Coping with the Guilt

Re: I really need to vent,,,,,

johnday — Sun, 16 Jan 2011 11:11:31 GMT

Thanks Merret for reminding me it's OK to ramble once in a while, and thank you for your blog.

I've known all along I'm not the only, or the first, or the last to experience this. But, it's easy to think you are sometimes. All this is for some reason. It may be to teach yourself, or someone else a lesson. We can only hope the lesson will be learned, for who ever it's for.

Re: I really need to vent,,,,,

Merret Anne Mann — Sat, 15 Jan 2011 18:14:13 GMT

Dear John,

I hear you loud and clear! Thank you for taking the healthy step and venting... honestly getting this out and on paper (or screen) can do a world of good for your own psyche. So, well done.

People are interesting and are often motivated by "odd" things, to put it mildly. I am sorry that in a time that you are challenged and doing the best that you can you are feeling attacked. Especially by parties that are not willing to do any of the heavy lifting or get into the fire with you! I hope you have taken the feedback from Hospice that "you are doing a fabulous job" into the equation a much greater magnitude. These are professionals, they know what they are talking about. It is only in our own humble self-esteem that we are able to move from a position of confidence. I know you are on shaky ground with all that you are managing with your wifes care. I am sure you are grieving as well - I would like to direct you to the link of a blog that I created recently that may be helpful

Tools For the Journey

Thanks for posting- All the Best to you

Merret Mann

I really need to vent,,,,,

johnday — Sat, 15 Jan 2011 11:48:37 GMT

,,,,,and don't have a clue where to begin.

I am caring for my wife who was diagnosed with AD in 2004, but I suspect she may have had this terrible disease a year or so earlier. She has lung cancer as well, and has been given a year or less. She is in no pain, at least says she is not. I have not told her of the cancer, she is in the stages of AD she likely would not understand/comprehend the issues. I have had a number of health professionals agree with this decision, and her family, I think.

There in lies a bit of my problem. My wife has three sisters, the closest one lives over 200 miles away, but manges to "vacation" less than 50 miles away all summer, and has spent possibly 2 hours at our residence. One is a RN in California, 2500 miles away, who in the ten and a half years my wife and I have been married, spent a grand total of 2-3 hours around us at a funeral. The 3rd lives in Denver, 1500 miles more or less. She calls weekly, sends cards, and visits when she can, no problem. She's a great person.

I feel the other have 2 have actually ganged up on me. The one out in Cali, who admits she doesn't know me, sent a very scathing letter to Hospice of Michigan, describing my incompetence, and unwillingness to care for my wife. She hit on my "inability" to handle finances, my "inability" to maintain a safe home, etc. Basically tried defaming me as a complete inept boob.

The closest one visited us shortly after Thanksgiving on the way back home after spending a number of days at her vacation spot. I sensed there was a problem, but couldn't put a finger on it, until the nastygram was sent to Hospice, then things made sense, it was nothing more than a info seeking mission. And into the "feeding frenzy" go they. I had always thought I could count on the claosest one, actually thought the world of her as well. Was I ever mistaken.

I may add, that Hospice of Michigan has zero issues with my care of my wife, the condition of our home, and has even told me this when I asked if they could see anything I could do better.

It appears to be a control issue between my wifes sisters and myself. It's the old story, "I'd help if I could, but I can't" from the nearest sister. But she'll spend hours on the web finding info for me on issues I already have knowledge, and not once suggested I bring my wife to her house to spend some time with her. Both are bent on getting my wife into an AFH, even though she is beyond the pointe of any within my area of accepting her, basically a nursing home is the only alternative. I have chosen to care for my wife at home as long as I can, and my choice has been encouraged by hospice, they are the only ones that have given any meaningful support to either my wife or I.

How can people be so heartless? It's like hit 'em while they're down.

I won't mislead, there are financial issues due mainly to the economy and myself having to quit working. I know most of you realize that Medicaid wants you to be destitute before they'll help.

Well, any way, hope someone can follow these ramblings, and allowing to me to vent a bit.

Thankyou.