Need help accepting this and dealing with what is to come.
Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.
@birdhouseclosed you've found a great place for support. I do not know what MCI is, can you explain it to me?
I don’t know what MCI is either but you’ve come to the right place for support. I care for my sister with moderate stage dementia. The group has always been here for me. The scary part for me is that I am only 2 years younger than she is. I don’t know for how long I can keep up with care for her. God knows and so forward we plunge!
Thanks for the reply. MCI mild cognitive impairment,or in simpler terms dementia. We do not know where it will lead possible Alzheimer's. I am trying to deal with the repetitive questions and being so alone as he sleeps so much during the day. I am three years his senior and am worrying about myself,is it stress or am I losing it.
Hello @birdhouseclosed Nice to e-meet you here on Mayo Connect! I am Scott and I am sorry to read of your spouse's healthcare journey. I am guessing by MCI you are referring to Mild Cognitive Impairment. If not I am sorry for the wrong guess — and I know what they say about assuming 🙂
The caregiving journey is never an easy path, but one we often find ourselves on with little warning and even less training for it. I was my wife's primary caregiver for 14+ years and a secondary caregiver for my mother-in-law, when she had dementia.
One of the best aspects, at least to me, of Connect is what a sharing community we are! While each patient's journey with their disease is unique, as is the journey of their caregiver, there is much to be gain by looking for, and asking about, hints, tips, and ideas for how to navigate the world as a caregiver.
Acceptance of seeing our loved one with a chronic, fatal disease is very difficult and for me was a very 'up and down' thing. Accepting at times, dang mad at others, depressed for some of the time, and always confusing! I wish there was a magic potion for this aspect of caregiving, but I never found it. That said, the one thing I always tried to do was remind myself, as the times got more challenging and my wife's condition deteriorated, that I was dealing with what the disease was doing to her, not what she wanted to do, say, act, etc. I also kept an old pillow in another room where I frequently would cry into it, punch it, and at time even swear at it with quite a bit of gusto!
Please feel free to ask any questions as their are loads of helpful folks here! If I may ask, how long have you been caregiving? What do you find the most challenging about this new role?
Strength, courage, and peace!
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You must have untold strength. It has been 3 years of dealing with this. Yes you are correct MCI is as you assumed. I find that taking over his role as far as finances and important decisions go is challenging as he was always my ROCk an could always count on his decisions and help. I am dealing with depression and anxiety, but I can't find a way out as of yet. I am under treatment but find I cannot talk to him about how I feel which would make him feel irresponsible. I would appreciate any insight anyone could give.
Hi again @birdhouseclosed I, too, believe worry and stress are huge components of caregiving as you point out. As with you and your husband, my wife and my roles also changed 100% with her diagnosis. My personality changed significantly from pre-caregiving (easy going, a bit devil-may-care, etc.) to a very different once in my caregiving role, when I became very goal oriented, focused, and driven. Understandable when you realize, as you point out, all of sudden so much more of the weight is on your shoulders.
So many times I, too, wished I could have talked to my wife about the caregiving demands, finances, concerns, etc., but like you know, it would have made my wife feel even worse than she already did. The only issues I did push directly with her were our need to get all the legal issues, estate/will, living will, HIPPA, last wishes, etc. put down on paper. Tough discussions, but in the end I know it did bring her some peace as it did to me and our grown children, and others when future decisions had to be made.
Wish I had some sort of magic to help caregivers when these feelings rear up.
@IndianaScott @birdhouseclosed my situation is different in that I am carrying for my spouse that needs a transplant. The one thing that is similar is that he has some cognitive issues, so his decision making isn't always the best. He is the one that pays the bills but he struggles with it now, so I have to help. We've got the paperwork for an advanced directive sitting on our coffee table and we both agree it needs to be done, but like you said, it's a hard discussion, so we keep putting it off. His one year work-up is in a few weeks, so I would like to have it done before we go for it.
You are correct in getting all the legal paperwork in order. We did that right away as he was as anxious as I was to get it done before it was an issue. As far as Bill paying goes we put all we could on auto pay or reminders on the computers,this did relieve the problem somewhat. I always liked to say ""one day at a time", now I am trying to live that way. Warm wishes to all.
Good morning @jodeej I sympathize with your having the paperwork out on the table! I kept ours taped to the fridge for awhile! In our case it was a tangential discussion, which got my wife to get this all done.
There was a family disagreement regarding what different people wanted done with my father's ashes. My mom wanted one thing while my sisters wanted something different. My mom asked me to 'broker' the deal and get her wishes followed. It was much more difficult than if it had been in writing ahead of time. My wife decided she never wanted anything like this to happen so she decided to act on the whole bunch of difficult end of life issues. She even went so far as to design her own 'Celebration of Life', its music, eulogists, who she wanted to be invited, and even what wine she wanted us to serve.
It made an incredibly sad time when she passed away a bit less devastating by not having to deal with any questions as to 'what would Mom want', because she told us and we had it all in writing!
I would like to encourage everyone to consider body donation to your nearest university anatomany department. We made this decision many years ago and have willed our worn out bodies to the University of Iowa. Alive we have always dedicated ourselves to education and helping in any way possible. As we approach the end of our journey on earth, we continue to be happy with our decision. The money we do not have to spend for traditional funeral expenses will also be donated to a worthy cause. Not for everyone but worth consideration.
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