with her but I am now. She gets it. I think it has given her some motivation too. I bought her some light weights to exercise her arm and she has eagerly started this. She is trying to eat food. She wants to resume her PT. She seems to be more active and eager to work at her recovery. Good things

Perfect! Why didn't I think about this - get as much as you can! This is exactly what you should tell us and she won't hate you - she will listen to YOU - you KNOW. I can live with this - more than - makes sense. It's what we need to do to get the therapy. And the song - fabulous! That's on for todays entertainment!

I am not sure why I started blogging other than some way to get out my feelings and feel safe around those who really get it. I did not expect people to read or comment. I received 3 comments to my most recent entry and was so grateful for them. I do not know you but I know you understand and won't be critical or judgemental. I copied your comments and will read them to Jackie today. I wish she could hear them right from you but this will more than do. We had a "Family Meeting" today. WE got updates from her therapists and talked about her admission into the Long Term Care Unit. Speech and PT will continue and actually the PT was rather surprised to hear that Jackie managed to wheel herself from her room to the elevators this morning - so was her nurse who was thankful she found her before she got off the floor. Jackie, in her best Planet Aphasia language (that includes facial expressions) made it clear whe was leaving. She was wheeled back and the WatchMate attached to her wrist. I thought it was fabulous that she did this - but not happy why. She seemed agitated - I don't blame her for wanting to get out. The admission to the Long Term Unit seems to be really bothering me. Just the sound of it and the thought of it - just plain all of it. How many conversations we have about not wanting to be placed in a nursing home. Regardless of temporary or not - it just feels awful to me. I feel helpess and that I should be doing something to bring her home. And it does not matter that I know that she still requires a high level of care - I heard it all this morning and I know it - it's the whole Nursing Home idea I guess. Just does not sit right with me. I believe she knows I am doing my best - I think she is doing her best too - that wheelchair escape attempt this morning was huge for her mobility! Go Jackie!