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landlocked Asked November 2015

My husband has had increasing dementia for 2 years. He has frequently complained of extreme fatigue. Advice?

We have mentioned to doctor, who finds his blood work normal and prescribes multi-vitamins. He is also on anti-depressant. He sleeps some 10-12 hrs nightly, naps 2-3 hrs in afternoon, and may sleep in his chair in the a.m. But is "so tired." Is this typical of dementia patients?

Calysta Oct 2016
My dad has always done that for the past 4 years. He's been in the VA home 2 years. He sometimes sundowns so badly that he's up most of the night but the VA stuff get him back on schedule quickly. My mother was still alive two of those years fighting her own battle with Alzheimer's, which affected my Dad. I think it's common for dementia patients to be lethargic at times and manic at others.

mshowdy2 Oct 2016
Husband has vascular dementia, is 78, sleeps a lot at night, not during day. He's on Namenda, Citalopram, Aricept, Metformin, and a few other prescribed meds, as well as vitamins & baby aspirin daily. Dr. tells me my loving husband's has to work harder due to the dementia, and I am seeing cognitive failure every day. Husband had MOH's surgery last week; 3 incisions in one day, 1 in forehead & 1 behind each ear. I know that took a lot out of him & he doesn't want me to treat the wounds, but I can do it once a day & I am grateful and an happy I can do that for him. My husband is and will always be my one true love......he is worth every moment I can have with him. I do tend to lose my patience, but then I say a prayer to give me the strength to take care of him. We live in an independent apartment; I am 69 & we have been married 47-1/2 yrs........each day is a blessing.......my husband is still in there......I know it...........We Caregivers need prayers & patience.....these are our loved ones.....MsHowdy2 is my nickname, if you care to read my comments.....

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Sunnygirl1 Dec 2015
It could be caused by many things. Have you noticed if he has shallow breathing when sleeping or does he snore? Sometimes people with sleep apnea will always be tired and sleepy, because they don't get full rest to due lack of oxygen. Cpap is the treatment, and I don't know how that would work with a dementia patient. I would imagine it would be difficult to explain what it is and why they need it. Still, it could answer why he's so exhausted, if that is the problem.

roseofsharon Dec 2015
Wow I wish my mother who has dementia/alzheimer age 85 would sleep, she was diagnosed in March 2015, she is up all the time and never sleeps, even the night time pills she takes I have to crush them in order for her to even get them into her stomach, she is very argumenitive. She is in denial about the diagnose and thinks everyone else is crazy. She may take a nap for 5 min off and on but never laying down, all night. I try to go to bed about midnight and if I have to go to the rest room during the night 2 she is up 4 she is up and she starts calling people about 7AM if they will answer. My prayers go out to you good luck with your Dad, we will make it.

IamAmy Nov 2015
You said it Normandy!

IamAmy Nov 2015
I hear ya, my youngest son burned down our house when he was barely two yrs old. This was before they had the sense to put a safety feature on those long BBQ lighters. I guess they thought I'd have the sense to keep it out of reach, yeah right, they didn't know me and they didn't know him. My oldest son got a hold of my car keys, put the car in neutral and rolled down the hill into the lake when he was 3 yrs. My daughter got out of her car seat at 18 mo. and shifted my idling car into drive while I was inside the ATM and mowed down a sign before coming to a stop with the help of a nearby parked car. Lord'amercy I wanted to run away more than once or at least be sent to my room for a week.

normandy Nov 2015
Beautiful exchange with implied humor. Shows with all the strife of kids, caregiving and everything else we are all human and enjoy hidden meanings with a laugh.

Terry512 Nov 2015
IamAmy, glad I could help! Sometimes I hit "post" and then read what I've typed and some of my comments read like I've had a glass or two of wine while typing. Also, that could have been a Freudian slip too. Having my first 4 children in 32 months (no BC back then) made me think about "staying away" more than once! lol But we all survived and I even had #5 10 years later. I could write a book on what kids do and say. One lesson I learned was never say "my kids would never do something like that". Because they either did or were thinking about it.

IamAmy Nov 2015
Terry, your typo gave me the giggles. "I stayed 'away' after that" hahaaa! I knew immediately it was a typo but appreciate the moment of laughter.

IamAmy Nov 2015
On the flip side my dad doesn't sleep enough. No naps, goes to bed at 9:00 pm and gets up to pace at 10:00 pm, back to bed at 11:00 pm and up for the day at 6:00 am. I'm thankful and yet I wish he would at least take a nap and yes that nap would benefit me too. :-)

Terry512 Nov 2015
I meant I stayed awake not away. typing too fast.

Terry512 Nov 2015
DonRita, it sounds like you have developed a routine fit for your spouse and it works for you. Great job! When he sleeps, you have time to do what you want to do, sew, crossword puzzles, run errands. At least you have time away from the caring duties that is so time consuming. I think everyone with a person to care for should read your comments and develop their routine like you did. Think back to when your kids were barely 1 or 2. The sooner you got them on a scheduled routine, the better and easier it was for you to plan your day; showers, meals, etc. I used the sleep times to do housework. I tried napping once when they slept and they (4) woke up early (they were 2,3,5,5) and they decided to set fire to one of the bedrooms. I awoke to smoke and quickly put it out. I stayed away after that. My point is things happen quickly when you nap so stay awake and do the things you need to do, like laundry, ironing, etc. Something has to give. Some women think they are wonder woman but in reality, they just work quicker than others. If anyone is frustrated and never get things done, it just might be that no routine or schedule is in place. If at all possible, get them on your schedule and not the other way around. Kudos to you for making his day worth while, DonRita.

lbrown Nov 2015
My mom sleeps more now. She doesn't say she is tired so much until bedtime. However, I feel the main reason she sleeps more is that her mind has her constantly doing things. She "works" all the time and thinks she goes places. She talks to people and shows them what she is making, and orders the workers around some. So by the end of the day she probably is tired mentally doing all this. At night she sometimes does the same thing in her sleep. Might be just a while or all night. After a couple of days of this she is asleep in her chair most of the day and sleeps through the night without incident. She is wheelchair bound and too afraid of standing/walking even with help. But like I said, in her chair during the day, and in her sleep she is on her feet and working constantly.

normandy Nov 2015
In all of our discussions here in the USA on all medical ills facing our communities we have a missing link. This blog should be tied to Medicare so participant's can reach the powers in that organization learn and understand the many problems that we all face when it comes to their inflexible regulations relating to preventive medicine. They accept the doctors initial diagnosis and limit what that practitioner and nursing home can provide and receive reimbursement. Entitlement seems to be a bad word but it implies that we as citizens deserve to be spared the path to death if other disciplines can correct illness that compound those incurables we are discussing. Until the researchers are successful with the dementias and reversal of brain deterioration they must appreciate the challenge. The medical profession is sitting on their hands in this fight.

normandy Nov 2015
It is typical but requires further review by an interdisciplinary medical team made up of many doctor specialists. This is a program that Medicare needs to approve .I go back again to the subject of polypharmacy and a team would all be aware of each others prescriptions and phase out counter medications that might be the problem.

skyslimit Nov 2015
My mom has Vascular dementia and also has extreme fatigue. Hers is due to heart disease (Aortic Valve Stenosis.) There are four issues that come to mind which could cause tiredness (1) depression, (2) UTI, (3) thyroid problems, and/or (4) medication side effects. And, of course, it could be any number of health issues that haven't yet been diagnosed. Between your husbands primary Dr and his Neurologist, they will hopefully figure out what's wrong.

Llamalover47 Nov 2015
Many different can make him lethargic.

DonRita Nov 2015
His sleeping so much is also one of my concerns.
I keep the room at night cool and dark.
Now I open up the curtains, shut off the fan and put on the TV or music and let him decide when to get up Some days he sleeps until 3 and others days he gets up at 12 or 1. We go out in the evenings. I try to have him dance twice a week minimum. I now try to get him to walk. I try exercise at home. Sometimes it works sometimes it does not. I found a program where I can get his fitness assessed and few tips on exercise. I hope that helps. He is 83. Was diagnosed 6 ears ago but changes were noticed 10 years ago.I think it depends on the days, the weather and the activities of the day. Some days I can attribute it to boredom, depression, discouragement, confusion and just being tired. I take it one day at a time, check to see if there are infections or other issues and then go with the flow. We just finished two days of constant sleeping and now he is up and at 'em and ready to go. I will take my cues from him for a while and see how it goes.
I use the morning time when he sleeps to go out and exercise and go out and do errands. I leave a big note and make sure I am back within 2 hours. He now sees it as routine.

Terry512 Nov 2015
Personally, with a person gets in their 90's, I think all their sleeping is they are just tired of living. Most of their friends have died off, most of the family members are gone and they are in a nursing home just waiting... They get depressed because they used to be so busy and moving around and now, the only movement they have is adjusting in their wheelchair. Take them outside in the fresh air and at first they may not like it but later, in their room, they will feel better for being outside in the sun. The sun does wonders for the body and soul and it doesn't take but a half hour out there. Give them extra vitamin D, enough pain med to get by for a few hours and sit out there with them and talk to them. Bring up past get-togethers that were fun and full of laughter. Bring pets to see them and maybe even babies. They are usually left out of everyday life and they are just waiting to die. Don't let them get to that point. My dad lived with me until he was 80. Every day we sat and talked even though I didn't always see his point, I knew he felt like talking about things 50-60 years ago. We would go out to eat even though it was a little hard for him to walk but we went. we stayed in the land of the living is what I'm trying to say. I would take him to toe mall and sit him in the middle on the benches while I went from store to store and I moved him bench to bench but he was always ready to go. Once they get in the nursing home, everyone is so busy with chores, they let them stay in the wheelchairs for hours on end and rarely talked to them about anything other than what they need to do. Think about what you would want someone to do if you were the patient in the NH sitting and waiting...

mlface Nov 2015
My 85 yr husband W dementia can sleep till 3 or 4pm getting up to potty & try to get a meal in there. He reluctantly gets up when we must go somewhere & will stay awake. As soon as it is near dark he wants to go to bed but not w/o me. He is great W 100 pc puzzles so when he's up I keep one out so he may do 5 a nite. I prolong bed at least until 8 then turn bdrm TV on hgtv or cooking & he may watch or go to sleep. He is on aricept & anti depressent. I stay calm he stays calm & makes life happy where we are. The doc sees nothing wrong W his sleep so better than being bored. His exercise is walking from car to store & he gets worn out. We know what's at the end so make him happy at what he likes including sweets & sleeping.

normandy Nov 2015
When reason diminishes patients only respond to the person who feeds them identity fades. It is difficult for loved ones to see how the patient is breaking down. Other than keeping the patient medicated until necessary is some relief for the caregiver but signals what we expect. We caregivers must continue our role no matter what the difficulties are presented. A minute extra in life without pain is a lifetime. I feel guilty when I reflect on the times I lost my patience. I know I regret every minute now that she is gone when I lost my temper this is a stain I live with. I know better now how this illness works.

megan2014 Nov 2015
My mom is almost 91 and sleeps alot..She is awake to eat and then naps. She is in AL and when we visit her she usually falls asleep. She rarely gets visitors. She is in her own little world. Sits in a w/c all day aside from naps. Its all part of alzheimers. She was diagnosed 5 plus years ago..So sad....

ferris1 Nov 2015
There is nothing "typical" about dementia persons who are unique, but the anti-depressant would be suspect to me and thyroid levels can be checked by an endocrinologist. There is some dispute about what level one should have for hypothyroidism in order to take Synthroid medication. He needs to be stimulated every day so he is not sleeping that much, so get him up and exercising physically and mentally. My husband does word problems and reads history books. Do what he still likes...

Hope72 Nov 2015
I know it's difficult to watch your loved one go down hill, but dementia is a robber of any quality of life! I've heard it said that dementia is like a book, every day you tear a page out till there are gone! My mom is terrible mean, an now has a short window of any niceness to me. She still has times that she can be very nice to my siblings, that visit on occasion! She thinks l'm her maid, an her family pays me well! Mom does dothing any more but set, eat, sleep! She gets very angry with me if l ask anything of her. So sad, not any quality of life here.

lealonnie1 Nov 2015
Polypharmacy refers to the effects of taking multiple medications concurrently to manage coexisting health problems, such as diabetes and hypertension. Too often, polypharmacy becomes problematic, such as when patients are prescribed too many medications by multiple healthcare providers working independently of each other. Also, drug interactions can occur if no single healthcare provider knows the patient's complete medication picture.

normandy Nov 2015
Sorry it has recently entered into the vocabulary. It means spacing the intake of medicine at intervals and not take them in one gulp at the same time. This avoids interactions and is worth trying.

Cheyenne93 Nov 2015
Polypharmacy? What's that?

normandy Nov 2015
Try earphones with light music during the day, get him to hum, feed the patient small bites more frequently, engage in conversation, seek visitors especially old friends. The boredom of exclusion is evident the patient needs a pinch of life and be certain to practice polypharmacy.

Cheyenne93 Nov 2015
Hubby is 92. I think he sleeps some days is because of 3 reasons 1) he's up 3 and 4 times a night to use the bathroom; 2) when he's bored (like at a Church service; and 3) his body is starting to shut down. Blood tests and meds are ok. Get them checked once every 3 months. He's always awake when the caregiver is here on Wed and Fri mornings. He talks a lot about his past; and, bless her heart, she listens to the same stories again and again. He really enjoys reading past war books of plans he used to work on during WW 2. Yes, he can stay home from the service; but he really does like to go because he sees his friends and goes out to breakfast with them after Church.

lealonnie1 Nov 2015
Globetrotter: You sound like me. I call myself The Google Doctor. For years I've been trying to diagnose my father (now passed) and my mother because their doctors are pretty useless, except for writing prescriptions. Know what I discovered? That Google-doctoring is a huge mental stress and gets me nowhere. My dad had a meningioma on his right frontal lobe, and IT wound up killing him this past June. He became SO weak on the entire left side of his body, that he fell & broke a hip, and then wound up falling 11x during the ensuing 10 months he remained alive. With all of these health issues, it's impossible to figure out what's causing what, and what to do about it. Palliative care wound up being THE best treatment for Dad, and physical therapy (which gave him Hope that he'd get out of the wheelchair one day, which he did not).

My mother has about 10 health issues with 'vertigo' being the newest and most confusing/troubling of all. She fell last Sunday, I took her to the ER (she lives in an ALF), and the doc said ALL her tests were 'normal' and that she's fine. Meanwhile, she wobbles & teeters around, losing her balance and 'almost' falling continuously. The treatment for vertigo is Valium, which exacerbates the wobbling & teetering BIG time. So I've decided to stop playing Google Doctor, put Mom on the medication administering program at the ALF, and put the rest in God's hands.

Wishing you the very best of luck with your Mom, my friend.

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