Some days, do the symptoms seem so much worse than other days? Talk about this with our AARP Expert, Sarah Locke. Sarah is Senior Vice President for Policy and Brain Health in AARP’s Policy, Research and International. She leads policy initiatives on brain health and care for people living with dementia and is Executive Director of the Global Council on Brain Healt
Dear info Seeker: Good morning! Hope today is a good one for your spouse and you. Many people find the ups and downs of living with dementia so frustrating. But it can also provide hope because usually no matter how challenging yesterday was after you and your loved one get some sleep or get a nourishing meal and plenty of fluids things can settle back to relative normal. It also poses the possiblity that some days are better than others to talk with your loved one about something and try to get some communication from them that will help you understand what might be going on with them or what they wanted. And with caregiving being such a tough job, if you pick a day you and he both feel better to try something challenging - whether that is going to a doctor's appointment or having a necessary conversation about no longer writing checks or holding onto credit cards -- that can help both of you. I used to find days where my dad was having hallucinations the scariest. So I would make sure that I cancelled any appointments or anything that would change the routine until that would pass.
Definitely! For my Dad, who had Alzheimers, when he was tired ALL the symptoms were worse! His language, reasoning, judgement, mood and coordination were all much worse. Sometimes that was a signal that somethine else was going on - he had a cold or infection. Dad had congestive heart failure and as that got worse he was tired more often and all of his cognitive skills were affected.
The weather also affected Dad's skills - cold rainy weather affected his mood, probably pain levels (arthritis) and his ability to understand and reason.
Dad also had seizures as Alzheimer's increasingly affected his brain, and "seizure days" (as we called them) were always difficult. It took him hours to sleep and recover and usually was never quite himself until the next day.
And there were many times when he just wasn't have a very good day, for no apparent reason. I'm sure there was a reason, but it wasn't something we could easily discern.
Daddy passed on just 4 1/2 months ago, but right up until the end my sister and I knew from the time he woke up what kind of a day it was going to be. If he woke up smiling and talking more, and drank more water - it was going to be a good day. If he had a hard time waking up, was groggy, drank very little, it was likely going to be a more rough day. Regardless, we loved being with him no matter how rough it got. 🙂
Hi evelynw91551: Try making sure that your mom gets exposure to daylight during the day. Even if you live in cold weather climates, sitting by a window during the day can help maintain circadian rhythms to help sleep cycles. And see if you can find ways to get your mom to walk if she can or get some form of exercise. It's amazing how the simple things that help keep everyone healthy can make such a difference in the mood and behaviors of people living with dementia. Of course that is good advice for you as a caregiver as well. I totally agree with Amy that dehydration plays a big factor in outcomes! It is so easy for a person with dementia to become dehydrated because they often just forget or don't pay attention to their body's thirst signals. Having a cup of water with a straw and a lid nearby to sip on through out the day within easy reach can help. You may be shocked at how staying hydrated can make such a difference. Take care of yourself! Sarah
Hello Amy!! Thank you for posting your article, it was very helpful to me.. May I ask how long your dad had dementia before he passed? My spouse is having good days and bad days and sometimes the days are even half and half. He will be fine the first few hours and then totally lost the rest of the hours. Thank you!
@lb19994799 I'm not 100% sure when my Dad was officially "diagnosed" with Alzheimer's because he had talked with his doctor about his memory, and he had a doctor who had been doing the annual cognitive screening tests, so he caught the beginning changes very very early, when Dad was still quite independent and functioning full force. He started on medication to help the symptoms very early on. I would say the very first early signs started 12 - 15 years before he died. We asked him to stop driving about 9 years ago, so you see he was still doing quite well in the first few years.
The disease progressed very slowly for Daddy, and I did everything I could to support him in being as independent as possible for as long as possible. So he did things until he just couldn't - not just when they began to be difficult (i.e. dressing, eating etc.)
If you're experiencing the ups and downs, you may be dealing with sundown syndrome. Perhaps this column I wrote with tips to deal with it can be helpful to you. 10 Ways to Manage Sundown Syndrome. Even if the ups and downs happen at different times of day, you can still use the techniques I outline to ease anxieties and confusion any time!