I joined this forum after years of reading articles and questions hoping someone's journey might help w/ our own. Here's some background on our situation and the issues we are having.
DH is an only child. We are in our late 30's, and his parents are in their early 70's. Both of them are retired educators. DH is VERY non-confrontational to the point of avoidance because of his parents. They have very few family members they are on speaking terms with. When concerns are addressed, they turn into confrontations and then it's a big blow up with tears, guilt, and gaslighting. There is also unresolved conflict in the marriage, but they still live together and put on a show for visitors.
The last few months, my husband and I have noticed that their clothing smells sour. Like clothes that sat in the washing machine too long. My FIL didn't fully regain his sense of smell after covid. Yesterday, my husband went in their bedroom and the entire room smelled sour. He wasn't sure if it was their sheets or if it was the clothes in the closet, but it was SOUR. A couple weeks ago, we visited their home and there was a distinct smell of (pet?) urine in the living area. Ever since I've known them, MIL has always kept scent plug ins in every room and wax melts burning constantly.
MIL has hearing loss. When you talk to her, you have to speak loudly and she has to see you. She moves her mouth and tongue slightly as you're speaking as if she's reading lips. (FIL has noticed it too.) I'm not sure if this part is related to hearing loss or something else, but I've never seen anyone but children do this: when she reads something (ex closed captioning), she reads out loud to herself. When she's reading a text message, you can watch her mouth moving to the words. Of course the TV and car radio are at a deafening volume. About a year ago, after accusing our DD of being disrespectful and rude, we knew we HAD to say something. She reluctantly consented to a hearing test and she does have marked hearing loss in both ears, but said she was waiting to let her hair grow out to cover her hearing aids. She still hasn't gotten them. Since that time, she has totaled a vehicle and has had a couple of near misses with my kids in her car. Kids don't ride with Nan anymore. FIL doesn't drive, but he KNOWS she needs hearing aids and wants DH to try to talk her into it because "she won't listen to him."
FIL is a pain clinic patient and is prescribed 2 different pills (one is hydrocodone) and ambien and takes and OTC sleep aid WITHOUT his dr's knowledge. He has been on hydrocodone for well over 10 yrs. He has over medicated a few times and "slept it off." Two years ago, he took his hydrocodone & ambien too close together. He fell asleep in the shower, getting out of the shower, and fell and broke a tooth on the counter. He thought it was funny. FIL & MIL have different sleep schedules, he's a night owl and doesn't wake up until around noon or later, which MIL has to be quiet- effecting her quality of life.
They hear or retell things differently than the actual event. I've been with them in certain places without DH and the retelling of the event to DH is always full of grandiose of what they did or what someone said or extreme distaste if the encounter was negative. I know that she invents conversations because I caught her multiple times. Knowing this happens OFTEN, it makes me wonder what their Dr's are aware of and what they're relaying back to us.
We had a "future care" meeting w/ them about a year ago. DH is supposedly on their HIPAA. He & I have discussed multiple times writing a letter to their PCP to discuss our concerns. Since it becomes a part of their medical record, he's afraid they will find out and then cut off contact with him. They have no other family close by, we are it. We can't take off work and go to their appts because they're almost an hour away from us.
Has anyone had any success in resolving similar issues or do we need to learn to cope?
The old person smell, that just comes with age and no amount of cleaning seems to get it to go away. I used to do my father's laundry and nothing got the funk out. His t shirts were stained yellow and felt as if they were dipped in wax. You just couldn't wash that out. I just threw them away and bought new.
Sadly they are allowed to live like this. You just have to wait for a trip to the ER and tell them they are an unsafe discharge. Do not agree to take them in. You know they need AL but until they do there is little you can do.
What is it about live planning that freaks people out. After dealing with my father and seeing the expense of AL I made sure that I would have enough retirement income when the time comes. My husband doesn't plan for such things. I keep asking him about his brother who is 85 and lives alone in a 55+ community 2 hours from us. He did name my husband POA and did write a will so that is something. But what if he can no longer live on his own....what does he want? My husband refuses to ask. "They don't talk about that kind of stuff". I have already been through this in my late 40s/early 50s with my father and I don't want to do this again in my late 50s with my brother in law. My husband is mid 70s so there is a limited amount that he will be able to do. He keeps insisting that he knows what I went through and I tell him that while he did help on occasion with my father, he had not idea the extent of work I was going through. I've tried to warn him and that is all I can do.
You are not dealing with dementia here. You are dealing with a couple in their 70s who are dealing with hearing loss, addiction, and poor housekeeping skills which are apparently ongoing and worsening.
My point is to say you can speak with them, you can have family meetings with them, and you can do counseling/planning meetings with them, but you have ALREADY done all of these things to no avail.
There would never be POA over such a couple as they will continue to live as they please. There will never be conservatorship or guardianship over such a couple because no court would take their rights from them without a diagnosis of incompetency, and they are not likely to BOTH be diagnosed as incompetent to make their own decisions for some time yet. For decades, in fact.
When ONE of them is, then the other will be the "caregiver" in all likelihood.
All of this is to say that you are helpless in this. You have tried to help and they have refused help.
Were it me, at this point I would step away.
I cannot imagine much reason for trying to build a solid, good, ongoing family activities history.
If you speak to your husband about how he was raised you may see that this is not overly surprising to him, and in terms of years, early 70s today is quite young to be descending into such a state if there is no history of such a lifestyle.
As to speaking to MD, do write a letter, but it is unlikely that the MD can speak BACK to you without permission and he won't have that. If he is the one prescribing the opiates, then it is unlikely he/she will be overly responsive. And who is to say that the Dad here is the only one on medications? Some of what you describe with the Mom sounds a bit like tardive dyskinesia which can result from some medications.
You can do as you like here> as you feel you must do. But do consider reading the book Never Simple, a memoir by Liz Scheier. While her Mom was mentally ill and that may not be the case here, her decades of history trying to help deal with her mother along with the auspices of the social services of the city and state of New York is an eye opener as to exactly what can be done, and more importantly what CANNOT be done for such folk.
I am sorry you stand witness to this. I wish I could give you better news. It does seem to me that you have tried everything possible. Do get on with your life making your own history, your own good memories.
If you can get them to get hearing aids, studies show by not using them that the brain can be compromised.
This is a very common situation. I live at an apartment complex and at my previous apartment I had to call Management and ask if a "next of kin" can be contacted for neighbors who were outside on the lawn looking for their key in a winter coat--it was August in the 90's.
What usually happens is "an emergency". It's all too common, "I am not leaving my house, I am not going to stop driving, etc.".
They both need an appointment with their primary care doctor, do an evaluation for services brought in. But, I would check their mattress for urine stains and probably get rid of everything. Perhaps, is a hospital bed with 1/2 a railing suitable. Some insurance companies will pay for 80%. There is a special mattress with a remote and the half rail they don't feel so closed in.
Basically, you have go through everything--their paperwork, refrigerator. clothing and start a "new normal" for them. One of them may have to go to a day respite even if it's just for a 4 hours.
The doctors see the patient for 8 minutes. You wait, wait and wait in the reception area, one person weighs them, another vitals, the doc enters the examining room--have you been out of the country, any recent falls, any recent hospitalizations, they go through the medications.
8 minutes later, they want you out the door, see you 6 months. Your parents everything is fine--not so.
You have to direct the conversation, go on the portal (sign up) and tell them the "true" story. What you told us. So when you enter the doctor's office, they have an idea of what is going on at home. That's if you can even get them to the doctors. Most men I know, at least in my family, wouldn't go to the doctors.
You have to fill in the doctor on what is going on at home. They have 100's if not 1,000's of patients that they really don't even know.
I would type up a list of each medication for the individual and post it on the refrigerator in case they go out in the ambulance. Keep a copy in your wallet. This situation will come to a head, one way or another.
You have to keep them safe and from self harm. I don't like the idea of the OTC meds. The doctors need to know this. Help needs to be brought in soon. VNA, physical therapy, laundry service, Church people, etc.
Do they have the proper nutrition? Are the doors locked at night? Will they leave the stove on? Will they wander? It's an accident waiting to happen and you understand this that's why you are writing in.
Start small and make gradual changes and tell them you will them and build a team...
" safety" is a primary necessity, contacting the PCP is appropriate.(as the POA ( son is assigned as POA, right?). The PCP can refer you to a case manager ( usually a licensed social worker) who can help assess both of the parents " level of care needs" and, offer options for care and safety going forward. The PCP may directly refer you to some home care services options to consider.
Another option is to call APS, Adult Protective Services, and report the situation observed in the home and, APS , will make a home visit and, possibly make suggestions/ options known to the parents, family. You can tell the parents ( if you wish) that you are going to make the APS call OR, you can call APS anonymously and make the report.
Aging parents ( patients) are often grieving and fearful and choose denial and combative resistance instead of accepting care. They can be extremely non compliant. This all leads to more safety concerns.
You should consider consulting with an Elder Law Attorney to fully understand the many varied levels of accountability and how to navigate this complicated process; made more complicated by the patients denial and non- compliance.
If you and your DH ( darling husband???) feel that the parents are cognitively appropriate to understand and retain what you are saying , you can choose to tell them about these options named above; or simply proceed as you and DH choose for the parents and all of your well being, safety, and quality of life
Do not hesitate to take one or more of the above steps toward beginning to help " normalize" this unsafe and hygienically compromising situation.
Get emotional and spiritual support for yourself! ( Pastor, chaplain, other counseling).
The other issues that you describe are their issues - mainly personal and marital - and you're not going to correct them.
Your husband's parents have obviously cultivated a fear of their anger in your husband. It's totally understandable that he doesn't have the stomach for confrontation with them.
We all read lips when we listen to other people, whether we realize it or not. So what if MIL has developed a habit of moving her mouth when she is listening or reading - that should be a non-issue. If she doesn't want to wear hearing aids then she just won't get to hear what's going on around her. I wouldn't raise my voice to accommodate her though.
If your FIL has developed an addiction to hydrocodone and ambien then you won't be able to change that unless FIL wants help. It's his addiction so he has to own it. If he's a night owl, then so be it.
If they want to lie to their doctor, you will not change that, and going around them will surely ignite their anger.
If they embellish and are grandiose, then again - nothing that you should waste your time trying to correct.
You're not going to be able to fix the smell in their home either unless they realize it and want to correct it. At least you don't have to live there.
Enjoy the time that you have now because it sounds like they're headed for assisted living at some point and that will be when the confrontations will mostly likely have to take place.
Peace.
For FIL, you are concerned about his medications and the OTC sleep aid. That may trigger a change in medications based on the CDC's updated guidelines on narcotics. Most doctors have reduced their prescriptions because of fear of overprescribing and their licenses. That letter may go to the narcotic prescriber if it it not his PCP.
It would be better if there are other siblings who can all get together and have a family meeting as well. Just make the statement and ignor the responses from them if they are contrary. Example: hair needs to grow out. Your response would be "I know what you mean but your problem is happening now. What can you do"
When I was 81, I was still doing most of what you are, too. When we moved to the 55+ community where we live now, I was "only" 77 and still climbing ladders to trim our bushes/trees (probably not the smartest move). Eighty-five+ has been a big wake-up call physically, but that's just me. It's difficult to accept not being able to do what I once did. Lifting, bending, even walking--which I did daily at 1-2 miles/day for many years--have become harder and that's a drag.
On the upside I still drive, grocery shop, clean (with a helper every 2 weeks) do laundry, cat care and other basic housekeeping tasks. I can no longer maintain a garden, which I miss, and we never did travel much. As I've mentioned in other posts, we both worked into our mid 70s (I was 6 days short of 78 when my involuntary retirement occurred).
So. . . aging is a very individual thing for all of us, I guess. (I still haven't mastered my smartphone.)
"I was hoping to plan and mitigate the disaster".
I get that. You're a planner. You're looking out at the horizon at the ominous shapes out there.
Is your DH more of a here & now person? My DH says he plans.. yes he looks at grocery use by dates.. also what the utility bills were to plan for the next ones. But aging relatives? Nope.
We can hopefully prepare with you. Maybe not divert your in-laws 'bus' from crashing - but how to stay OFF the bus when it does. How & who to alert.
Big difference.
As you pointed out, sour smell could come from many places. One of which is just clothing that has been worn, then put away for a long time. Also, not using enough detergent in the laundry to get the clothes truly clean.
About hearing loss, another way to deal with it would be to get a personal amplifying device. (Pocket Talker from William Sound) Then, before you have any long conversations with them, force your mother-in-law to use it before anyone starts talking. She probably is not aware of how much she isn't hearing. My brother said that hearing aids are really for the other person, not the person wearing them. This is very, very true. If your MIL doesn't want to hear, then there is no reason for her to get hearing aids. In addition, there are all kinds of associated "issues" with hearing aids that many seniors don't want to deal with.
Is there a way for you guys to stay overnight with them? e.g. take a vacation together? That way, you might be able to get ideas on how to help them and they may get memories of how life used to be or could be. Remember, your version of convenience and life is not the same as theirs.
There are many different reasons for resisting help.
P.S. I would have an in-person discussion with their PCP to see how much of their medical record they can see.
P.P.S. You need to figure this out soon...they could hurt someone driving a car, especially if he has had the specific combination of pills...
For clothes that have that smell after it is laundered, if the clothes can handle it, using a laundry sanitizer works for me.
Plenty of us are in the “waiting for a fall” stage because there is nothing we can do.
Something is off with this relationship, parents and son. Something is being missed I am thinking. A TON of AC long time responders are hale and hearty at early 70s. Nothing dire is mentioned above. No one sees or hears well as they once did.
(Edit: Truth be told, I probably needed hearing aids for 5-6+ years before I admitted it. Again, stupid me!)
Can't put my finger on this, but the OPs above are both ONLY early 70s. I mean many out there just cutting up the rug at that age, so something here with dependence on son growing and his willingness to allow it to is off for me. Can't pinpoint how.
To clear a few things up that wasn't in the original post. (my apologies.)
MIL has always been on top of her housekeeping. Her bed was always made, dishes were always put away, laundry was done daily, and their home generally smelled like you walked into a candle store and she has always worn different body sprays. I mentioned the soured laundry because this is a NEW issue. I don't want to embarrass her by pointing it out, but I know from reading articles and other posts that the sense of smell does begin to slip as people get older.
My in-laws had some people their age that passed away. It shook them, and got our family thinking that we need a plan. The "Future Care" meeting was a general questions that DH & I wanted clarity on so that we could be respectful of their wishes should something happen, who their dr's were, to help them maintain their independence, what does the survivor want to do living arrangement wise if something happened to the other one, and to make sure we established some healthy boundaries. That's how we found out that he was included on the HIPAA.
I recognize that you cannot force help on someone. But I also have experienced many times that the crisis happens and we are expected to rescue them because "they're family and they have no one else." (And do rescue them.)
I agree, none of this is my/our problem until they make it my/our problem. I was hoping to plan and mitigate the disaster. I was looking for advice and to see if anyone had experienced a similar situation with those who resisted help, resisted hearing concerns, but came around and saw the proverbial elephant in the room.
My husband has seen a therapist in the past. Should he need to, he would go to therapy again. He recognizes how they are, but it doesn't separate him from the feeling of being responsible for their well-being. Maybe a therapist could help him with that in the future.
Again, thank you all for your responses.
I appreciate you clarifying, but it’s still not your issues to deal with or solve.
Ask them if they want to get cognitive tests and if they say no, then there is nothing else you can do.
Many years ago my husband told me that he wasn’t ever able to communicate well with his father. His dad felt as though he was never wrong!
His mother was a sweetheart and we had a wonderful relationship with her. My husband chose not to be involved in his dad’s life after his mom died. I supported my husband’s decision. It’s sad, but he wasn’t a man who was easy to deal with.
Trust your husband on this situation. He was raised by these people. If he is avoiding them, then that is a sure sign of a red flag! Don’t take on any responsibility that you will regret later.
Best wishes to you and your husband.
Will your husband see a therapist?
Also, another time a friend, C, and I were very concerned about another close friend, J, and C made an appointment to see J's doctor, a psychologist who was treating J for severe depression. C mentioned to doctor that I wasn't able to be there for the conference but would like to write doctor a note describing behavior I'd witnessed. Doctor said that was okay, but she'd have to inform J that I'd written it. I assumed it was a matter of ethics for the doctor.
So I don't know what the result would be if you wrote a letter to their PCP. Think about this, though - would it really be so bad to be cut off by these parents?
I agree with others on here who say that it's not your and your husband's problem. You seem to have a good handle on who and what they are, so it might be best for all if you and husband keep your perspective and don't get muddled up in their mess. You have no duty to be responsible for anyone if they aren't nice to you.
Your in laws have the right to live this way.
My husband is an only child, as is my MIL.
I moved them across the country into a senior independent living apartment bldg after dad had 3 minor fender benders and gave up his license willingly. Mom was the unreasonable one, taking Ambien nightly, falling and breaking her ankle, going down the dementia highway but in denial and insisting she was perfectly fine. Dad had a brain tumor which eventually had me moving them into Assisted Living where dad died 10 months later. Mom stayed on in AL for 4 more years until I had to segue her into Memory Care for 3 years.
They were reasonable, however, and allowed me to manage their lives. Had that not been the case, I'd have had to wait for a crisis and then move them into managed care when the hospital said NO to living alone.
Its really a mess when parents make no plans for their old age, or when dementia hits and they can't think straight anymore. Which turns OUR lives into hell on earth in short order, too.
If your DH hasn't been given POA, your hands are pretty much tied right now. I'd wait to be asked for help before swooping in to save the day, bc they likely don't want that.
Best of luck to you navigating this whole situation.
Your profile says "future caregiver".
Nuh-uh.
My rule of thumb is that I will help arrange care for folks who are cooperative. Folks who aren't cooperating with my best attempts to arrange care are left to their own devices.
My mother (who was cooperative, raised her 3 kids to work as a team) got great care.
My MIL, who was manipulative, dismissive of any doctor who didn't agree with HER diagnosis and who played her kids off against each other got TERRIBLE care.
Do not prop these folks up. If they have an emergency, call 911 for them. Then call social services at the hospital and explain that you will not be providing care and that they can no longer live alone.
Also, please read this:
https://www.agingcare.com/discussions/if-you-are-going-to-become-a-caregiver-480769.htm?orderby=recent&page=1�
They are young. I think you are way too enmeshed with them. I think you need to step away. Their future care plans are up to THEM and THEM ALONE.
You are not responsible for their pet problems and poor housekeeping and poor decisions about when to turn on the washer. Also not about their care plan for THEIR FUTURE.
If you and hubby take on POA for these folks you are going to be going for two more decades with it. That is for sure. AT LEAST TWO MORE DECADES with everything getting a good deal worse. And with zero control or success or cooperation.
This has likely been an odd marriage from the get go. Let it continue to be and step away from it and get on with your lives. In fact, move to Alaska.
If your husband is so entangled with them that he cannot do that then you have a really tough decision to make for YOURSELF. If you have no young children it would only take me about 5 minutes to make my OWN decision, but YOUR decision is yours to make.
I am sad to sound so "brutal" when you are new and you are confused and you are in pain. But this entire situation CANNOT BE FIXED. And trying is going to cause a good deal of pain for all involved without any success whatsoever.
Sounds like his parents are a hot mess due to drug usage (FIL, at least). Seventies is a little early for their wheels to come off the wagon cognitively, at the same time, but anything is possible if they aren't taking care of themselves.
If things get really bad and no one is their PoA, then APS will eventually need to be contacted so his parents get on their radar as vulnerable adults. Unless your DH acquires guardianship, the county eventually will. "Someone" is required to be a legal guardian in order for decisions to be made on another's behalf.
Regarding the HIPAA form... this is an annual thing and the form has to be filled out and signed by each parent for every doctor they see. Each parent needs to write in your DH's name as their Medical Representative, sign and date the form and hand it back to the receptionist at the clinic. This doesn't give DH any power to make decisions, it just legally enables their doctors to divulge their private medical information to your DH without the permission or presence of his parent. And it expires every year (I have to renew every year so assumiing it is all the same in every state).
If DH really is the MR for his Dad (with his PCP) then DH should definitely call and let that doc know his Dad may be abusing his oxy plus taking another OTC sleeping med.
His Mom may seem like she has a hearing problem (as was confirmed) but she may also have a comprehension problem, which can be confused as a hearing issue. No telling what has caused this or if it will get worse.
Lots of other medical/health issues can mimic dementia symptoms: UTI, dehydration, vitamin deficiency, diabetes, HBP, tumor, stroke, thryroid problems, over- and under-medicating of prescription meds...
If DH is the PoA for one or both of them then he has hope to get some things under control but it won't be easy if they are in denial or uncooperative. He would need to read the PoA document to find out what activates his authority. If it is a Durable PoA then it was effective the moment it was legally completed. If it is Springing then it usually means 1 or 2 medical diagnoses of incapacity is required first.
You will both need to work on accepting that things probably won't go smoothly. This is the retirement they planned for. If they ever want their son's help he needs to leverage this by asking they assign him as DPoA. If they won't do this, then he should consider watching things unfold from the sidelines. Easier said than done. Been there, done that with my Step FIL, stood by and allowed the county to get guardianship over him. It is what it is.