Feeling alone and lost

I have not got a diagnosis for my husband yet but its so difficult as he used to do so much and now he jist sits and I can't get him to do anything . I have been finding all kinds of stuff in trash cans almost daily I feel like a dumpster diver. if I asked him why he say I dont know and just like he didn't do it. I been busting my butt to do stuff around the yard and its so hard I come in ringing wet while he sits and watches. I have to go and sit in another room to keep from getting angry. I am worried about how I am going to care for him. It's stressing me out. What do you do if you have appointments can el them stay home 24 , 7 ?
Help with answers.
Cindy B
Comments
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The anger is hard. Try to get testing. Knowing what you are dealing with is key. It’s probably just as scary for him. ❤️0
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the behaviors you are describing are common with dementia. They don’t want to do things they used to do because they don’t know how or are afraid to. Trying to get him to do things will only make his anxiety worse. You will need help. Hire someone to do yard work if you can. Get housekeeping help if you can. Caregiver burnout is a real concern. Either hire caregivers or get family or friends to stay with him so you can run errands or go to appointments. Check with your county on aging to see if they have elderly daycare. Make up a fib to get him to go. For example they need help. Did you get a chance to read the book “The 36 Hour Day”? It helped me so much. We understand your anger. You are angry at the disease and what it’s taking from you. I would start looking into memory care as a Plan B. There may be waiting lists. Hugs. 💜
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I was extremely angry in the beginning of this nightmare. I thought my DH was intentionally doing things to frustrate and annoy me. Then I learned that it takes a three pound brain to do things intentionally and his brain was shrinking daily. The more I learned about his disease the more grace I gave him. He is no longer the man I married and grew to love over the years. He is now a host for this destructive disease. I’m still making peace with the fact that he can no longer help with things and the full weight of everything inside and outside the house falls on me. That’s of course when I’m not busy caring for him. But I love him and no longer hold it against him that life is different now for us. It’s taken me a long time to arrive at this place, but it’s much better than the anger and frustration I had.
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I needed my mom's doctor to test her and give her a diagnosis much sooner than he did. I had been seeing mental decline for 3-5 years.
Whenever mom & I spoke, there was always an argument. Without a diagnosis, like you, I often felt like she was intentionally doing the things she was doing.
With a diagnosis, I know what I am dealing with and now afford her a tonload of grace.
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You need to get your husband to a neurologist and get him tested. He’s not doing any of this intentionally. A diagnosis will help you understand his disease and plan for the future. Meet with an elder care attorney and get your legal affairs in order. Do this NOW. The people here are supportive and will help you.
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You have already received excellent advice here. I can only add that you are fortunate to have found this site as a resource early in your journey. I noticed similar changes in my DH 2-3 years ago, but had no experience with dementia and just thought he had stopped loving me. I only joined here a couple of months ago. You will get the best advice here from those who have lived what is to come of your life.
Try to find support. You may or may not get a definite diagnosis. I am planning an autopsy because it will be the only way to know definitively what type of dementia this is/was for DH,and I need to know and to have something to tell DH’s children.
An elder care attorney is the place to start if you have not done so yet. And medical professionals. You may be early enough in the disease for some medication to help.
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I have attached a staging tool that may help you make sense of some of the behaviors you are seeing. I agree with others. Get him tested and see a lawyer the sooner the better. An important rule when dealing with a person with dementia in never argue. There is no explaining or convincing a person with dementia. Just don’t even try. It will upset you both.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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