Hello out there


Well, it's Sunday morning and the DW of 40 years is sleeping so I have my hour or two before the fun begins - lol. Just found this site! My wife was diagnosed in 2019 and is fairly well along on her journey. Too much to go through here but in summary, our kids are scattered, we have some of her family here, in fact a sister that lives right up the street. But I'm probably preaching to the choir when I say, I still feel pretty much abandoned. There's really nothing like this that allows you to see people (and yourself) for who they really are. That's ok, I got it. Every day I go through emotions ranging from rage to unbridled love.
She has reached what I call the jabbering stage. It can really wear on you. I do my best to get her out, socialize, when possible, etc. It doesn't matter a wit really. She has nothing she likes to do - doesn't watch tv, doesn't like to do anything with her hands, no reading whatsoever. Sometimes riding in the car helps. I enjoy taking her out to eat or a movie but that is becoming more difficult. And yes, like many of you, I do all the everything from bathing, toileting, dressing, etc. I do have someone coming in a couple times a week in the afternoon. I can't go far though for long because of her attachment to me.
I've got a lot of experience now but also looking forward to discovering new things. So if you have anything I can help with or any suggestions by all means.
Comments
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Welcome. I also love my quiet mornings to myself. My husband will sleep quite late if there's no appointment to go to, so my quiet lasts until early afternoon! I am still in the early stages of this journey, and trying to learn about what is yet to come.
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persevere, sounds like your DW and my DW are running close together. My DW was diagnosed on Feb. 2019 also and the same issues for now. I to was going through the fits of rage because of abandonment, but I finally figured out, it was a waste of time and a lot of energy (still a flare up every once in a while but nothing like it was). We've been married this yr. will be 44 yrs. You got to appreciate the down time we can squeeze in. This morning I was able to get up before my DW and enjoy a cup of coffee while sitting on the porch, oh the simple little things in life.
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You might want to get the book The 36 Hour Day. I found it very helpful and insightful. And it validated many things I was observing. Also, use ChatGPT on occasion.
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I'm generally wary of the various AI systems, but more to the point, I think you will get much better and more trustworthy answers and advice from this group.
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Waves “hello” from another DW in the jabbering stage.
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Hello and welcome! My husband was just diagnosed this month so I’m still very new and learning daily.
This community is so supportive and welcoming its helped ease my feelings of being alone.
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This forum is the best most informative place. Our neurologist never explained anything, never suggested any books, just prescribed meds to stabilize DH and told me on the side “you know he’s not going to get better.” I’ve been reading everything I can on this forum for several months now, all the questions and answers going back to I think 2021. It is so informative and I’m not terrified anymore. Just kind of depressed but at least i know where we are headed. I have recommended this site to two other folks so far. And I give thanks to everyone willing to share their experiences here. Appreciate you.
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Welcome to this wonderful forum! I’m in a very similar situation as you are, where DH is jabbering a lot and isn’t interested in doing much. Sometimes I can get him to watch a little TV, but most of the day is spent walking with him (in the humid 90’s of Florida 🥵) or taking very long car rides to nowhere. It’s hard to find other ways to redirect him. Keep up the good work - we do it for love but we lose ourselves in the process sometimes.
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persevere, I'm also in about the same stage with my DW. Fortunately, I get a little bit of help from my boys that live in the area. I've never been a very talkative guy, so I've been surprised by how sad and lonely I feel not being able to have a real conversation.
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Welcome to the place for info and support. I don't know what I would have done without this group. Ditto on the book "The 36 Hour Day" which was recommended by a nurse. Also search for caregiving videos online from Tam Cummings & Teepa Snow. One thing I learned here early on was "you can't reason with someone whose reasoner is broken" and "don't argue with the PWD, get into their reality" Learn to fib to them, redirect or distract them. Ice cream usually worked for my husband. Have a Plan B if something happens to you. And lastly, search for the post on here about "The Cavalry Isn't Coming" - a post by someone who felt abandoned by friends & family. Sadly it's all too common. We understand what you're going through and are here for you to ask questions or just to vent. 💜
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@persevere My DW was showing clear symptoms beginning 2019 but, for various reasons, did not get a diagnosis of EO ALZ until a couple years later.
A few things you wrote stood out to me :
"Every day I go through emotions ranging from rage to unbridled love"
That is absolutely me. Within the same day, I am ready to send her off the memory care and then later that same day, committing myself to keep her at home until her dying breath.
"jabbering stage"
I like that. DW talks nonsense all day, all the time. Even when she is chewing her food. If she happens to wake up during the night, immediately the jabbering starts. As long as the tone is pleasant and content, I have no problem just tuning it out.
Like you, I have someone coming in for a few afternoons a week, but there is this complex "dance of distraction" we have to do so that I can escape the house without her trying to follow me. There is usually the meltdown that follows my depature, but my companion care is skilled and is able to handle it.
The "learn as you go" aspect of all this is hard for me. So much guessing about what to do…
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Oh yes, the car rides to nowhere - lol. I know those well. Just near the end of the day when you’re dead tired. At least we have a beautiful coastline along the Gulf here in Destin to gaze at.
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Wow, exactly on the jabbering. From the moment she opens her eyes in the morning until she falls asleep and then during the night when she’s up and down. And yes, while she’s eating. It’s mind numbing. And yes on memory care to never memory care. No one understands. They think they do, but they don’t.
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Ditto I was depressed scared crying and felt so desperately alone even with some family close by. This group is caring and are able to share in your highs and lows with practical help and advice. I no longer burst into tears and have more understanding than any medical expert that I have come in contact with. I have navigated my way to work out how to cope and still find love and friendship with my darling DH of 54 years. Two articles on this forum helped me enormously I suggest you look them up ‘The Caregivers Brain’ and ‘The Cavalry’s NOT Coming’ I think brilliantly written by Bill a member since 2001. Good luck.
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I have attached a link to the cavalry is not coming. I also attached a good article titled understanding the dementia experience.
https://alzconnected.org/discussion/62396/the-cavalry-is-not-coming/p11 -
Hi, Persevere and welcome to the forum. I've been on this journey a long time and my DH is now in MC. I still go through the whole range of emotions though. Visiting him elicits both love and frustration. Three things to remember; don't argue, try to reason, or correct. Try to "live in their world." My DH asks about his mom and dad and why haven't they been to see him. My DH is 85 years old and his folks have been gone a long time but he doesn't remember. Instead of reminding him, I tell him they are on vacation or they coming tomorrow. This keeps him from grieving his parents all over again. We call these fiblets. If you haven't already, you will need to contact an elderlaw attorney. They can help you set up DPOA for finances and healthcare for both you and your DW. This is very important and should not be put off. They will also be well versed in Medicaid rules in your state should the need arise. Another thing is having a "PLan B." This involves looking at memory care facilities in your area should you need to place your DW at some point in the future. You also need to think about what would happen if something happened to you. You are in chare now and I know this is a lot to think about but everyone on this forum is here to help and support you. I wish you well on your journey and hope you post often and ask lots of questions. I know this is hard and I'm sorry you need to be here.
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Welcome, though I’m sorry for the circumstances that brought you here. I’m brand new to this world of ALZ and so grateful I found this group as there are so many travelling this journey with us.
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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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