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She has no idea she is declining. She's not bad enough to need a home or for us to get a court involved or anything, but this will put Dad in serious danger. He doesn't like the idea of her handling his meds, but doesn't think anything can be done to stop her. She spends hours trying to read the paperwork from the pharmacy, but can't understand it. She just thinks it's too dangerous for anyone else to be distributing.

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Your dad is his own decision maker. He can hire a service to fill an electronic pill dispenser.

Have you sought a "needs assesment" by the local Area Agency on Aging?

Mom can demand all she wants. Ultimately, Dad is in charge of his own life. Does mom become verbally or physically abusive when crossed?
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AudioMan Apr 2021
Verbally abusive, yes. Dad has a heart condition and cancer, so he's pretty much immobile. He needs someone to bring him his pills. The electronic pill dispenser idea might have merit. Thank you.

Not sure what a needs assessment or an Area Agency on Aging are. Six months into this caregiver thing, and I'm still getting the hang of it.
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Assuming he has no cognitive or memory issues himself, order his meds through www.pillpack.com and have him hide them where she can't find them so he can take them correctly himself. If you live local to them, have the orders go to your house or a neighbor's. If she wonders where the pills went tell her a "therapeutic fib" that will put her off the trail.
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Dad needs to try to verbally stand up for himself. I like the above ideas about how to keep mom's hands off his pills. Sounds like she can't be trusted. Therapeutic fibs can be very helpful. Figure one out. "The doctor says this is how we have to do it."
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Do your parents live alone? If so, not to sound alarmist or anything, this is a disaster waiting to happen. Your father's medication should lock up where mom can't get at it.

If your parents are still in their own home, in home help should be hired for them (using their money); or they should consider moving into a facility where responsible staff distributes meds.

Needs assessment is pretty much what it sounds like. Usually a social worker assesses your parents to determine what services each need. Most states and counties have resources to assist the elderly. Start with the local county where your parents live - ask them to direct you to social services.

In addition, if not already done, before your mother is declared incompetent, someone should have a durable powers of attorney (one for each parent) for medical and financial so that someone can act on their behalf when it become necessary.

Also, if not already done, you should know what your parents' wishes are long term. You didn't give a lot of information regarding your parents' ages. You said your father has heart issues and cancer and that he is immobile. Do you know what medical treatments he wants, does he want medical treatment? If something happens to either parent and their heart stops, do they want to be revived? This site is a good resource and you can find answers and get advise - both good and not so good depending on your viewpoint.

Good luck.
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Most people with dementia are not aware they have any cognitive decline. I highly suggest you hire a elder law attorney to gain guardianship of your father. This is pretty much one way to protect him.
BEST wishes
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Go and get some of those daily medicine dispensers and fill it for them. All he has to do is ask for the medicine and then take it out of appropriate time/day. Or if he is competent, he needs to tell her he will manage his own pills. You could make a chart of meds for AM/Lunch/PM and let him use that as a guide as to what he should be taking. My mom manages her own with the cheat sheet I made for her. Works out well.
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Are you local to where they live? IF so, the timed/locked dispensers could be a way to resolve the issue. Depending on how many times/day need to be set, these can be set up from 1-4 weeks. You would take the remaining medication in the bottles home with you. Only the current medication will be available for him to take - alarms (visual and audible) alert and the slot is open. So, if you can be there to fill it, that's a start.

The only issue I can see with this option is you said he's not mobile - if she takes the dispenser, back to square one. If you can find a way to secure it in place, that might help. She wouldn't resort to breaking it, would she? Any chance of having a nanny cam, to keep an eye on things?

Also, would it be possible to have you pick up the medication or have it sent to you, so she doesn't get the "paperwork"?

As others have noted, hopefully you have all the legal paperwork in place (POAs, wills, medical directives, etc.) If not, now is the time. It may or may not be too late for mom, but at least for dad. I wouldn't spend the time and money needed for guardianship - that won't mean or do squat for "managing" her. At some point in the future, you may need to get it for her, but that's for another time!

If you are not local to where they live, who takes care of everything else? She may not seem too bad, but my mother "seemed" okay as well - she lived alone when dementia crept in. It wasn't until we took the car and I had to bring supplies and food or take her shopping that it became apparent she could no longer cook anything! No idea what else she couldn't do. Cameras were set up, mainly to watch who was coming/going, but it revealed her wearing the same clothes over and over, sometimes food stained, once for 6 days in a row! So, unless someone spends time there, at least a week, to see what goes on, how do you know what care he is getting? I tried bringing in aides, but it didn't last long. She refused to let them in, stating she was fine and didn't need them. Next stop, MC. None too soon either - she "bruised" her leg just before the move and developed cellulitis, which can kill even younger healthier people!
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Thank you everyone for your help. I do live with my parents for just these reasons. Mom seems to be relenting and letting my brother continue to administer the pills. I'll see what can be done about paperwork in the future. Crisis seems to be over, thank God!
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Geaton777 Apr 2021
The trouble-shooting never ends because dementia is constantly changing our LOs and their behaviors. I highly recommend you watch some of Teepa Snow's videos on YouTube. She's a dementia expert and you'll learn things to help you with preemptive strategies as you care for your parents.
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Sounds like Mom has trust in brother & AudioMan - good!

The pill issue is thankfully resolving... but is just one of the multitude of coming issues. Dementia comes with many surprises!

While it may seem having two adults on-site or nearby (maybe even more?) overseeing & caregiving is adequate, I would get busy planning my next steps now.
I would arrange that needs assessment asap. Get some home health aides in the door so that Mom & Dad get used to extra help BEFORE the next crises hits.

As I'm sure you sadly know, heart, cancer & dementia are all progressive. Maybe you wish to keep them in their home as long as possible? I get that.

There are many families in crises because 24 hr supervision or care became necessary before extra supports were in place.
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Re: Needs Assessment and Area Agency on Aging.

Your county has an office of aging, senior affairs or something like that. Google is your friend here.

Once you find them, make contact and sign your folks up for "case management" services and a "needs assessment". They will send someone out (usually a social worker ir nurse) to assess the level of care an elder needs.

They can also advise on eligibility for grants, entitlements and respite. At least in my area, there are waiting lists for these services, so get them on a list now so that they are in the process before the next crisis hits.
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Beatty Apr 2021
The waitlist is long where I live too. Often lowest level services are approved while waitlisted - which is better than nothing... but if unable to cope at home, hospital treatment is likely, then if unsafe to go home, transfer to any available respite bed, then often permanent NH bed. If lucky, somewhat close to their area.

I'd much rather have a better plan than that if possible.
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Audioman, following up on Beatty's suggestion for a better plan and your statement that mom is not so bad "yet"...BOTH your parents have progressive diseases and mom doesn't acknowledge her limitations

From the collective wisdom here, your parents are one fall, one misstep away from a disaster. Right now, you are all propping up a stool with two legs.

Starting looking at facilities near you now--rehabs with NHs, MC and AL on the same campus. Make a list if the ones that are acceptable.

Trust me, it is awful to have to run around looking at facilites when you have one parent injured and undergoing surgery at a hospital and another at home needing care and supervision.
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Im assuming she was raised to obbey or at least knows that the man is head of household and his word is the last word. Now I know there are single women who are head of household and I know that household duties and decisions are sharded by both. But if she was raised in church or is in her 70 s then she was raised to be submissive. He can get a nurse to come in once a week and lay the polls out for both of them and your father needs to put foot down or once the nurse has put out a weeks worth in a container efor sloyts for each day then he needs to take container and hide them. Say out in garage or tool box. If she is in beginnings of demential I think someone in authority such as a nurse can te her to leave them alone once she (nurse) has filled the container. She shouldisten to nurse if not then hide them.
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Maryjann Apr 2021
Oh my. Depends on the woman, depends on the church. My very church-going mom, who would be 102 if she were still living, and my dad, who would be 105, took "obey" out of their marriage vows. And my 86-year-old MIL just runs right over my 91-year-old FIL most of the time. Not a good strategy.
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The automatic pill box worked well for my mom & dad. Didn't have to think - just see the blinking light, the open cup, & take the meds! Some companies will even fill them for you - for a fee.

I tried hiring outside help, but my folks seemed to think they had to "entertain" them. I think this came from their generation. So that didn't work out. Eventually moved them to AL which was the best option. And an elder law attorney can be a godsend.
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If you can manage it, have your dad change his pharmacy to Pillpack.com or any other pharmacy that will dispense the medication in bubble packs. That way a professional pharmacist is managing how many are dispensed at a time.
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Medicine is so difficult. I imagine it is even worse when your mom is trying to manage your dad's medication.
My mom went through a period when she wanted to manage her own medicines. She had a big 4-a-day, 1-week medicine box that she wanted to fill herself. For a while, I would sit with her and make sure she didn't confuse Monday with Noon, and retrieve pills she dropped. Maybe you could "help" your mom organize your dad's pills?
Eventually my mom got bad about when to take the pills, but we were able to put the pills out of sight and out of easy reach. I would get my husband to distract her while I refilled the boxes where she couldn't see me - magically refilling pill boxes. Then we went through the stage where I was really stupid because I couldn't remember she could have a pain pill every 2 hours, and only allowed her pain pills every 4 hours. We tried written schedules, dry-erase boards with time of next dose, Everything. I think anxiety and addiction played into that horror. The best I could do was simply be with her when she was upset. Now, we are at the stage where she forgets to swallow, so we crush the pills that can be crushed and give them to her in applesauce, and the pills that can't be crushed we put in her mouth and try to get her to drink enough water to wash the pills down.
Everything feels like we are fumbling our way through, but we do the best we can. It's all anyone can do.
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Ok this might be considered sneaky by some, but I would change bottles, and put some fake pills in the bottle with his meds His actual meds would then be in another bottle labeled differently. It would have to be given to him by another person though. If he is mentally sound, he could keep the bottle by his bed hidden, and take them as usual. Since she has trouble reading small print, the actual contents of the bottles could still be labeled correctly, just in very small print. Or maybe doctor or you could tell her he was discontinueing his medication, then have a caregiver or you, give him his medication when she was not present. Anything to get her out of handling medication. Of course, this is a very serious problem and you might just have to resort to taking the medication out of hands and sight altogether and having someone else in charge. Then, of course, you will be making her very upset and the stress could make her husband's heart problem worse. Or give her a bottle of sugar pills to give her husband to keep her happy while someone else handles the actual medication. No easy answer.
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Is dad competent to take his own medication? If so, a nurse or family member can set up a pill box for him. He will need to be in charge of taking his medications.

If he can not identify medications by their appearance and do appropriate checks (bp or hr), then it is time for somebody else to give him his medications. Stress to mom that his medications are dangerous so a "nurse" will give them to dad. The "nurse" can be a trustworthy person or it may be time to enter assisted living.
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Ask their pharmacy if the medications can be dispensed in pre divided doses so she can give him what he has to have at the right time but doesn’t actually sort them out. In the UK we do them in weekly trays I am sure you will have something similar in the US
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AudioMan: Imho, you are attempting to address the lesser of the problems, e.g. medication management when the much larger picture needs to come to the forefront and that is the fact that your parents require facility NOW. In re the medications, you could direct the pharmacist to order pill packs for the patient. "He doesn't think anything can be done to stop her" is an untruth.
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cweissp Apr 2021
You and your brother should go to different facilities and check them out. Hopefully you can find a facility that have different care levels so your parents can be on the same campus. I don't know how remote you all live or whether your area has multiple choices for care choices. Since they won't qualify for Independent living, the facility will do a needs assessment too determine what services they require.

If financials are a problem you will need to get them medicaid coverage. Use an attorney that specializes in elder law or medicaid enrollment. The biggest fear I had with my parents was dad going into a nursing home, mom continue in AL and all the money gone and mom would have no place to live and little money to live on. While it felt like I did most of the work getting the paperwork together it really helped. Dad died shortly before medicaid was approved and mom was in good financial shape (regardless of whether dad lived 6 months or another 100 years.) for a few years at least. If mom ever needs medicaid, I'll be able to handle it myself without an attorney.

I don't know the prognosis of your father, but when the time comes I strongly urge you to look into hospice for him. Dad was on hospice for the last 6 months of his life and it was a godsend. Hospice cervices are covered my Medicare part A - if not hospice related other insurance should cover. Our family used a not for profit hospice. The hospice RN and LPN showed up once a week and bath aid came once or twice a week. They have social workers, chaplins, provide different type of therapies ie music therapy. They provide service to the entire family and after dad died they offered grief counseling for the family.

I don't know how far into dementia your mother is, know it will get worse. If she insists black is white and white is black don't argue, she won't be able to understand. Visit her alternative universe - Dad was always worried because he owed someone money (not) - my standard response was that I had already paid his debts. - Now that doesn't go for something that is hazardous to life and health - such as trying to administer your father's meds. Learn to redirect - though that doesn't always work.

By far remember to breathe. It's hard work and can be thankless to the LOs you are caring for. Best to you and your family.
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