He is lucky to eat 1,200 calories a day! He also sleeps a considerable part of the day and is awake a lot at night. He uses a walker and I sleep in the same room so I can hear when he is up, needs help in the bath room, etc. I don't get much sleep. To add to this he will talk and joke with others, but rarely speaks to me. I try and encourage him to talk to me, he will often only grunt or gesture to me! I am trying to get some respite for myself. I will see our elder care lawyer in May, as we don't qualify for Medicaid and I'm getting burnt out and becoming short with him more often!
I would recommend giving him whatever he likes most and caloric (splurge on ice cream shakes instead of Ensure). Praise him when he takes a bite.
Do whatever you can to get him moving and enjoying life - play his favorite movies and music, take him out for stimulation, etc.
Make the most of every moment. Love him. Praise him. Don’t scold him for any reason.
He was complaining of weakness, and his b/p and pulse was spiking.
He has a touch of OCD and anxiety. You can actually use that for your loved one, on his behalf.
I learned over time, that if I cooked eggs, and he initially said no, he would want the eggs after I was done cooking mine. So I cooked enough for him. He ate.
Not wanting to waste food, I would leave 1/2 sandwich on my plate, and ask him to put it away for me in the fridge. He ate.
I left food out. He ate while putting it away. Often, there was none left to put away.
He has never refused a smoothie, so if I make it and put it in his favorite cup with a straw, he drinks it.
If he is expected to arrive home, and should be hungry, I put his food on a dish with a lid, and disappear. This prevents the long wait of prepping together, waiting to eat. He eats.
Meantime, I am on a break in the back, eating my lunch in peace.
His weight has stopped dropping, and his doctor declared him physically fit
this month.
I found that asking does not work with my guy. Leaving food for him to serve himself does not work. There are work-arounds. But I need to be aware.
I tried it and it worked.
I know you said he uses a walker. Just going outside for a bit…but you’d have to “time” this exercise for when he starts getting sleepy in the day. Fresh air and whatever exercise he will do. Probably dont make it seem like “exercise time”. That may not go over, but say let’s go outside and walk in the yard/driveway/front of the house and get some air. Or would you be able to take him on short errands (again right before is normal nap times)?
If he is willing to do exercise, there are many free youtube videos for seniors and those in walkers. Try for times of days he’s napping. Does he have any interest in gardening…again he may not be able to do a lot, but any movement outside would help. Do you have a dog? Throwing the ball for the dog would work too.
As for eating better, consult with your Dr or even get an hour consult with a geriatric nutritionist to get some ideas. Try smoothies with protein powder…but they need to taste good too, so it may be trial and error for you.
Not communicating with you is very frustrating…when you can find some help to come in, have the caregiver make the suggestions to him if he’ll accept that better. Sadly, eventually he will resist his caregivers too.
Medicare does pay for some hospice help and hospice isn’t for the very last stages like it used to be, look into it. Also look into community resources, li’e local adult daycare, church groups, organizations that have volunteers to sit with seniors or take them on outings…they are out there (depending on where you live) but you’ve got to look for them.
Also, for yourself, join some caregiving support groups. There are many, even online. They will give you lots of ideas on handling the many issues that crop up.
Good luck and keep us posted.
The grunting and gesturing to you while being lively and talkative with anyone besides you is very common.
This is what my mother has done for many years. The only communication she is capable of with me is grunting, complaining, belitting, and gaslighting. When she's around others it's very different, but she villifies me to whoever she's talking so sweetly to.
Someome on this forum described this behavior as having "company" manners. They will showtime and be sweet as pie when there's "company". The "company" can even be a hired caregiver and your husband will put on the show. The second they leave, it's back to the grunting and gesturing to you.
You should not be taking care of your husband anymore. I know how miserable the existence is to have to be the sole caregiver to a person like this.
Put him in adult daycare. It will cost, but it's worth it. Then hire homecare help. Hire them for the overnights instead of days.
You move to a different bedroom where you won't be disturbed at night and let the aide deal with him being up and down.
Or drug him at night so he doesn't get up. The doctor can prescribe something you can put in his drink or night time snack. You don't even have to tell him he's being drugged.
It's a good idea that you're seeing an elder lawyer. They can advise you.
But really, even if you have to pay for his care and there's no potential inheritance to leave anyone after you're gone, so what.
Your life now is more important than what you may leave to future potential heirs.
You need a break from your husband. Even if it's a place him in care break.
So take one and pay for it. It will be money well spent.
Also be sure to inform his PCP
( PHYSICIAN) regularly ( frequently) about these observed behaviors and, patterns of eating and sleeping. As for eating, let him decide what he wants ( pt rights to choose) and, as long as you are offering nutrition, let it be. Depending on his illness and limited activity he will require less and as well our taste buds and metabolism changes with age/ as well, you do not state a diagnosed illness he has, but of course certain illnesses may affect both eating habits, sleep patterns , and social behaviors/ emotions.
You, my dear are close if not there to " caregiver exhaustion". See your own physician also and be sure they know the status at home.
Reminder: I'll loved ones often treat their " primary caregiver" ( usually a family member,you in this case) with rudeness, anger, disrespect, lashing out etc while presenting a very different behavior with " others". This is caused by many different reasons. If your husband is mentally intact and therefore cognitively able to comprehend, try talking with him about how you feel.
It may or honestly may not make any difference.
He may need physician assessment for " level of care needs" which will contribute towards your decisions for possible placement of him into facility care.
Get help !
If he ever presents unsafe toward himself or you, call 911 immediately.
Sometimes if dementia illnesses are involved , violence or rage can erupt quickly...
If you feel, unsafe, call 911, have him transported to ER.
For respite I would take him to a facility for a few days at a time, do what you want during that time, enjoy you, you are entitled to have a life as well.
Sometimes we caregivers get too wound up in caring for our LO's we forget that in order to continue, we need to be at the top of our game, mentally & physically.
Unfortunately, there have been many incidents where the caregiver dies before the patient,
I hope that you have a backup plan in place if something happens to you.
Sending support your way,
It is not shared what his diagnosis or age is so I cannot comment on more.
My mom swore by her bedtime melatonin & tylenol per doctor.
If he is awake more during the day he will be consuming more calories. Try to supplement small meals with protein shakes or add a protein powder to his foods/drinks.
Good luck & can you find some part time help? Can husband do some things for himself?
I don't know how agreeable your husband is, - you say he is dismissive of you - but this is what I have done with my mother and it's made things much better.
(The only "meds" my mother takes is a thyroid pill, Milk of Magnesia for bowel movements, and a CBD gummy for calm.)
My mother was doing the 24-hour up-and-down routine, basically setting the schedule that I just went along with, because I thought well....she has dementia so this is how it is. Wrong. It came down to what is best for BOTH of us - for her to have the best care and for me to survive.
If my mother isn't already up for the day by 11 am, I get her up. If she doesn't want to get up too bad - it's time. This a dictatorship, not a democracy.
Then we go to the kitchen where she stays until bedtime around 6/6:30 pm when I've had enough.
During this time in the kitchen, she eats and drinks thereby getting enough calories and water. I fix her what she likes - toast, bacon, apple slices, ice cream, bananas, sandwiches, chips. It's pretty much the same thing every day but she eats quite a bit. I also hand her the water bottle during the day and she'll take a drink.
Being up also keeps her lungs clear.
During those afternoon hours when she is up, I have the sitter come in for a couple of hours so I can get out and run errands or cut the grass or just take a walk.
When she says she wants to go to bed, I tell her that we will go to bed at bedtime and it's not bedtime yet.
Before bed I give her one CBD gummy (no THC).
She will typically sleep until 4 or 5 am. If she does get up, it's only one time until morning when she will begin a waking cycle.
Maybe something here will give you some ideas about how to get a routine established with you and your husband so you can have a better living situation and get some sleep.
Peace.
the person declining knows very well they are, and I experienced both mr and mrs riding the roller coaster of acceptance. It’s hard. Really hard for the caregivers.
get some help. You’ll get some sleep and some one to share the burden and talk to. You need it.
just remember to lock up all sentimental and valuables and get nanny cams. It goes with the territory. God bless
Often, people take for granted the person who is caring for them. Find others to engage in a conversation with. Talk to us. We will listen. Phone a friend to talk.
My mother barely ate. I did start serving her food on small plates because she would complain that she couldn’t eat a lot in one sitting. Try that. I also made her smoothies. She liked those. Older people start losing their appetite. Mom was tiny!
I really hope that you can find some relief soon. Take care.