My husband is 78 and diagnosed with mild cognitive Impairment/early dementia. Over the last three months he has become extremely lethagic. I try to plan activities but he doesn't have any interest in most. He only gets up to eat. Last night he slept on the couch; it is almost 6 in the afternoon and he has not moved. He has not bathed in 4 days or shaved in 2 weeks. He is on an antidepressant, his second one. I am feeling very frustrated and tearful...do not know how to handle this.
I have reviewed our options and choose to keep him at home as long I can physically keep him clean and fed. I have contacted assisted living facilities to get familiar with the costs and process, reviewed our finances with our accountant and started the process of making our home more handicap friendly. Also hired a home companion to check in on him when I am planning to be away more thsn 3 hours...can ramp that up as needed. It is a brutal thing to watch him decline. I totally get an earlier post from the woman who wants to run!!! But won't , it's not the stuff I am made of. This group is an awesome reservoir of hands on experience and I am grateful to have the opportunity to be a recipient of your collective experiences. May God bless all of us with copious amounts of strength, understanding, patience and and love.
"Loss of Initiative and Motivation
If apathy, loss of interest in social activities and hobbies, and social withdrawal occur in the early or mid-stage of AD, they may be due to depression.
About 40 percent of people with AD also have depression. Unfortunately, identifying depression can be difficult, and the cognitive impairment makes it difficult for the person to articulate his or her feelings.
If a family member sleeps all the time or watches TV all day and refuses to do any other activities, she may have depression as well, and you should talk to her doctor."
Note that last paragraph!
So, definitely bring this to a doctor's attention, preferably a specialist, not just a PC doc. You can start with PC, esp if you need referral, but you will more than likely be better off with a specialist. Sometimes it can take changing meds multiple times before the magic pill, if any, is found.
If at all possible, hire someone to come in to assist him with showering, at least once/week - if you can find the right person, they know many ways to get compliance (and sometimes those with dementia respond better to a non-family member.) This will take the task off your hands (and prevent you hurting or frustrating yourself trying to do this alone!) Medicare will pay for limited in home services so long as it involves personal care, so explore that option!
Also if possible, try to disturb his sleep/engage him in something fun or some interest he had in the past. Something that requires some physical activity is best, within their means of course. Lethargy can be made worse by sleeping too much. I find when I make a to-do list and get motivated I have way more energy than if I am just sitting around! The excess sleeping can feed into more sleeping (however there may be nothing in the end that can override this - at least try all the suggestions made by everyone!)
To shower takes MANY steps.
Undress, turn on the water, adjust the temperature, get in the shower, close the door or curtain, wet yourself, get a washcloth, wet it, soap it, wash, rinse, wet your hair, wash it, rinse it, turn off water, get out of shower, dry off......
And I am sure that I have missed a few, I don't have to think about what I do it is automatic. The problem with dementia is you don't remember the steps or you are afraid you will forget the steps or the order of them.
I have not shaved but I am sure there are as many steps, not to mention you may be doing it with a sharp implement.
Getting someone in 2 or 3 times a week to shower and shave him might be a good idea.
Everyday tasks become a challenge since you become afraid you will do them wrong. or worse someone will realize you did something wrong. (I think my Husband stopped talking for that very reason, he was pretty much non-verbal the last 4 years of his life.)
Advice for you..
Pick your battles. If he does not shave it is not a big deal. Showering is important but not every day, State of Illinois only requires showering or bathing 2 times a week in a facility. (I found that out when my Husband was in rehab, that was a shock to me)
See if you can get him into an Adult Day Program.
Do not try to do a lot all in one day. It can take a while for his brain to process what he is doing. He can become exhausted just taking a drive, he has to try to recall where he is, has he been there before, what is expected when he gets where he is going.....
Remember that even walking is a process for him, lift a foot, move it forward, set it down, lift the other foot, keep your balance.... So if he sleeps most of a day he probably needs it. Were you worried if an infant slept most of the day? Same process that an infant goes through processing is what your husband is doing.
Get to a GOOD support group. Your current friends will drop off and you will need a good support system, people that know what you are going through.
And when friends call and ask if they can do anything for you say .."YES" and if nothing else ask them to stop by and have a cup of coffee or tea with you. You will need the company.
Start thinking now about what your plans are. How much can you do physically and emotionally. Can you or will you place him in Memory Care? Can you keep him at home? Is your house set up for it? Is he a Veteran? If so there may be programs that will or can help you.
I liken it to how we feel when we are ill, we want sleep to try and recover. My husband’s body and brain were trying to figure out how to deal with his Lewy Body Dementia as it was shutting down his system. Sleep was it's best defense against itself.
My mom (93) and my husband (85) sleep all day. Both have dementia and both have well-prescribed meds that have made a big improvement (yes, this is an improvement over depression and nuttiness!).
It has been really hard to watch--especially in the case of my husband. A year ago, he was napping in the morning and afternoon. But over the last six months he has increased the time in bed to about 21 hours a day. He eats breakfast or lunch and goes straight back to bed. After dinner he watches TV for about two hours. That's it. He is just receding away from me. I do insist that he come with me to fitness M-F to ride a simple machine so that he does not lose all muscle tone. He does sometimes refuse--but wants to go and understands how important it is.
Having said this:
Wow, it is a relief to hear from others in this situation. That this happens to others. I am sorry this is happening to your husband so early in life!
And, what can we do? Nothing. Sure, have the meds reviewed but do not expect miracles from that. What we are experiencing seems to be situation normal for many with dementia. I have come to believe that they are choosing sleep/rest as an alternative to whatever is going on in their minds: noises, fog, confusion...all sorts of things. And also extreme fatigue. It is just easier to lay down and sleep/rest.
And, get ready for it: there is an upside to this. I know wives whose husbands have dementia and do NOT sleep all day. Instead they are up wandering around getting into things, getting into mischief, getting lost. Those wives cannot leave the house. I am grateful to have this situation over that one, and take advantage of it. I know when my husband will be immobile and use that time to go out! Go shopping for groceries (or clothes!), bank, post office, go out for coffee with friends, go to my women's meetings, etc.
Things could be worse.
As for the bathing, I have started hiring help for that. A big strong, young person comes twice a week and helps him to shower and shave. That way my husband cannot fall and knock us both down--which would truly be the end. It is working out very well.
So there you go. We are not alone! Hang in, look on the positive side of this, and many hugs!!!!!!!!!!!!!!!
I also paid primarily one special caregiver to plan activities for him. He was usually cooperative and involved.
I might also consider that when people stop doing normal things, they may have forgotten how to do them. My LO resisted making a sandwich, bathing, doing laundry, etc., but, she had forgotten how to do these things. Her brain just didn't allow her to. Planning, organizing and working through projects are skills that are lost with dementia. So, it may be something other than him just refusing to do things.
Sometimes it takes more than a few tries before the right anti-depressant is found. And there are other meds for dementia he could be on. Share with his doctor that you’re concerned about his extreme lethargy. There may be a physical reason.