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I’ve noticed something and I’m curious whether others have seen this in their loved ones as well. When my husband is tired his symptoms seem to get worse.
For instance we had a wonderful Thanksgiving at my daughters yesterday with 13 people who were just family or in-laws. My husband had such a good time and my grandson, who travelled in from New York found that there wasn’t much change since he saw him last. We met up with him again today, before he left, at Starbucks. My husband was repeating himself constantly, confabulating and getting all his time lines wrong. My grandson told my daughter later that today he noticed a big difference. I think that perhaps being social and out 2 days in a row was too tiring. Anyone notice this or have an opinion?
Thanks !

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In my general experience it is anxiety and social pressure that can exhaust and tax a patient with dementia, esp early to mid stages. They try so hard to stay in the "normal" realm, and it is quite taxing. I can well imagine that the input of that many people would be overwhelming. I myself barely survived 14 and four dogs yesterday. Fun, but barely survived.
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Somethingelsa Nov 2019
You’re probably right but he was so happy on the way home and even said it was great that it was all close family and that he knew and loved everyone and could be himself . He was so aware . I think I just pushed it and should have quit while we were ahead instead of agreeing to another visit with our grandson . I also think he’s so much more comfortable in one of my daughters homes than out in a store or restaurant . Well another lesson learned . Thanks so much for responding .
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Yes, that is my step mother too. One day out seems to be her max.
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Somethingelsa Nov 2019
Yup I’m learning that . He himself knew he was having a great time thanksgiving so my lesson is just that . One day out and then we rest !
Thanks.
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My Dad does not have dementia. He is 90.

He can only manage 2-3 activities per week, beyond that he is physically and mentally exhausted.

It could be that your husband managed to showtime during TG dinner, but today is far too exhausted to make an effort?
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Somethingelsa Nov 2019
Could be but he really just sat back and we could see the pleasure he was getting seeing our 4 young adult grandchildren being together and interacting . He himself , on the way home , kept saying how much he enjoyed . I guess my mistake was not realizing it took so much out of him . I was just so happy to see his enjoyment that I didn’t use good judgement . He is not so great anymore in outside environments that’s not ours or a loved ones home so I need to be more aware.
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I think anything that's bothering a person whether they have dementia or not gets worse when you're tired. I know I can be having a great day one day and then get no sleep and feel like absolute sh*t the next day.

So it stands to reason that a person suffering with a debilitating illness would feel that even more.
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Somethingelsa Nov 2019
Yes thank you . You’re so right !
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My mother constantly said that she just didn’t have energy to do much. She didn’t. I think it depends on the person, their health, age and so forth.

One doctor appointment wore her out! That was the extent of her outings. Nowhere but the doctor’s appointments. One day, she even asked the doctor, “What will I do when I can’t make it to your office?” The doctor said, “Then someone will go to you.” I suppose hospice.
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My DH does not have dementia (as far as we know), but he does have cognitive deficits from his 2011 stroke and end-stage renal disease.

Fatigue messes us ALL up, but I can usually slap myself together IF I must. He cannot. He needs rest before he can make any sense at all. Plus, so many things cause him extreme fatigue.

We cannot clump activities together over consecutive days, let alone hours.
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Somethingelsa Nov 2019
Yes I believe I’ve learned my lesson .
thank you .
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Yes. To much stimulation makes things worse whether it’s people noise lights outdoors. Less is best where dementia is concerned. As time goes on even too much “stuff” around him will be too much
calm and quiet will be the key
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Somethingelsa Nov 2019
Yes . Obviously one day was plenty and enjoyable for him . Two outings , too much .
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Oh, absolutely correct. As others have pointed out - this type of “on the go” activity can be draining on folks without dementia but of a certain age or less than ideal physical condition.

My father was sharp as a tact up until his last few weeks - and I attribute that decline to the traditional hospice cocktail. No accusation or complaint - it was what it took to keep his breathing a bit easier due to advanced CHF.

Anyhoo- in his last year, one day of beyond the typical around the apartment activity equaled the next day usually bed bound and sleeping quite a bit.

It took a while for my father to accept this new inactivity- well, “accept” is probably too strong a word - but he did learn to dial things back and to pace himself better. Or pay the consequences.

With dementia, as long as you’re your husbands caregiver- you’ll
need to make this decision and activity adjustments for him.

Best wishes to you.
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Somethingelsa Nov 2019
Yes you are right about that . It is an on the job learning experience tho as each day brings something new . Luckily at this point, slight changes but just as I adjust to one thing here comes another one . Thank goodness for all the new delivery options as this wonderful man who loved to grocery shop ( and I loved to let him ) finds just going to a store overwhelming. Thank you so much for your response.
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I would agree that there is a difference when one is exhausted.
I even notice it in myself.
When we are tired and not able to focus we make all sorts of errors. So it is not just something that happens if you have dementia it happens to everyone. It just may be more noticeable and "we" tend to look for mistakes or errors of judgement when we know someone has dementia if for no other reason to validate what we really want to deny is occurring.
For a person with dementia it might take all their concentration to make things seem "normal" for a few hours and that is even more exhausting for them so errors may seem even more exaggerated.
This also might be a clue that for Christmas and other holidays in the future you might want to cut back on what your husband gets involved with and with a smaller group of people. For example instead of 13 people all at once maybe a few can visit over the course of a few days keeping the number of people smaller. For example an Open House from 4 pm to 7 pm and family can come and go have a bit of a buffet set up and keep it casual. This way if you notice your husband is getting tired or agitated you can settle him in another room so he can watch TV and relax. Or if you have a caregiver that comes regularly they could be there so they could help calm him and maybe even take him for a quiet walk.
I know everyone wants to gather with the entire family at some point but maybe now that is not the best for your husband.
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Yes, this is quite common, especially among those with dementia. Dr Ranan Chatterjee has pointed out in "The 4 Pillar Plan: How to Relax, Eat, Move, Sleep: Your Way to a Longer, Healthier Life" that: “It’s thought that, when we sleep, our brain cells shrink in size to allow gaps to open up between our nerve cells which allows our brain to wash away waste products that build up and accumulate whilst awake. To give one example, researchers believe that sleep is the time when we clear out the protein beta-amyloid, which accumulates in the brains of Alzheimer’s patients. Sleep also helps us lay down new memories by promoting the growth of new nerve cells” (p. 205). 

I have certainly found this to be true with my wife, eight years into Alzheimer's and confined to bed. She regularly sleeps 13 hours a night and then has morning and afternoon naps, so she is sleeping some 16 to 18 hours out of 24. However, she still relates well to me and all her carers (who have become close friends) and can joke and initiate conversations. Of course, at times she becomes upset, but sleep is essential to face life with courage.

May you be blessed . . . and not too concerned by the ups and downs of looking after a loved one with dementia.
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Somethingelsa Dec 2019
Thank you for that lovely response . Your last sentence in particular , read with my morning coffee ( while my dear husband sleeps ) helped start my day off beautifully .
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Same here with my mom. Her memory issues worsen, she can't converse well, etc. after a "busy" day or being over-stimulated socially. She loves the "busy-ness" and attention, but the after-effects are hard on her. But the results outweigh the experience she has doing fun things at this stage in her life, so we just deal with it.
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Yes. I made a point while caregiving for mom and dad, that they had a day or two of rest between outings or special events. Wasn't bad for me either!:)
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Somethingelsa Dec 2019
I now know to do the same . Learning daily !
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Dementia symptoms very likely get worse when the person is tired. Confusion and attention get worse-when-tired even for people without Dementia.
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dogperson Dec 2019
That's so true. I don't have dementia yet (at least I don't think so) but in my experience everything is worse when I'm tired.
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My Mom is 100 and is just having signs of dementia now. Not only when she is tired do her symptoms get worse, but she doesn't eat a lot and I've just discovered that they get a lot worse when she is hungry too. She will say she is not hungry but I keep her meals and snacks on a schedule and she still eats and her symptoms subside when she does.
All the best to all my fellow caregivers. Hardest job in the world. Appreciate the support here. Sometimes we feel we are very alone and hearing that others face the same things really does help. Have a good day everyone! Hugs.
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yes, I have noticed the same. He is usually pretty good when all is here but a day or two after he is a real stinker.
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Yes, I think a person, especially one with dementia, is going to be not right in their thought processes when tired. That includes verbalizations.
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Yes, absolutely. I know my husband’s tired when he stops making sense and he usually gets a little snarky, too. Weird questions, slurred words and a stinky attitude.. with a stink eye thrown in for good measure.
Sleep and rest are important, yet he can’t regulate himself. I walk him to his chair, he protests, then sleeps an hour.
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