Sad caregiver

Whatdowedonext · January 21

I am sure blue. I work so hard to stay cheerful, keep my spouse occupied and happy. I can never meet his needs, I am always a step behind.

charley0419 · January 21

aren’t we all

Cardenas1816 · January 21

I’m running into the same issue with my DH (57) who has EOAD. He is constantly asking what we are going to do next, but I find myself not wanting to do anything at all because I’m so sad.

We have a state park pass and do a lot of hiking. And I’ve found a small jazz club that he likes to visit. Other than that, I am still searching for easy to plan activities.

midge333 · January 21

I think what @charley0419 was saying is that you are not alone. I don't think he was being snarky but rather he was supporting you. We all have our unique struggles but we also share many of the same struggles. Early in this journey, I found great solace in knowing that others were dealing with the same issues I was. It was also reaffirming that I wasn't losing my own mind as well.

fmb · January 21

Please don't delete your post. Sometimes the obvious needs to be acknowledged. DH and I are much further along the journey, and I can assure you that many if not most of us feel the same way at times. Your post is totally appropriate. You are in a safe space among friends here.

DTSbuddy · January 21

charley0419 Stating the obvious? Maybe, but it helped me feel a bit less alone. Misery loves company. Listening to music helps, and sometimes dancing to it.

Whattodonext It's really difficult. My daughter in law, when she heard the diagnosis, said, ' Oh no, Now you have to do everything.' Starting now my DH's 5th year of fluent primary progressive apahsia, we take walks and take notice of birds, airplanes, construction, pretty sunsets. He is unable to speak or write intelligibly, but understands a handful of words. He looks at magazines and photos, which i gives me time to read a little and type. Though he is unable to play sports any more he can still hit a ping pong ball back! He does everything so slowly now, that I count it a good day when he dresses and brushes his teeth. His confusion is profound, so I do not ask anymore why he threw his shirt out the window, or put an applecore in the silverware drawer. I just celebrate the smiles and try to keep calm as I clean it up. . Most difficult is his roaming in the middle of the night, If I do exercises and stretches until he gets sleepy again it keeps my from getting angry. The yard is a mess, and the house needs repairs. But most important is keeping our last years as happy as possible. Best of luck to all of you who are coping with these challenges.

SDianeL · January 22

We all have felt like we are a step behind. It is sad. Just do the best you can. He’s lucky to have you. I found that making a list everyday and marking things off made me feel like I was in control. I focused on my DH when he was awake and did everything else at night or early in the morning. I also hired someone to help clean. When I got stressed I remembered something my favorite boss told me. The 4 D’s: Do, Delegate, Delay, Drop. I used that when caring for my DH. Do what you can, Delegate when you can, Delay what you can postpone and Drop what doesn’t really need to be done. Sending hugs. 🤗

Maru · January 22

https://alzconnected.org/discussion/71834/sad-caregiver

My DH may not have reached the place in his progression that I will feel the need to keep him busy, but I really never would have thought that that was going to be one of my responsibilities. I know right now that I will fail miserably at that. Good luck to you and to all of us.

trottingalong · January 22

We are all in this together. The company of others who understand, can offer ideas or just commiserate makes those here on this board invaluable.

Bailey's Mom · January 22

I am amazed daily at what my responsibilities (which I never signed on for) are…I wouldn't mind at all if weren't for the constant anger and nasty responses…wears one down by the end of the day.

Buggytoo · January 22

It is a long, excruciating journey filled with hard work that is spiritual, emotional, physical, and financial. It isn't surprising we can find ourselves exhausted and used up. Sending love and comfort to all of us who are on this path.

charley0419 · January 22

https://alzconnected.org/discussion/comment/234579#Comment_234579

I was absolutely supportive of you just me we all in same boat. Keep the gsith

charley0419 · January 22

I’d be lost without this group

charley0419 · January 22

https://alzconnected.org/discussion/comment/234645#Comment_234645

keep the faith

Russinator · January 22

I have those same feelings and thoughts. ((HUGS))

Lgb35 · January 23

if he likes taking hikes and looking for birds could you put one of those shows on the tv that are like a walk through the Amazon with nothing but the sounds of nature. I am not sure of what they are called. Maybe the calm app.

Biggles · January 26

So many replies I think you have found our Achilles heal. I am the same, working so hard to stay happy and positive. It’s Sunday I’ve just baked a cake in the hope that we may have an invitation for a bbq with our daughter and family (about the only social outing that is comfortable enough for us to go to) and sitting next to my DH on the couch, I’ve just finished reading a sailing article on cruising the Australian east coast and dreaming of things that might have been. He’s now fallen softly asleep. I’ve also realised that with this crap disease, what’s missing is the pampering of my sole by my DH. The spontaneous cuddles, the spontaneous laughter, the “I’ll get the wine you get the nibbles” or even a cup of tea, the “wow you look nice tonight let’s go out for dinner” so sad but I’m glad we had it all once, it seems a long time ago. Thank goodness for this site, a place to cry, reflect and vent. I too would be lost without this.

wose · January 26

Blue and many steps behind is so me in a nutshell. I just keep forgetting that he can’t do and understand some of the time and that’s what starts the spiral. It’s all somewhat perfectly normal and then boom, it isn’t anymore. I’m blue cause of the constant uncertainty and cowering around. I never know from one minute to the next if it’s gonna be a good one. I’m so sorry, you’re not alone💕💙

Bailey's Mom · January 26

https://alzconnected.org/discussion/comment/234954#Comment_234954

I feel like that too…this morning I was still in bed (on the couch in the family room with my dog) and even though I was freezing cold, I didn't want to get up because HWD had been up for hours and I didn't know if he would be in a full blown melt down or if the morning would start out with a few hours of somewhat calm. I am a nervous wreck all of the time and like you said 'cowering around'. It is quiet now, but that will change as the day progresses. Hope you have a good one.

jehjeh · January 26

https://alzconnected.org/discussion/comment/234953#Comment_234953

I, too, am glad we had so many good years before this terrible disease struck my husband. His was the shoulder to cry on when things got tough. I need that shoulder now but crying would upset him and I'd end up consoling him. It's hard to hold back the tears but I'll keep doing it as long as I can.

Biggles · January 29

https://alzconnected.org/discussion/comment/234581#Comment_234581

DTS this is like looking in a mirror. My DH has Aphasia along with all the other things you mention including wandering in the middle of the night which is probably the worse as you become sleep deprived. It's all so very sad, thank goodness we connect and know that we are not alone. Take care.

Sad caregiver

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