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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!

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Good ideas here. My husband always says he isn’t hungry but I do put some food in his lap and he does eat it. It’s like having a toddler! They also don’t want this one day and love it the next. For toddlers it is recommended that you leave nourishing snacks around eg peanut butter crackers/cheese cubes. And ice cream works wonders. On this site someone recommended Benecalorie to put in food to increase calories. I found wonderful help in my local senior center where they play music, have lunch, have pizza and bingo,outings and parties. My husband does talk to others there. If you have such a thing in your community he might do well to go and tire himself out and stay awake during the day. By the way, does he go out at all? Fresh air helps a great deal.A little NyQuil cough medicine works for sleep or a few drops of liquid melatonin given near bedtime. Good luck!
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These are both tough problems.

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.
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Bonnets42: It is imperative that you do seek respite, else you cannot care for someone else albeit your own DH (Dear Husband). Seek a nutritionist for him.
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My dH was still losing weight a year after he stopped bike riding 50 + miles.
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.
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Nothing you can do. Just keep feeding him. Ask what he likes. Ensure is good. I let my wife sleep at least she is not in pain. I can’t imagine personally what it is like to see your body deteriorate and know the end is near.
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My mom's doctor prescribed mirtazapine to help her sleep at night, it worked for her and also seemed to give her more clarity during the day. The increased appetite side effect was a nice bonus.
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Sendhelp May 2023
aka in the U.S. called Remeron, an antideppressant.
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Try to copy and paste. This URL is crazy. https://www.aplaceformom.com/lp/respite-care?kw=3234-prospecting_nb_respitegeo_null_apfm&kwg=R:SPT:NY:New%20York:Respite_Care&keyword=respite%20care%20ny&match=p&device=c&network=g&account=G:US:NB:APFM_Master_New&campaignid=10752956097&adgroupid=106454174312&ad_id=638308534218&AdPosition=&geo=9033425&distrib=s&targetID=kwd-389904274038&interest=&hl=Respite-Care%7CRespite%20Care&location=SPT%7CNY%7CNew%20York&utm_source=google&utm_medium=paid_media_sem&utm_campaign=prospecting_nb_respitegeo_null_apfm&utm_content=&utm_term=respite%20care%20ny&attribution_id=155&&&gclid=Cj0KCQjw0tKiBhC6ARIsAAOXutn9IZQF-xuHzMT-j1TS3R9sPQkLO9jmIB4RsXHGKuyHZHU0mvsEXqYaAp6BEALw_wcB&gclsrc=aw.ds

I tried it and it worked.
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Bonnets42 May 2023
Never got it to work on my Mac!
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I haven’t had experience with this (yet), so I’m just throwing out some ideas.

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.
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Bonnets42 May 2023
Have several care giving groups on the computer! Didn't go with Hospice as they told me he wud have to drop immune therapy he is doing for bladder cancer.
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Dear Bonnets, my husband has had Parkinson's for more than 25 years and his frequent nighttime bathroom trips and flailing while asleep made it impossible for me to get a good night's rest. Getting good quality sleep was critical for me to be a good caregiver during the day. And so I moved him to another bedroom. At first, it was more difficult for me than for him. I worried about him falling. However, if you can obtain home health services for PT and OT therapy, they can assess the safety of your hubby's environment and can recommend any aids that the doctor can order via Medicare. In our case, I set up my hubby's bedroom with everything he needed to be safe. My husband once could go to the bathroom alone during the night. No more. Now his set up includes portable urinals beside his bed. He has a bell, an alert system, his cell phone, and even a whistle. Eventually Medicare approved a hospital bed, which helped him with his medical conditions. With the support of a speech therapist, my hubby was also given speech exercises. Do something together that you can discuss as a couple such as watching favorite TV shows or movies (not political talk shows). If you can find a program that's part of a series, this can be something that you enjoy together - even if you're not doing much talking. As for caloric intake, get his doctor to give you a referral to a registered dietician. You can have video visits if getting out is difficult. There are many high calorie liquid foods that can be added to his daily diet, like a frozen milkshake. In larger cities, there are adult daycare programs where you might want to take him for a much needed respite. OR, if there are any close relatives nearby, such as grown children, you can ask them to take over for a few hours while you have some time for yourself. Don't give up. There are many of us who have been in your shoes. I wish I could say that it gets better, but it does not. However, you can arm yourself with many coping strategies and resources that can lighten your burdens. You are not alone!
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Bonnets42 May 2023
Only his daughter who works full time1 I give him Boost High Calorie, with his breakfast and Glucerna with lunch and dinner. Just sent a message to his diabetid Dr asking if iii cud give him Boost high calorie, with lunch and dinner too, since he eats so little.We watch Dr Pol and last man standing together. Found a registered dietician on the computer that will help. If I ask why he didn't eat something says I don't want it, one day he will eat something, next refuse it! Or say I don' want to get fat, he is not, is too thin! We work around Diabetes and tongue surgery which eliminates some textures.
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Not qualifying for Medicaid does not mean that you cannot bring in outside help. Medicare will pay for some. You and your husband will have to pay for the rest. It's worth it for both of you.

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.
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Bonnets42 May 2023
Been looking for respit in home care. So far no luck!
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So very glad to hear you use these words " elder lawyer" and " getting help"....! Please do this !

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.
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Bonnets42 May 2023
He has lost 20 pounds in the last 5 weeks. Lately looses about a pound every day or 2!
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Well, first off I would sleep in another room. Initially, I did that, however, I eventually had to move my husband to another property I owned with 24/7 care as I was not getting any rest and still had a business to run. He spent the last 6 weeks of his life in hospice, in a facility.

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,
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If you can do it.... Hire someone like a family member or caregiver who can work nights or the hours you want so you can rest... Maybe try and get him more active and doing things during the day that work around more normal hours that help you help him. Getting help is crucial for your mental and physical state... Along with proper rest physically and mentally. Protein shakes or drinks that he likes will help along with having him on a more protein diet.... You can't force them to eat but when they do you can make sure it's protein and calorie based. The body will only take so much though at a certain point. Boost or Ensure will help also. I wouldn't suggest necessarily sleeping in another room if you can help it for now. If something happens where he falls it will be terrible and you might blame yourself for not being in there so you can hear. That's why you need help to have someone else watch him and help him do things while you can get a respite... Trust me it makes all the difference in the world.... Hang in there!!
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Southiebella responded well below. As with a infant/child you have to change his sleep/awake habits a little at a time. Getting him outside during the day will help reset his day schedule. Sunshine is good medicine. Set a schedule and stick with it. YOU need to sleep. I would definitely sleep in another room.

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?
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I've come to the conclusion that sleep is better than food for health. You need to get more sleep and one way would be to move to another room. Do you have that option? Also, I highly recommend that you work on establishing a better routine.

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.
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NeedHelpWithMom May 2023
Oh my gosh, I craved sleep when I was a full time caregiver for my mom. Took care of her in my home for 14 years. She lived to be 95.
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My mrs. Was the same, and it came and went. She hated going to rehab and it depressed her for a month or two before she was herself again.

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
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I discovered that some of my mother's medications caused a loss of appetite, and/or insomnia. You might want to review that with your doctor. Also, since she has dementia, whenever her moods were "off" she didn't eat. Once her meds were adjusted properly she ate better. It was a difficult trial and error with her physician. I know how hard it can be. Good luck.
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My mom didn’t eat much either she couldn’t taste anything . Get some sleep for yourself . Hire someone overnight .
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As we get older our taster changes. My daddy would not eat the same foods as he would when I was growing up. he wanted salt on everything because that is all he could taste. Also, vitamins may help - ask his doctor first as to not conflict with his meds. Also, try keeping him active during the day so that he is tired at night. My daddy had sundowners and I had to give him a schedule as when to go to bed and when he could get up because he wanted to go to bed at 10 am and up at 1am. Ask the doctor if melatonin may help. These are only suggestions and please always ask your doctor before adding or taking away medications.
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Your profile says that you are a retired nurse. Many nurses don’t want to be a caregiver outside of work. I totally understand that. Been there, done that! Am I right?

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.
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