Does anyone experience this

KDSG · August 5

I try to take my DH out to do things, like listen to music, a movie, dinner, grandkid’s ball games.It is such a project, he asks the same questions over and over even though it is a place we have been many ,many times. By the time we are ready to go, I feel like I don’t want to go because once we get there I have to tell him everything all over again and how to act. He is very kind and compliant but he has forgotten how to order food, or which grandson is playing or even where we are. I know getting him out is good for him so I keep trying. He is stage 5 with some stage 6 behaviors. I just feel so exhausted sometimes.

jgreen · August 5

Hi, @KDSG

My DH is about the same stage as you. I have found DH does better with a routine, and staying home is pretty much the order of the day for us. We now have friends who come to visit, and I try to keep the number really small. When we do go out it is usually for a drive, maybe pick up a picnic lunch, and eat at a park. We are close to the coast, so sometimes we head to a quiet place on the beach (during the week). Restaurants are a thing of the past.

Now getting out for you is a good thing, and you need to do that. Perhaps a friend or a family member can come stay with your DH while you get out for a few hours? If the grandkids are old enough, let them know that grandpa has trouble remembering things so he will need their help if they want to play cards or a board game. Or to entertain themselves while the parent visits with Dad.

Maybe others will have some ideas that are different and will help you and your DH get out to enjoy yourselves.

You are a great caregiver! Give yourself a pat on the back for trying! I am sending you a hug 💝

annie51 · August 5

Yes give yourself a pat on the back for trying your best. You’re human so of course the constant attention you need to give him is exhausting. @jgreen gave you some great advice, especially as it relates to getting you out.
Once my DH was at the late 5/early 6 stage, I would refrain from telling him about an outing until just before going. Otherwise he was getting antsy, wanting to go right away, asking questions, waiting for our friends way too early. It was easier to just wait until we were about ready to go and say “how about we go for a walk in the park” or “let’s go bowling” or “our friends are picking us up to go to dinner”. I also moved to simpler activities as time went on.

Jeff H · August 6

I feel for you and I understand what you are going through.

My DW was in stage 5 with some into stage 6. She is clearly in stage 6 now. I used to take her out every morning for breakfast to give her a routine. She really liked it at first. I can no longer do that. She got antsy in the restaurants waiting for the food to arrive. She even tried to leave after we ordered our food. My DW is home bound now and is comfortable with that.

I have actively researched in-home respite care companies that are private pay. Both offer services similar in pricing at $30 per hour with no minimums or maximums and can be on call if their schedule permits. I had two interviews this week and one is very promising. I will be using them for a few hours of relief as needed.

I hope there is something in your area that offers that service for you should need it and can afford it.

terei · August 6

YOU need to get out. I dont think at the stage you are describing that a change in his routine is really helpful to him. Try to arrange it so you can leave him and socialize with others and get a break.

bjtm1969 · August 6

KDSG, I understand exactly what you are saying as we are experiencing similar issues. It is so draining. You are doing a wonderful job attempting to get out! I often wonder if it is worth all the planning, repeated questions, and aggravation to participate in the outing. Our daughter and grandchildren are 3+ hours away so we have stopped traveling to see them as I had shingles again after the last trip! We have rented a Vrbo close by so they can spend time with us but we can sleep in our own bed and head home when necessary. As I am typing this, we are planning to go out to dinner on the water front but am about ready to scrap it because of the repeated questions, need to change clothes and get cleaned up after doing yard work etc. We are together 24/7 with no respite but will need to look into that in the future. My husband is still very social and aware so that will be difficult. I wish I had some suggestions different from that offered above. Just know you are not alone. I am usually glad that we went out afterwards, which I try to remember, when planning future events. Hugs to you.

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SDianeL · August 6

The last few times my DH and I went to a restaurant, I didn't give him a menu or ask him what he wanted, I just ordered what I knew he would like. I distracted him by talking to him after we placed the order and that seemed to help his anxiety.

KDSG · August 7

Thank you everyone for your posts. All of your ideas are very helpful. I am learning to tell him we have an appointment just before we are ready to leave so he won’t wake me up at 4 AM to get ready. I am also accepting that he really prefers to stay home but likes to go for drives so we do that every day. Thanks again for all of your supportive suggestions!

Biggles · August 7

KDSG my DH is compliant and very kind too, he also cannot order food, go to the toilet or make that pleasant social conversation but we still go out. I try to pick places that are conducive to those who are compromised. It is such hard work going anywhere but I don’t go out for my DH, I go out for me. I push myself to go. I’m sure my DH has no idea of where we are going or is even interested. I am very sure he would rather be left slumped in front of the tv at home but I know it is good for me, and most times I find DH is sort of refreshed. Stay strong and determined, think of yourself first in these instances and bring your DH along for the ride, always being kind and considerate but for the carer to stay social is a very important part of surviving this awful disease.

Snipe · August 7

My DW is also stage 5. Going out to restaurants is a very rare occurrence. She usually tells me to order something for her, the menu can be very overwhelming, and she does wonder why our food doesn’t come right away. We do get out to our grand daughters sports games and an occasional baseball game but, like annie51, I don’t tell her what we are doing or where we are going until closer to the time. She just gets too anxious asking the who, what, when, where and whys over and over. It is exhausting. Is there a daycare option available? I have my DW going to daycare a few days a week for half a day. That helps both of us.

MariaN26 · August 7

My DH is also stage 5 and we are having similar problems. He likes to go out and do things but it is often difficult and exhausting for me. He can’t order his food any more and I found it is best to just give him a couple of options and then order it for him. Now he always wants what I have once the food is brought to the table. I started to just share the two meals between us or order the same for both. Our children and grandchildren want to keep him engaged and make memories with him so they like to make plans but I have to be selective about where we go. Some places or activities are too over stimulating. Navigating through his confusion in new places, his frustration and moments of anger when he starts to get tired and trying to help him through everything can be exhausting. I love seeing him enjoying himself with the family but outings are getting harder. The beach is a familiar place he loves so that is a safe go to for vacation. I know that vacations with the family are not going to be possible as he continues to advance so I am just trying to make the most of it while we can still join them at the beach. Returning to the same condo community at the beach has helped.

WIGO23 · August 8

I take my DH to the same Panera every morning for his coffee and my tea. The staff knows he has MCI and are most kind. He can still get a refill for us and I encourage him. I do have to keep an eye on him being sure he returns to the table without problems.
I need this routine as much as he does. I need to get out of the house everyday. The familiarity of the place makes it possible, I think, at this stage.

Vegan Tree lover · August 9

https://alzconnected.org/discussion/comment/279193#Comment_279193

Hi, I agree with the tight routine, eating at the same time every day, walks same time, sleep same time works the best for my DH. This seams to help with his exhaustion in the late afternoon. I applaud you trying to take your DH out and about. Make sure you get enough rest for yourself.

sandwichone123 · August 9

When my spouse was moving through stage 5, I moved through different ways of going out to eat, until we stopped entirely. Most often I would point to a picture on the menu and ask, "Do you want the…(whatever I thought he wanted)." Later I would just order for him. He loved being in restaurants and didn't have trouble waiting for the food.

A little earlier, just entering stage 5, we went on a long-delayed cruise and he was completely unable to eat in the main dining room. He just didn't have the patience to wait for each course, so we had to eat at the buffet every meal. It was sad for me, because dining is my reason for going on a cruise.

Biggles · August 9

oh yes I need to get out of the house everyday and I need a routine for my DH as well as myself. This is my survival. I have to pick the moment of going out, there is a small window of opportunity and if I miss it the rest of the day is almost unbearable. I plan in my head what we are going to do then work towards this. I can only do one specific job a day like a doctors visit or a hair cut but then I might sweeten it with a drive-through visit to Maccas and a milkshake or burger and a little wander at the marina. I calculate my time and spend as much time out as I can . We might leave home at say 10,30 and get back, after a delayed milkshake, at 2.30 it helps the afternoon to be shorter and go quicker. I’m becoming a master at micromanaging time. Not really my idea of fun.

Does anyone experience this

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