The dementia routine

RetiredTeacher

I know all of our journeys are different but many are scarily similar. My husband has no initiative and does the same pattern everyday. His day is focused on eating and going to the bathroom. Other than those things, (which seem to occupy a great deal of time everyday), he would just sit in his recliner in front of the TV. He nods off frequently throughout the day and even when he's awake, he seems not to be engaged in what's on the TV. I make comments about something he's watching and he seems to have no clue what I'm talking about. I try to get him outside everyday to get him some movement but he's so focused on his routine. He wakes very early to have coffee and a bran muffin. He talks about food a lot. After the muffin, his next focus is when he gets cereal.About 11 he's focused on lunch. Mid-afternoon time for a snack before and/or after napping. Talks about dinner starting at 4:00. Dinners at 5:00 and he's in bed by 7. Honestly, I'm thankful he's asleep early but is up and down all night. Not exactly the golden years we dreamed of but the reality of dementia world. Does this sound famiar to any of you??? Sorry, just needed to vent and find out I'd this is normal for dementia world…that's an oxymoron. There's nothing normal about dementia life! Thanks for listening.

MobbyGirl

Retired teacher-

Your husband’s routine sounds exactly like my husband’s. He wakes, eats, spends a lot of time in the bathroom and sleeps. One day I thought this is like having an infant. He has other behaviors anxiety and frustration with communication, and cognitive confusion, but otherwise some really recognizable daily habits.

TXGram

It’s comforting in an odd way to know that this is a normal day for others. My husband is up and down during the night. Sometimes he sleeps late but usually he’s up early, spends hours getting washed and dressed and picking at his face and arms until they bleed, eats meals, and watches tv in his recliner. He wants to eat meals in his chair but I make him eat at the table so he gets some movement. The comment about an infant is true, he is my focus all day. It’s so good to hear that others are so similar.

Carl46

Eat, sleep, poop, repeat. Not my idea of golden years either, but that's how it is here in Dementia Land. They would be as well off in memory care, in most cases.

Bleach

my husband is up all night then sleeps all morning. Meals are a challenge because he just wants sugary snacks plus he is diabetic. He only sits in bedroom because the bathroom is there. He is usually incontinent and leaves such messes in bathroom. Everytime I may use it I have to bring cleaner in with me. He keeps asking for wine a hundred times a day but if he has any he is so aggressive and falls. I don’t get it because he never was a wine drinker. Bathing and hygiene is a battle. He thinks he can just throw his Gatorade bottles on the floor of the bedroom. I just don’t know what to do. He keeps wanting his truck and it breaks my heart to keep telling him he can’t drive. I am just so emotionally exhausted. I compare him to a 2 year old

TXGram

Bleach

Are you getting any outside help? Have you thought about Memory Care? This sounds like a lot for you to deal with.

SDianeL

it’s very common. He can’t follow what’s on TV anymore more but probably likes the noise. My DH liked old westerns. Some like music. Routine is comforting to someone with dementia. The world is too complicated for them. The more you can keep the routine the better for him. If you try to take him out of routine he may become anxious which could cause agitation. Try telling him you need to walk and you want him to go with you instead of telling him he must walk. Can you think of a reason to walk that he would like? Does he like birds? Squirrels? As he progresses he will probably want to do less and less.

Biggles

What a great laugh thanks Carl “eat, sleep, poop and repeat” Ho Ho love it! Definitely not my idea either of the golden years but so common in the dementia world. That is our life too except we got this little schnoodle puppy and it’s shaken up our world a bit. We’ve had to fit in a couple of new routines such as puppy exercising each afternoon which my DH adheres to. Really strange, however I’ll establish a new piece of routine wherever I can.

RetiredTeacher

https://alzconnected.org/discussion/comment/237205#Comment_237205

We try to get out most says to get him some exercise. He struggles with static standing, (postural instabiity?), and walking is difficult even with a walker. He actually does better pushing a shopping cart for quick grocery trips. He is still able to ride his ebike, some throttling and some pedaling. We try to get out every day if the weather is nice. We keep the routine the same every day and it helps keep him grounded and knowing what to expect. I am blown away when I think of the number of us caring for loved ones with dementia, going through very similar experiences every single day across America and world wide. If people aren't living it or haven't been through it, I don't think they can truly understand. TY my online friends for the helpful advice, unconditional support and feeling of community....it helps me stay sane. Prayers and hugs for all of you

rbhenckel

Hi. I am new and this is my first post. Probably doing this today as it was a horrible day for my DH. Maybe someone can relate and tell me what stage he is currently in. I am much younger than my DHA so I have chosen to take care of him. This is our day: he talks out loud ALL NIGHT LONG. Sleep for me is minimal. I try to stay in bed and rest as long as I can but get up and have some quiet time. He will sleep into the afternoon until I get him up. He seems rested then a day of hallucinations begin. He talks to invisible people. He hasn’t been able to focus, process, or track what is on tv. He also has macular degeneration and has lost his vision in one eye due to an eye bleed. The other eye isn’t great. He is able to dress if I have everything set out. There are bathroom accidents which bother me the most. Today was just a terrible day of nonstop confusion, talking out, fidgeting, even clapping which was new today. I’m sorry for being so long winded. I was hoping someone has a similar situation. He is on 2 medications of dementia, but haven’t seemed to help much. Thank you so much.

Carl46

https://alzconnected.org/discussion/comment/237572#Comment_237572

If he is hallucinating, he would probably benefit from an antipsychotic medication. I would tell his doctor what's going on ASAP. You can't take care of him in the long run if you can't sleep.

Timmyd

The ability of us humans to "normalize" what we are constantly surrounded by on a daily basis is truly impressive. What I would describe as a normal, or even somewhat decent day would be viewed by most people as something awful or horrendous.

The problem I have usually with "respite" is that having access and visibility to what I am missing just seems to make the situation worse. It seems easier to just stay focused on my normal rather than trying to have a foot in two different worlds.

RetiredTeacher

https://alzconnected.org/discussion/comment/237617#Comment_237617

I can relate to your comment about respite giving you an opportunity to see what you're missing and feeling like it makes your reality worse. The first time I got 3 hours to myself I didn't know what to do. My normally strong independent self didn't know what to do so I spent the time doing errands and buying groceries. I let myself dream of what I would want to do if I just considered myself. So many things came to mind that I'm no longer able to do with my spouse. It gave me something to look forward to, something to be happy about a d for a brief period of time I saw myself as an individual, not a caregiver who works 24/7 making my husband's life better. It is food for my soul and allows me to hang on to my sanity. Keep trying respite and dream of gun things to do just for you, even for a brief while.

DTSbuddy

RetiredTeacher Yup. You described our life!