Talking and doing things together

shiawase12 · October 14

My DH with Alz often says he misses me . Even though we've been tosh all day. Especially if we've had a particularly quiet day without too much communication between us.

I try to think of things to do together, but not every day. We live by the beach and do take walks together most days.

He has given up most of his hobbies. Now it's mostly playing a game on his phone or scrolling on FB and commenting on political posts.

I do schedule activities for us a few times a month outside of the home.

I find that having a "normal" conversation with him has become draining for me. If I don't talk slow enough or directly to his face he often responds angrily "I can't hear you if your looking away" or "All I heard was blah, blah, blah" or " I have no idea what your talking about" is exhausting and often is easier to just not talk.

But I feel guilty so I at least try to be in the same room. Yet I'm thinking of things I'd like to be doing like working on memory books on the computer, making counseling appointments for myself etc. I've started using him as my excuse as to why I'm not doing these things and then of course become resentful and angry. But of course try to hide those feelings, but don't want to talk about it with him as he wouldn't understand anyway. A vicious circle.

All normal? Ughhh i hate this so.

Sorry this rant got so long. Appreciate all of you here.

Biggles · October 14

I’m hearing you loud and clear. I’ve ranted here often enough about the ability not to be able to communicate and how I miss it so. My DH has VD and aphasia his speach is getting more and more limited. I walk around with my iPhone in my back pocket playing our favourite music, would love to have podcasts on but the talking just sounds like blah blah blah to my DH and I need to be aware of him so I don’t want to use Bluetooth ear pods. I hate this disease. You sound like you are doing so well organising your days, I try to do the same or the days are so long, tiresome and depressing. Maybe we could have an exchange of ideas and how we all fill in the days. I find I have to focus on something and then expand on it. Like today it was our puppy I decided he needed some new toys so we went to a new secondhand shop. Everyone is always so kind at these places, they accept our puppy and us and share kind conversation. So nice to slowly walk around, not busy like the normal shopping centres. Some takeaway for lunch sitting in the park and that was our day today. I have a few projects on the go and can’t wait until my DH drops off to sleep in front of the TV then I spend the precious hour doing something I can’t do when my DH is awake. I do feel as if I’m getting a bit sluggish though and this worries me but I try to stay in the moment.OMG it’s all so hard. Don’t feel guilty you sound like you are really doing great.

Nancy13 · October 14

https://alzconnected.org/discussion/74346/talking-and-doing-things-together

Hi. Here too. Dh 73 . Phone scrolling, gave up hobbies. Quit the sportsman's club says he can't text, plays solitaire on phone. And these are our best days! Retirement. Every day there's new chaos

suvi · October 14

This is what I’m dealing with too. If I have something I want to share with my dh (AZ and aphasia), he can’t understand what I say so I’ve just given up. It’s too frustrating and sad. I just engage with what he talks about, or keep it short and cheerful. He doesn’t like to do much besides watch tv. He can’t work his phone, doesn’t read anymore, wants to come home when we go out. I feel very guilty that when I have what little free time there is, I just want to be alone. The constant togetherness is suffocating me. I’m trying to be grateful for what is still good or at least not worse. I obviously don’t have much to offer in the good ideas department, but I commiserate.

trottingalong · October 14

I’m 69 and my husband is 81. He rarely leaves the sofa. He has emphysema and dementia. A difficult combination, but aren’t they all. He’s not on oxygen thank goodness. We live in a tiny development in the redwoods. I have a beautiful road I walk to the river, which is one mile long. I can’t always do the full walk because I worry if he calls I can’t run fast enough, but getting out with my nearly 3 year old shepherd is heaven. I also read. I’ve become too sedentary and I hate it. We were outdoors people, he was a fly fisherman and then we bought an ocean boat we fished off for years. We were rock climbers and mountain bikers, I’m an equestrian (trail rides), all that stopped. I cannot have conversations with him because nothing makes sense, he gets angry or it stresses him out. I enjoy baking so will often go in the kitchen and bake something, unfortunately I also eat it. I cannot get him to leave the house at all. No drives to the beach (15 minutes from our home), cannot go out to eat and resents if I take my weekly walk with a friend. We are all in this together, aren’t we?

Sunfish47 · October 14

My DH is also at this stage of not being able to hold a conversation with me about anything. So sad … previously he was a highly intelligent person with a quick witty sense of humor that always made me laugh. ☹️ Yes this is what it has come to now.
I do try to face him as I speak slowly, cuz he does have hearing issues (83 yrs old) and it helps. As people start to experience hearing loss they develop the ability to lip read (my mom’s Dr told me this many years ago).

RetiredTeacher · October 14

I wish I had more to offer. We are all on separate journeys but so many overlapping experiences. My husband doesn't read, have hobbies, have friends....it's just me. He sits alone as walking has become difficult. He does use a walker when we go out but has emphysema and can't walk far without stopping to sit and rest. He does use a scooter when we go to the grocery store and I find a reason to go to the grocery store at least once a week, sometimes more often. We go to the farmers market whether I need anything or not and go out to lunch every Friday. We run errands at least once a week just to get him out. Sometimes we just go for a drive to get out. I used to be so independent and active, I miss that so much! I struggle that I have no autonomy anymore. I can still get out for a couples of hours once a week for my sanity but i could really use a lot more. We have a stationary recumbent bike I encourage him to get on to help his muscles and circulation. I enjoy sewing and machine embroidery and I try to carve out time to do these things, even if it's while he naps in his chair. When he wakes up he finds me in the sewing room and sits there watching me. It used to creep me out when he shadowed me but it's now the only way I can continue doing what makes me happy. You need to find a way to take care of yourself and fight to retain your own identity. I do realize it is really, really hard but I am hoping I outlive my husband and want to still have a zest for life when that time comes. I used to be so strong and independent and I need to hang on to that part of me, even through this horrific disease. Hugs and prayers for all of you having to deal with this.

Cathy coconis · October 15

https://alzconnected.org/discussion/74346/talking-and-doing-things-together

this sounds so much like my DH with Alz. I miss the communication but you’re right, sometimes it’s just easier to not talk. It’s difficult to repeat over & over & still know he doesn’t get it. He looks like he used to- maybe I should have him wear a sign saying, “Remember I’m the one with Alzheimer’s!”

Sounds funny but really I expect him to be as he was sometimes- I have to adjust!

But for all of you here, I get it. How we used to have a life, be active, & now my DH just liked it at home, doing nothing. If we go somewhere he wants to go home right away. He was reading, then stopped; started again when I brought home books he’d like. Read for a while then stopped again.

Hobbies- gone. At least he likes to ride his lawn mower for now!

this does all suck, for everyone😕

tmmcwilly · October 15

It know it is harder living with your LO with dementia/ALZ. I struggle with both of my parents with mild-moderate Alzheimer’s and they don’t live with me! Here are some ideas for some together time. My mother is an endless question loop, so I find looking at family photographs incl her childhood and my travel pictures on my iPad (so I can expand the faces) helps keep lfamily fresh in her mind. Doing easy puzzles or an ice cream treat are enjoyable for her and don’t drive me to frustration. They can’t talk or listen & eat. Why not include him in your scrapbooking to some extent, show him prize photos and reminisce - he may even surprise you with his recollections — I found that photos are a great memory jog - and perhaps give him two (only) choices on color or design elements.

Dad can’t enjoy his hobbies or reading any longer and never learned any card or board games. He just wants to have a purpose, a mission, so yard work (not ground weeding of course) like trimming and clearing debris, and herb gardening using raised garden beds (Wayfair has easy to assemble small plastic ones or wood) (and Gardener’s Choice for serious business). Getting another with good drainage, so he can make a butterfly garden. Could also use same for carrots and tomatoes. Etc. I will ask him to help me put Christmas lights on the bushes and mailbox. I may see if he can do writing prompts about his life: see storyworth.com or https://www.getmemowrite.com/ . You can use or tweak their prompts or add your own, one prompt a day.

He really lives to walk among the trees/park to feed the ducks cheerios. Some elder people at ALFs have small tortoise huts. My mom had cats all her life, so I applied for a grant for a robotic cat she can pet even though she still knows he isn’t real, it is made for the elderly and that purrs, meows and moves it’s head and paws, but you can also turn it off. Good luck.

tmmcwilly · October 15

Don’t forget how good playing their kind of music is for their spirits. Create a playlist for hospitalizations. Maybe you can find an old boombox at a thrift shop you can play old CDs or tapes on that could be left playing in the hospital past visiting hours, sweet talk the nurse into playing it.

tmmcwilly · October 15

I am glad you are finding some balance RetiredTeacher. It’s better for you, which is also better for him. So many people fall into the rabbit hole forsaking their own identity. And of all people who deserve some me-time, teachers definitely do! ( nurses and first responders, also). 💙

sherryandwilliam · October 15

https://alzconnected.org/discussion/74346/talking-and-doing-things-together

That was the hardest for me losing the ablility to have a conversation with my husband that was in his earlier stages of alzheimer, I was used to having him as a sounding board and when I lost that It was a major loss losing his support, Now he can not even get out a coherent few words. I just look at him and smile and say OH yeah, being agreeable seems to work. I feel for you going though this

Biggles · October 15

https://alzconnected.org/discussion/comment/256050#Comment_256050

https://alzconnected.org/discussion/comment/256051#Comment_256051

We are all in this strange little world of our own together on this wonderful forum, sounds odd but there it is. My DH is the same not interested in anything anymore, can’t do anything, can’t talk, yet here we are, caring doing what we can to make life as comfortable as possible. We must never doubt how important we are, for me this is the most difficult and challenging thing I have ever been faced with and it’s awful. Think I’m tired must go to bed.

trottingalong · October 15

Difficult and challenging sure sums it up perfectly. I hope you got some rest.

Talking and doing things together

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