New to the Forum

I’m new to the forum but not new to being a caregiver.  I was Mom’s caregiver 30 yrs ago when she was diagnosed with Multiple Myeloma. Now 30yrs later I find myself dealing with Dad having dementia.  I feel so stupid that I did not see the signs of it coming. Dad lives in FL and I live in NY. Last March Dad asked me to come down to FL to take him to an attorney to do a will, Health Care Proxy and DNR.  I did and noticed he had tremors in his right hand. The heat was up to 90 degrees in his house.  He had a shuffle in his gait. He had been losing a lot of weight and I noticed he seemed to be partially unshaven. 

I flew down again in June for Father’s Day and dad’s demeanor was different – more combatitive.  Normally Dad and I spoke at least once a week. By June he stopped calling me. While he never quite had my birthday right he’d always send a card. Last November I didn’t get a card. I called him for Thanksgiving and Christmas. When my husband got on the line he didn’t even recognize who he was.  To make matters worse, the day after Christmas I get a phone call from the local police telling me that dad insisted there were people from the Government in his house putting tags on things. Of course, the Police investigated and found nothing. He claims to have heard from my prodigal brother who he hasn’t heard or seen from in 25 years. 

Then on January 10, I get a phone call from the hospital telling me dad is there with dementia and congestive hear failure. He’s been transported to a Nursing home where he is incoherent. I am a total wreck. I can’t concentrate at work, my husband is less than supportive calling dad “crazy”.  Is it me? Am I being too sensitive? When is it time for Hospice care? There was no Hospice when Mom got sick so this is all new to me. Any help or guidance is much appreciated.  



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submitted by on Wednesday, 11/01/2017 - 3:59pm

I am new to this form, this is my first post. My husband has been diagnosed with LBD, which I had never even heard of!! Oh well, do now. Am I scared? yes, I am. He quite frankly is in denial. Doesn't sound like this is going to be a fun ride. I worry about finances and I never know if his decision making is because of the LBD or it's a good day ?? He gets very defensive if I even ask him about bills. I pay the majority thank goodness. Now he has this great idea in his head that we should purchase a condo down in Myrtle Beach. We live in NY. Last year we sold our Winter haven in Florida because it was just getting too expensive. I've tried to talk him out of it. But, he claims all I think about is money and how just about everything has been taken away from him. He also has COPD.. took him two years to accept that!!
How do others cope ?? dona d

submitted by on Sunday, 01/30/2011 - 8:21pm

Another thing that is different from when your mother was ill is all the resources available to us on the Internet. Pretty amazing, really. You can find all kinds of information about the disease and also connect with other caregivers. I find both of those to be valuable ways to counteract the feelings of helplessness and isolation as I deal with my husband's Lewy Body Dementia.In a way your husband is right -- I wouldn't call your dad "crazy" but he is cognitively impaired. He has a progessive chronic condition for which there is no cure. But there are measures that can be taken to improve and preserve quality of life for your dad through each stage of the progession. Few of us want to abandom our loved ones when they become "crazy" in this way. Instead we want to contribute to the comfort, dignity, and meaningfulness of the rest of their lives. This is a hugely stressful undertaking. I hope your husband will come to see how much you need his support and encouragement right now. Doing this long distance adds stress to an already stressful situation. You need to take care of yourself as well as do what you can do for your dad. Your husband can play a big role in helping you take care of you, without getting directly involved in your father's care.It sounds like your Dad was thinking ahead last March when he set up some provisions for a time when he might be incapacitated. Are you his medical proxy, or it is someone more local to where he lives? If it is not you, is it someone you can work with comfortably in your dad's best interest?I have no direct experience with hospice but from what I've seen I would definitely want their services for my husband when he reaches the end stage. I hope others with experience will share their knowledge. Hospice is another topic you can research on the Internet.It's not you -- this is a hard, hard role we caregivers have been thrust into. Hang in there!

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