Without meds for heart failure, kidney transplant, seizures, diabetes, glaucoma, he could have multiple crises and I (wife and caregiver) wouldn't be able to handle it. Should I just leave him alone to do whatever? And then he can go to assisted living (which would leave no money for me) or just die?
He also remembers shapes and colors of the meds if he does not recognize the shape or color he does not take it. We did try multiple times to explain that depending on manufacturer shape and color will change if the med is generic. That part does not register in his mind.
Many times, oh so many times hospital, AL nursing staff, SNF has called me all times of day or night asking me to talk to him to get him to take the meds. I lost count and many nights of sleep. It has been a constant struggle. It got worse when he was prescribed injection blood thinner, I was being called every evening.
Well that has changed now, as he was placed under hospice care. After the shock and ethical dilemma in my head the strange relief of not getting these calls anymore and a sense of loss.
To answer your question and per some suggestions here crushing them is not always the solution as the meds are not as effective or have a bitter taste or must be taken whole due to potential damage internal organs on the way down to the stomach. You will encounter the same issues in AL or skilled nursing facility.
Please know that medicare / medicaid will not leave you penniless, they will not leave you homeless. I would strongly encourage you to talk with an elder law attorney specialized in Medicaid. If you decide that you are tired of the fight, and that has to be your decision you will know what to expect.
I am sorry to say caregiver journey is not one for the faint at heart.
Best wishes and take care of yourself.
Ask docs if u can crush pills and put in food. Ask what they suggest. Im sure they have seen this before. Some can be mixed with juice or food, but you have to check to make sure those meds can be broken down. That will stop some of the stress.
Also people who don't have much control over their bodies, or lives like little kids and elderly, turn eating into a battle ground. They gain some control back, and can control the caregiver too. Fun times. This is quite common. And the more you beg, push, get mad etc, will make it more interesting for them. You can look up ways to avoid and side step that battle. Plenty of info online, how to handle that. You can look up how to deal with a picky eateries or refuses to eat. Same exact principles. Its all about control.
There is no point in fighting about it. You will just make yourself sick over it. See if you can get a family member or paid caregiver to get some alone/me time, or to try to keep up a social life, or take a shower, relax, whatever. Caregivers usually isolate.. That makes things worse. Just a coffee with a friend could recharge your batteries.
Sonetime a new person can perk up the family member. Where they might be grumpy to you, they can turn on the charm to a new person. My mom was dying, but managed to light up like a Christmas tree for friends of hers. And had an hour conversation like nothing was wrong. She was holding court in the hospital bed and loving every min of it. Center of attention. Put on the charm like no one's business.
College kids need money and it looks good on a resume if they are in any type of medical program like nursing. Gives you a much needed break. If you don't charge your batteries getting some me time, you won't be able to handle the stress or him. You need to keep some time for you. Can't be chained to the sick bed.
Get a bank box and store your valuables and make the house thief proof. You can always install tiny cameras. So you can see what's going on. I'd tell the person so they are on their best behavior too. And say its for his safety. Not Im watching you! Lol. And while you are out, you can check up and know everything's OK and have some peace of mind. Take care of you too.
Good luck.
If he is just forgetting, then you bring his meds to him at the proper time and seethat he takes them. If he cannot swallow them, find out if you can crush them and add them to food of find out from pharmacist if or if there is a more easily swallowed form of the medicine.
If you are not available to bring him his meds at the right time, then you need to bring in some additional care taking help.
Ive found that sneaking a whole pill (provided it’s not really big pill) into a snack size Snickers bar works great. Snickers has nuts, so a bit of crunch on a pill won’t be too noticeable. Anything candy nuts if the person can eat them. Or gro7nd up if you can and put them in anything…pudding, smoothie, mashed potatoes, oatmeal etc.
Speak to elder care attorney on ways to protect your money. There are ways however it goes by state law, and this forum is from all over…talk to elder care attorney in your area to get info on your state rules.
* Try to manage your stress(ors) - meditate, let go - realize that he will do what he wants or can. The more you can be present with 'what is,' the more you can be present with and for him.
See if you can re-arrange the finances to protect yourself financially as is possible. While this 'question' immediately felt COLD, I do understand. His / your money will disappear quickly with AL. Still. You do what you can for him - and consider yourself, too. Not an easy situation to be in. Hopefully, others reading this will do what they can before they end up in this situation. Perhaps best to contact an elder trust attorney to see what is legally possible - to move assets - to protect yourself.
Consider his medical condition by discussing with MD (you likely already have). How long he may live and the quality of his life are to be considered. And not discount your life / financial future.
Gena / Touch Matters
In your profile you do indicate that he has dementia.
If he does NOT have dementia the choice to take some, all or none of his medications is up to him.
If he DOES have dementia you need to supervise him and make sure that he takes what he needs to take.
You can see if the medications can be formulated/provided in a way that would make it easier to administer. Patches, Liquids, Suppository.
If he is able to make decisions you can ask him what lifesaving measures he wants taken if the need arises. If he is not decisional YOU make the decision and have a POLST completed and signed by his doctor. And you might also want to see if he would qualify for Hospice.
Grandma's advice is very good. When people are that ill and over a certain age they have the right -- even if it is instinctual -- to make such decisions, including not eating or drinking if hospice has taken over. These are some of the natural ways people help themselves die if that is what their bodies seem to want. It's a terribly hard problem for the caretaker -- that's why grandma's advice is good; to help people be in charge of their own deaths, even if they don't make sense to a younger, healthier person, and the more legal back-up, the better.
That seems brutal to many people and even sinful to others on this forum, and I bless them and how we are all trying to get each other through this brutal situation. But I continually ask myself what I would want in my husband's situation: 94 years old, blind, nearly deaf, very confused (for example can't figure out how to use hearing aids) -- he has started a pattern of sleeping and sleeping -- probably 20 hours a day. I understand that for some dementias the increasing sleep is an indication that the person is moving toward the end, even if he no longer has the ability to communicate this. John eats but has no interests -- a man who used to direct a Shakespeare company! The standard practice at his assisted living is physical therapy, exercise, anything that makes him physically stronger, (and keep him alive longer, which we could NOT afford) and if he enjoys them I wouldn't interfere. But he has already refused several meds that are keeping him alive, and I support it, although the idea of losing him is terrible -- I cry for hours a day. But part of how I interpret my marriage vows is that we support each other at the end, and that may mean not interfering with instinctive behavior, no matter how painful it is to watch.
I'm sure others in the forum have good arguments in the other direction, too. This is ALL so personal, and each dying person is different. One of the agonizing parts of being a caretaker is trying to understand what the LO really wants/needs, and committing oneself to supporting him no matter how painful it may be to see. The best way I try to do this is to imagine over and over what I would want if I were in his shoes -- in fact, I hope to die with hospice or right-do-die in our state at the tiniest indication of dementia. No one wants to live in that nightmare. Also -- is he in a lot of physical pain? Is he getting enough palliative care and is he willing to take it?
I KNOW that my husband would not want this. Perhaps his refusals are the only way he currently has to leave when his body and what is left of his mind when it's time to go.
Apart from that, your post reads to me like you have run out of patience in trying to care for a very sick man who won’t take any responsibility for himself – even in swallowing the odd pill. This may not go down too well, but perhaps you DO leave him to make his own decisions, even if it means that he does “just die”. I certainly wouldn't blame you.
Because she had short term memory loss she didn’t remember if she had taken the meds are not. So I would just give a few in a spoon right into her mouth or in a small saucer she would tip into her mouth and offer a small bottle of water. I was trying to get her to drink more water as well and the small size was easier for her. Down they would go.
A little later I would come back in and repeat the process with the remainder of the pills. We had silly little rituals where I would be singing “The Chattanooga Choo Choo” or similar. Made it all go smoothly.
She had an aide who would record her BP, temp, O2 each day. If aunt skipped one of the pills the aide would put her glasses on her nose and say “Oh Miss P, you better not skip that one today. Your BP is a little high”. Aunt would take it right down.
But you, as a full time caregiver are probably worn out and need a break. Remember that your ability to make decisions for the two of you is your number one job. Take care of you in order to take care of both of you in that department. Give yourself a promotion and get some help. That’s what I had to do.
A while back a member mentioned a Spousal refusal form. Not sure how it works and your State may not have it but it means you refuse to support your husband. Now the member felt it would protect the Community spouses pension/401k. Something you can ask about.
I am caring for someone with alzheimer's / dementia, cancer, depression, diabetes, hearing loss, heart disease, incontinence, and stroke.
About Me
My husband and I are in our 70's. We have one daughter who is too busy with her career to help much. I have trouble with arthritis and back pain. I usually don't get enough sleep.
An elder with dementia should not be left alone at all. He needs 24/7 supervisision, if not from you or in home caregivers, then in Memory Care Assisted Living or Skilled Nursing care with Medicaid if finances are an issue. He should not be "left alone to do whatever or just die"......he's mentally incapacitated now and unable to do the right thing for himself.
Speak with an elder care attorney to explore your options.
Good luck to both of you.
You do not mention dementia, so I am assuming this is choice?
Your husband may be "ready to go".
As an 81 year old who is ready to go myself, a retired RN who heard it from many patients, and heard it from my Dad......I assure you. Some of us are ready to go. And some actually WISH to go.
This happens.
You have mentioned CHF. That means his heart is failing. He has had a kidney transplant and that will not long survive a failing heart.
Discuss with him his reasons for not taking meds.
Ask him if he is ready now to give up, and choose palliative care and/or Hospice.
Tell him honestly if you cannot continue to care for him at home, and if you and he need to discuss placement.
Only you know the long history here. I myself, at 81, am "ready to go". I don't see a long fight to stay when I have had a marvelous life, have done all the things I wished to do. At a certain age it can become a lot of "sound and fury signifying nothing".
Talk to your husband. Find out his wishes. Honor his wishes.
I'm also in MN not far from you!
Has he ever been assessed for depression? If so, is he on medication for this? If not, I would do whatever it takes to get him in for this.
Consider hiring an aid (through an agency or privately) who is qualified to dispense medication. This person can give you a break so you don't burn out. And sometimes a person with dementia (if that's what he has) cooperates more with a stranger. Make sure the person has experience dealing with people with cognitive impairment.
Or, you can hire a geriatric care manager to take some of the burden off of you. From here on in, everything will cost money. Care is very expensive. We just have to come to grips with this. That's why talking to a certified elder law attorney and/or an estate planner and a Medicaid Planner will be money well spent.
Please know that there are many medical and health problems that can create dementia-like symptoms but are treatable. He may be having his problem because he's not taking his medications properly. This is why getting him to consistently take his meds is the first way to figure out if he has dementia or not. IMO he's kinda young for dementia (unless he has ALZ).
I have lots more to tell you, so feel free to PM me by clicking on my user name. It will take you to Profile. Then scroll down to find Messages. It gives you the option to send me a message (make sure to click Private). Then to see a response to a PM, click on your own Profile and scroll down to find it.
I wish you all the best as you sort through your options. Hang in there! You're in good and experienced company here and these participants have scads of knowlege and wisdom to give you.
You say that "left alone he'll take about half" of his medication, so I must ask, why is he being left alone? Are you not standing right by him making sure that he IS taking all of his medications? And if not, why not?
Some medications can be crushed(check with your pharmacist first)and put in his foods, and others may come in liquid form to make it easier for him to swallow, so again check with his pharmacist about that.
But in all reality you are now at the point where your husbands care is just too much for you to handle anymore, and that's ok, We all have our breaking points and we all have to know when enough is enough.
Call an Elder Law attorney today, to discuss your options and look into applying for Medicaid for your husbands long term care.
You have options out there that won't put you in the poor house, but right now I don't think you can see the forest for the trees.
Hopefully you have some children or some other family member that can help you sort out what all needs to be done, since you seem very overwhelmed right now.
I wish you the very best in finding the right facility for your husband where you can get back to just being his wife and advocate and not his caregiver.
Actually, he sounds like he is past the AL stage, may need a nursing home.
Get in touch with Medicaid in your state, get the facts and go from there.
You will not be able to continue doing this appears that you are heading into burn out.
As for him not taking the meds honestly, there is not much you can do except grind up and hide in his food.
Sorry that you are going through this.
You sound kind of burnt out.
Have you done any planning with an Elder Law attorney or Medicaid planner so that you are financially protected if DH needs to go to Assisted Living?
Do you know if Medicaid will pay for AL in your state?
Why won't husband take his meds?