I have been having more trouble lately dealing with everything that is going on, so I decided to see a counselor. I think I have made a big mistake.
I tried to be candid about the difficulties we were having—including that DH was having more trouble with his meds and occasionally missed one after they were portioned out in his weekly pill holder, and that it was also getting hard to talk DH into taking a shower. She listened to everything, and then told me that if DH was sometimes not getting his meds, and was not bathing regularly (as in daily), that as his caregiver, I was not providing adequate care.
Since at DH’s doctor’s appointment next week we were going to discuss discontinuing some meds, and since I’ve carried a DNR for my husband in my purse for several years, him missing a couple of pills a week didn’t seem like a really big deal to me. As for him not bathing daily, I’ve finally decided that if all he does is sit on the couch or sleep (he’s not incontinent), he probably doesn’t need a bath every single day, and it’s not worth fighting him about it.
The problem is that this counselor is in some way associated with our state’s department of family services, and I am now afraid I might get a visit from adult protective services. Hopefully if that happens the person will have some idea what issues we are facing, but I hate to count on that.
My husband is reasonably happy, I take him out when he feels like going somewhere, I fix food that he likes to eat, and I take him to countless doctor visits to make sure that we are doing everything that we reasonably can for his health. I had thought that I was doing okay, but then it occurred to me to wonder if I’m so close to this that I’m not seeing clearly, and actually not providing adequate care.
Please, I need advice about this. What does adequate caregiving consist of? And how in the world do we explain caregiving problems to people who have absolutely no clue what it is like?
Oh, for goodness sakes. Put this out of your mind and get a good night's sleep. No one ever died--or even got sick--if they didn't bathe every day. Once a week is more than enough under the circumstances--he's not out plowing fields. Unless he's taking some sort of pills that would cause a serious problem if he missed one, then forget that, too. If you feel you need to see a counselor--a good idea, call the Alz Assn & get one who knows how to deal w/AD. And don't worry about Adult Protective Services. Even if someone does visit, your husband is happy & healthy, under the care of a medical doctor who will vouch for you. You cannot explain caregiving for AD to someone who has not had their own personal experience--don't even try. Others on the board will chime in--trust us on that. Please, Jan, it's late here in CA & I don't know where you are, but have a glass of wine, whatever will help you sleep and stop turning this over and over in your mind. You won't go to jail, he will not be taken out of your care, nothing bad is going to happen, I promise you that. Think instead of how it will all turn out in your favor--even giggle about it, kiss your hubby. Now get to sleep, tomorrow you can call the Alz Assn. Nightly night & pleasant dreams. You're doing just fine.
Jan, I do the same thing. I keep myself awake at night worrying over 'what if's?' But, I have to agree with Bettyhere. Take a nice warm shower, drink a glass of warm milk (or a glass of wineK) and to go bed. Hopefully, you will be able to sleep and wake up refreshed. Try not to worry about Adult Protecti9ve Services. They are so swamped with real problems and are so short hstaffed, they are not about to come knocking on your door because your DH missed a couple of showers. And, besides that, if the meds were keeping him alive and he missed one or two doses, well,,,, Sweet dreams. You are a dear soul and deserve better.
I'm exasperated with people like that counselor. Well, actually, 'exasperated' isn't a strong enough word.
She thinks that if your husband is not "bathing regularly (as in daily)" that as his caregiver, you were not providing adequate care?
You are doing the right thing. She is wrong.
There is a nurses' Continuing Education article which you can use to good advantage. It's long and thoughtful, and among other things it says that "reducing the frequency of bathing can prevent scaling or cracking of the skin [in the elderly]."
Since it is exactly about caring for patients with dementia, it should apply, right? URL - http://www.nursingcenter.com/prodev/ce_article.asp?tid=637597
"Dry skin is a problem for about three-quarters of people age 65 or older.
"In planning our study, we knew several of the bathing strategies had the advantage of managing dry skin (for example, reducing the frequency of bathing can prevent scaling or cracking of the skin)."
Forgive me for being blunt. When my husband was diagnosed with AD I took it on as my responsibility to give him his pills. We eat breakfast together and I give him his pills then take mine. I have on a couple of occasions forgotten to give him the pills and believe you me I can tell by afternoon what I have done. Huge diffenence with no medications. Giving him the medication and knowing it is in the proper amount gives me peace of mind and is not a big deal.
I choose his clothing and help him dress so clean clothes is never a problem and when it is time for showering I just say shower time and lead him to the bathroom and proceed to help him. No drama, no conversation about doing it. Works nicely and everyone is calm, cool and relatively collected.
Jan K... please do not take what that counselor said to heart... It isn't her place to judge you. She should have been trying to support you in your role as care giver.
In no way do I want to make light of your the situation or your feelings, but what she said about bathing shows she has no conception there isn't only one standard of personal hygiene ... hers.
Listen, my secretary takes two baths a week... period. Of course, she washes up every day. Now I'm not going to report her to social services because I think she lacks the capacity to take care of herself! And just in case you are wondering how I know about her personal habits its just that she has worked for me for years and is a non stop talker....
Seriously , don't let some one who doesn't even know your situation make you feel bad.. The key fact to me is that your husband seems happy.
Please don't worry about it...And as far as the meds, I think every single person who takes meds of any kind some times forgets to take them. It just happens..
It is a shame that you went to some one for help and support and found judgment.
Jan K.....I don't understand what kind of a counselor you have seen. I thought counselor's were supposed to help you.
Have you checked the Alz. Association to find out what services were available to you? We are overwhelmed with this unasked for job. In some cases caregivers are elgible for in home help for no charge and if you are you should take advantage of it. I don't know what stage you are dealing with but is Hospice an option for you to check our? If you can get free home aide a couple times a week for personal care for your husband would be a big help.
I also find it easier to "hand feed" my husband's pills to him when I take mine. But be careful here because if is very easy to take his pills yourself or him take yours in this situation. We both did that once and ended up in the ER for a few hours. I keep his weekly meds in a white tray and mine in a blue tray in seperate cabinets.
I wouldn't overly worry about that counselor. When Hospice was here for my Mom the aide told me she had patients she only bathed a couple times a week. I had her come 5 days a week because that stimulated her some and I thought that was important. Her skin was also scaly and thin and she used lotion after the bath. Since you have a Dr. apt. coming up soon why not check with them about some help you might be available for that will make life easier for both of you.
The counselor is out of line. I agree with that just like everyone else. This isn't quite at the level of ordering the pair of you into marriage counseling, but close...
A shower every other day or every few days is fine. Showering is an issue pretty early on because they forget to take one. Later they get afraid of taking one. But even once a week once they get to the stage where they are sitting down almost the entire day. I only take a shower every other day because of dry skin problems, and have been doing that for years. And I don't have dementia, just chronic skin problems.
I don't hand my husband his pills every day. What I do is check that his current day is empty when I take my pills in the morning. I can see his organizer from where I sit. Most days he remembers on his own. If he doesn't I hand him the organizer. I handle the evening pill (just one) differently. I hand him that one when I get my own.
You might be as surprised about family protective services as I was with the district attorney's office. I had called 911 when my husband had his only violent episode. When the follow up calls came I discovered that the ADA that called me totally "got it". She called to make sure that I had her number just in case I needed her.
Oh, and if she came from your local Aging Agency, report HER. She was out of line. In fact ask to talk to her supervisor no matter where she came from.
No real need for me to chime in here - everyone has said it all. But just for the record, my two cents worth of opinion is - Not all counselors are created equal. Some know NOTHING about Alzheimer's Disease, so if you or anyone else is considering counseling, check with the Alzheimer's Association social workers first. They can usually steer you to the right counselor.
Jan, I'm sorry you had such a bad experience with a counselor. She was off base. One of the things we have to do as caregivers is ensure that our loved ones retain as much independence as possible. If that means they miss the odd pill or don't shower every day, so be it. I do as Starling, that is I check the pill organizer a couple of times a day to ensure pills have been taken and hand him his bedtime pills. Interestingly enough he always remembers those and will ask for them if I forget. Hope you managed to put this experience behind you.
Well, all I can say is that I would have been considered the world's worst caregiver if showering and pill taking were the criteria. I would invite this idiot to spend a day with you while you are trying to coax a full grown adult into removing their clothes and getting clean....then she could watch as this same adult grabs the pills from you and flings them across the room. (Can you tell I have some experience with these behaviors...?)
Jan, you did make a big mistake. You picked an idiot as your counselor.
APS would never in a million years investigate someone reported to have (gasp!!!) failed to bathe an AD patient every single day. They have SERIOUS things to worry about -- patients who are left alone for weeks on end, who are beaten, who have their entire life savings stolen.
For that matter, as people get older (or AD patients start to develop fragile skin), doctors actually recommend that they stop bathing so often. It isn't good for delicate skin. (And I wrote that before I read longyears' post, too.) Washing the hands to prevent the spread of infection, that's important. Washing the entire body is not.
People in Europe think Americans are insane for bathing so often.
And I'd be willing to bet there's not a single AD spouse here who hasn't missed a pill here and there. Heck, I'd be willing to bet that there isn't a single "healthy" spouse here who hasn't forgotten their own meds from time to time.
We try to strike a balance between letting our spouses do as much as they can, and protecting them from harm. It isn't easy and it doesn't always work. It's better, in my book, to try to give your husband as much independence as possible. Sometimes they run into trouble, but in the long run, it's better for their health and self-respect and dignity.
Some patients are much more cooperative than others, about bathing, about dressing, about sleeping, about taking meds, you name it. They do just fine with a routine for a while, and then things change, and you have to figure out how to adjust. That's the way it is. You do the best you can, and no one can ask more of you.
And with all due respect to Sally, when I have forgotten my pills, which means I've forgotten to monitor my husband's (caregiver dementia strikes again), I have not seen the slightest difference in his behavior. It probably depends on the patient, but most AD meds act in the long-term, and you won't notice minor fluctuations in when the pills are taken. Every last instruction sheet on every type of med I've seen explains what to do in the event you missed a pill -- and that includes non-dementia meds. They expect you to forget once in a while. So if you think your husband hasn't taken a pill when he should, check the instruction sheet that came with the pill as to when he should take the next one.
There is one woman (very much admired and respected) over on "the other site." She recommends keeping detailed records of important things, such as doctor appointments, changes in meds (when and why), etc. That way, if anyone ever questions your caregiving, you have records. I shall see if I can find a couple of her posts on the subject. She cares for her parents, and that can get a little dicier than caring for a husband ... for example, she keeps pretty detailed accounts of where their money goes, which can be important if someone really nuts decides to question what she's doing.
Anyway, you might calm down and relax if you kept records you could use to defend yourself in the HIGHLY unlikely event that you needed them. I do it myself, because my husband's children are bats out of h*ll, and I never know what they might pull.
My sincere thanks to everybody who responded to my problem. It just completely threw me to be called an inadequate caregiver. But I am getting over that. My husband is fairly happy, and his life is as peaceful and pleasant as I can make it. I think to him I’m a pretty good caregiver. ( I would like to invite the counselor to walk a couple of miles in my shoes, though, while I told her what she was doing wrong.)
The counselor I saw was at one of two places recommended to me by the local Alzheimer’s Association. I find that kind of scary.
Jan, the Alz Assoc doesn't screen doctors or counselors. In fact, I think they're probably forbidden to make recommendations about who is or is not good, or they might lose federal funding. They just give out a list of doctors/counselors who practice in the area. Maybe you could go to a few support group meetings and ask people there if they're seeing counselors they'd recommend.
I'd tell you to ask your doctor for a recommendation, but mine recommended a therapist who, shall we discretely say, did not work out...
OK, here is one of her posts. She has a relative who is in serious denial and also causes trouble all the time (in this case, her brother). So the following is pretty extreme, and you probably want to scale back a bit if you decide to keep records for your husband. But it has some good ideas:
My brother did not believe my mother had dementia or ANY changes. She initially was capable of fogging her behaviors and limitations when he came to visit, which was not often. It took almost two years for him to climb off his mountain of arrogance and judgment before he "believed". And that only after Mom finally went after him with a couple of bizarre verbal tirades.
Kathy T.'s advice re keeping records is extremely important. I did this myself in great detail.
I kept a running "log" on Mom in my computer. I listed care, doctor's appointments with outcomes, changes in Mom's cognition, function and behaviors, any negative interactions with brother, etc. I am amazed when I go back and read this now - how did I ever manage to take care of all that was on my plate? Don't know - we just do what we have to.
Because my brother did not believe my mother had any dementia, I obtained copies of the radiologist's interpretation of her brain scan and MRI and sent them to my brother.
I also got a note from the doctor with her diagnosis and mailed him a copy.
One of the most important things to do bar NONE, is to do a monthly Financial Accounting Report listing all account balances and income reports on one page; and then on subsequent pages, I displayed check numbers (or auto deposits, auto debits and transfers), amount of each check or other; and the last column was To/For which indicated to whom each check was written and for what.
If a check was written to me, I was careful to type in the details - "locking doorknob, prescriptions, incontinence supplies . . ."
I sent this financial report each month to each sibling so as to have everything transparent and NOT permitting any screwy questions.
I also keep a portable file box with labeled manila folders. I keep ALL bill and banking statements as well as receipts in the appropriate folders. At the end of each calendar year, I store the last year in a plastic storage box and begin anew.
This will cover you if anyone decides to question you or do an audit.
Until everything evened out, I would also write a pleasant non-threatening cover letter of "update" to be mailed with each month's Financial Accounting Report package.
I would not include too much info., but would relate Mom's condition and functioning, what the outcome was from a doctor's visit mentioning he ordered she no longer can drive, her disease is stable at this time (and list the existing negatives she still was experienceing), or her disease has advanced . . . etc. I would also list anything major which had occurred.
Then I would sign it with my name and title - "Johanna C., DPOA". Just to remind them.
There was a time or two my brother became quite obnoxious and demanding. I would have to tell him that I could appreciate his viewpoint, but that I felt this and so was best for mother AND as her DPOA, this is my final decision.
Cover yourself. Keep that journal log, keep those finances, keep ALL records. I kept copies of all negative test or radiology results. All was ready "just in case."
Eventually, after several years, Mom was so compromised he could no longer deny the overwhelming obvious. But it makes things SO difficult in the meantime....
It happens that I was just re-reading some of the stuff on bigtreemurphy.com, and I don't think Jan is TOTALLY unrealistic to worry about being reported. Look at the case studies reported in the "sometimes a bruise is just a bruise" section. The stories on bigtreemurphy are a few years old, so we'll hope that they aren't still happening, but it may be, Sunshyne, that the woman on the other site is right, to keep a log. Not that any of us us have TIME to do that!!
Jan, of course we all forget pills and don't bathe them daily, you're doing fine with your husband. But I'd be curious to see if any of you lurkers out there know of real instances (preferably not hearsay) where people have been reported for the way that they're treating an AZ patient.
I have a friend who had twin baby girls when they were living in a small apartment. The girls took turns crying, driving her, a first-time mother, to distraction of course, but she DID get reported to family services and had to go to court, etc. It CAN happen.
I think, Jan, that if I were you, I'd call the AZ association back and tell them exactly what happened, and give the name of the counselor. Or write them. That way you've got documentation of it.
briegull, several people on "the other site" have been reported to APS. In every case (at least, all of the ones who posted!!!), the report was NOT true and APS promptly apologized for the inconvenience. That, of course, doesn't make up for the stress of being interviewed. Usually, the person who made the report was some idiot relative with ulterior motives (wanting to get their hands on assets). Sometimes the report was lodged by friends or neighbors of the ADLO, after the delusional ADLO repeatedly told them that the caregiver was stealing from them or hitting them or keeping them locked up.
None of them had to go to court. The ADLO was obviously being cared for properly. APS is trained in what to look for, and the investigation never went beyond the original interview and maybe talking with the doctor(s). But it does help to have records, which can simplify the investigation.
Thanks for clarifying, Sunshyne. It would still be distressing to have to deal with, but if APS is trained properly now in connection with Az services, then there shouldn't be any problem.
Maybe I should also clarify that I reported the bats from h*ll to APS for emotional and financial elder abuse. The APS investigated me as well as checking into what I reported about the bats, since the bats, of course, not only said I was lying about them but made counter-claims against me. APS was stern, but professional and courteous, asked for any documentation I had, etc. They believed my version, and turned the matter over to the police, which didn't go very far since the DA didn't want to be bothered. (This is unfortunately quite common ... the police tend to stay out of it unless the ADLO is battered and starving.)
I did not hesitate to contact APS a second time when the bats acted up again. They "get it" and wanted to help me as much as possible. And having APS and police detectives snooping around did clip the bat wings a bit.
My goodness, I can't imagine being reported. My DH, who is a lamb, takes a shower once a week. First of all he's 85, skin is dry and he sits and sits, and sits, unless he is lying down. Once a week, I make up some event, we go out to dinner with friends, go to the doctor, something, and tell him it's shower and shave time. He then tells me he just took a shower yesterday, so I mark on the calandar when he took a shower last, and honestly, I am not religious about it. Sometimes he's cold (actually very often) sometimes I'll just give him a sponge bath (He hates that so it gets him to shower himself). PUleeese, he's 85, and doesn't sweat, Showering is just not that important. Pills, are another story, ony because he hides them on me if he doesn't want to take them, and he has trouble swallowing, so it takes him a long time and I just can't stand there handing them to him. And sometimes he 'accidently' knocks them on the floor, and I find them the next day. (thank goodness the dog doesn't find them). Let's be serious, we are taking care of a fully grown 2 year old. As long as he's fed, clean and more or less healthy we are doing very well. (and especially if we also find time to feed, wash and more or less take care of OUR OWN HEALTH TOO) BE REal, as the kids all say.