My father-in-law is 86, lives with us, has some neuropathy in his legs and heart problems, with new valve, several angioplasties and coronary by-passes. He is on numerous medications, a couple being strong diuretics. He is in the forgetful mid-stages of AD. He used to be the sweetest, most wonderful man on the planet, but since losing his wife three years ago, has been on a lethargic pitty-pot. Two weeks ago, he completely failed the driving test, so now we chauffer him everywhere.
We cared for his wife for 6 years until CAA (form of dementia) took her life Six months after she died, my mother had a major AD meltdown, so we brought her to live with us until she passed away in late 2010. Our daughter and 2 year old grandson currently live with us while their home is being finished. We care for our grandson while she works. We have, and have had, our hands and house full of people to care for the past few years.
Having said that, my issue of the day is my father-in-law’s urinary incontinence due to the diuretics. I realize it is very difficult for him when the urge hits and speed is of the essence. However, it seems he can not hit the toilet either and pees all over the floor. Of course, he leaves it for us to clean up. Most of the time, he doesn’t completely close the bathroom door, so I know he only rinses his hands and doesn’t use soap to wash, then comes in the kitchen to handle things. It makes me gag. I spray everything 20 times a day with Lysol and alcohol.
He wets himself and doesn’t change clothes, putting the same things on day after day. When we have guests, or are out with people, often times he smells and I just cringe. Even when my husband lays out clean outfits, he will not put the clean ones on because it is too much effort to transfer the belt and pocket contents. So, he smells and IMHO, it is extremely unsanitary. Unfortunately, we don’t want our grandson close to this “dirty old man” and it hurts us all. Thankfully, our home has 5 bedrooms and 6 bathrooms, but two bathrooms, his and one by the garage, are totally unusable due to this man. I have demanded the powder room be completely off limits to everyone in the house incase someone stops over I will, at least, have one bathroom that I can count on being clean for them to use. We live in the country and when he is outside and in a hurry, he pees by the garage or wherever. When we go somewhere, he has my husband stop so he can pee alongside the road. He went with us to pick up a swing set for my grandson and he peed in the woods by their home. It is humiliating.
I find all of this nauseating, disgusting and embarrassing. My 95 yr old mother had her issues and I did my share of cleaning up after her, but she willingly wore Depends and was very, very concerned about keeping herself and her environment clean. Even during her final days, in the last stages of AD, she would try to get to the bathroom. We also dealt with urinary incontinence with my mother-in-law, so I am not new to these issues.
I need HELP dealing with my father-in-law and his deplorable actions. I’m not comfortable dealing with him, I have served my time in clean up L, but my husband doesn’t keep on top of it like he needs to because he is frustrated with the mess, as well. Our home smells and I cringe every time he sits on the furniture. I actually bought a new dinette set with leather chairs to keep him off the fabric, but I can’t buy all leather furniture or put plastic on everything, we need to live a life too. When my husband tells my f-i-L he needs to wear Depends and put on clean clothes, he gets defensive and tells us our noses are too sensitive and that we are over reacting. It is beyond repulsive and a health issue, especially with our grandson living with us. My husband has talked to the doctor and he doesn’t offer much help because of the strength of the necessary diuretics.
I am so frustrated and at my wits end. I love this man, but it is getting to the point I can’t even look at him and being civil is becoming harder and harder. I understand with the medications, trouble walking and AD thinking, it is difficult for him to get to the bathroom in time, but there HAS to be an answer other than just watching my beautiful home ruined and everyone’s health on the line because this man does not have enough pride left to care for his personal issues. Sending him to a care facility is not an option as we have committed to keeping our parents with us and he is still cognizant enough to be devastated if we sent away, we can’t do that to him. He never, ever wanted that to happen to himself or any of his family and calls nursing homes “places of throwaway society”. I can’t imagine we are the only ones facing this issue and I am hoping someone will have suggestions how we can deal with my father-in-law and his repulsive behavior. Thank you for letting me vent.
The use of urinals (with lids) is very helpful at our house. It's ok with me if Dad doesn't empty them, just put the lid on the urinal at his bedside. Less chance of his spilling when he tries to empty it himself.
For hubby, I have him use the urinal in the walk-in shower so I can wash everything down easily. I also keep bottles of hand sanitizer (pump dispenser) on every counter in the house and they are more likely to use it. Also, I can joke about keeping the flu germs away and put some on their hands. Then it's not a fight about urine.
I've also removed every carpet and rug in the house. They were stained and had residual smells. Also removed Dad's mattress, got him a new one with a good plasatic cover on 6 sides. Removed all furniture that was stained with urine. All current furniture is waterproof or he doesn't sit on it (not difficult since he has his favorite in each room).
But most of all, we have a family living agreement (not written, but it could be). The items that we agreed upon were discussed in a non-contentious discussion. ("Yes, Dad, I have an overly sensitive nose, so you can imagine how hard this is for me.). Dad didn't like using Depends, he thought he only needed shields inside his underwear. But now he wears Depends. And I agreed to go to Walmart at least once a week.
And as far as dirty clothes, i gather them up after Dad puts his pajamas on.
Finally, could your FIL benefit from an antidepressant? His lethargy could be a symptom of depression.
Blessings for all that you do,
Jamie
Well, daddy said, he'll do everything I want, and he'll even keep the room neat, and blah blah blah. All I could hope for is that he might make a conscious change for a day or so. But really I feel that his answer was just the yes ma'am answer and now he feels exactly how I don't want him to feel. That he no longer is in charge of his own life. I hate that. But dad goes to a senior center and I am so afraid that he'll pick up something that he won't be able to get rid of because of his unsanitary ways. Mind you he was NOT like this until the last 5 or 6 yrs. I feel terrible and I suppose juggling & jumping around him using gloves & wipes and doing things FOR him can help somewhat but he's a healthy man thank god and I can't see me being his shadow for the next 10 - 15 yrs. In the back of my mind, after reading all these letters ... is the fear that a switch will shut in my own brain one day and I may be exactly the same way. I would hope not. I hope I follow my grandma, aunt, mother .... but who knows. Who knows WHY this happens. I do not have the financial ability to hire any type of professional aide to help with washing etc. Although it would be nice to be able to have someone else chase him and keep our environment and daddy, safe and clean .... most people are not equipped with that luxury. OK, that's my vent. Hope everyone has a better day than yesterday!!
Do you have a wife? Anyone else living in the home? (Just trying to get a full picture.)
Your mother has dementia, or some other damage to her brain. Peeing all over the house is not normal behavior.
My husband knew who everyone was until the day he died, 10 years after diagnosis with dementia. He was always able to have a conversation. Those are not signs someone does not have dementia. With or without an official diagnosis, assume your mother has mental impairment. Stop repeating yourself to her. She is not capable of reasoning. Even if she understands you and agrees with you when you have these discussions that has no impact on her later behavior (as you have seen.) Stop beating your head against the wall. She is not going to learn from your lectures.
Here are things I think you should consider very seriously and very soon:
1. Take her to a geriatrician to whom you have sent a note about Mother's behavior. Don't clean Mom up first. Take her in in her usual state of lack on cleanliness.
2. Hire a caregiver to be with her from the time you go to bed until you wake up. You mother cannot be left on her own while everyone is sleeping.
3. (Actually, this should probably come first) STOP that woman from driving!! She simply does not have the judgement and brain power. This is not just about her safety but that of others on the road. Allowing her to drive is irresponsible.
4. Bring in a bath aide. This person comes in once a week and helps Mother shower. No discussions, no arguments, just come along, dear and we'll get you all nice and fresh. (Sometimes loved ones behave better for an outside than for family.)
5. Begin the process of looking for a suitable care center.
The house is destroyed. Yes, you have come to take her behavior for granted. It is NOT normal. I think you as a caregiver are in way over your head! That is NOT a criticism. Bless you for loving your parents and trying to do your best by them. But persons with dementia don't come with an operator's guide or a training manual. This has gotten way out of hand and you need to start to rein it in, for everyone's sake.
Please consider looking into getting a caregiver in the home. You can initally contact your Area Agency on Aging to see if your family member qualifies for financial assistance based on medical need. Otherwise, there are agencies ready to assist with a private pay option. They do not have to qualify for hospice at all to receive this care. Just one word of caution-ask the agency if their workers are bonded and insured, as well as FBI and backgroundchecked/drug screened. The only way to go with that, IMO.
I did place a chair in the bathroom with a thick pad of clean towels on the seat. I keep all his combs and such, cleaned and laid out. ( I cannot even get him to comb his hair most days ) . He did agree to try these disposable wipes to clean with and body wash that does not have to be rinsed. My husband has offered many times to help him, but my fil always says he is too tired/too sick to change.
We have even had to tell him that social services will investigate, if he does not take better care of himself. He, too has incontinenet issues ( not too severe yet, but very noticable ) and smells. He also chews tobacco and drinks everynight. Interesting to note that he always manages to make several mixed drinks everynight, but cannot be bothered to clean himself.
Every week , I remind him, it's time to change his linens and that I will not do that until he washes up and changes his clothes. ( he sleeps in his clothes too ) I always put two piddle pads between each layer of sheet ( i don't even think he notices ) . I usually have to begin the reminder a couple of days before. It is a constant issue and he never changes voluntarily. I know it gets disgusting. I have had to be a little stern at times because he just starts to smell like and look like a bum on the street. His bed is in the living room, so he never sits any where else, thank god and he has his own bathroom.
It's just one of those things that you and your husband have to be very consistant about and keep reminding him.
I do place either bowls of unused coffee grounds or vinegar on white bread ( in a bowl ) to absorb odors. It does help. As far as your fil in the kitchen, I keep my fil's utensils and plates, bowls seperate and any type of snack, such as chips or fruit, goes into it's own container. I seperate what he touches and eats from my own. I have never seen him wash his hands, ever. I know he does not use soap, because he has had the same bar in his bathroom for over a year.
We are at our witts end, but are in the process of getting either pallative/hospice to help with the bathing and changing. The man has not been in a bath/shower for five years, just takes a weekly birdbath!
When he does clean up, I always compliment him and reaffirm that I know he feels better.
Good luck, and no, you did not sound too harsh. It is a difficult situation and you are doing a wonderful thing!!!
I am a retired nurse and, usually, I can keep a pretty understanding and positive outlook, but for the past 20 years, starting with my sister-in-law being diagnosed and passing away from ovarian cancer, we have been dealing with and directly caring for immediate family members major health issues 24 hours a day and, quite frankly, I get a titch burned at times. I also have Grave’s disease and fibromyalgia, so most days are rather exhausting and taxing. Again, I am so sorry for sounding awful and like I don’t care, because believe me I do care very, very deeply for the comfort and happiness of my entire family.
Next, I want to thank you, Jeanne, for your fantastic and well written response. It is gratefully appreciated and I will see if we can give the urinal a try. Not sure we will get any further with it than the Depends, but, I have learned each day brings a different sunshine. :-) I always carry hand sanitizer wipes in my car and I will have to stock the other one with same. When my mother was with us, I did have an “emergency” bag with me at all times. I will offer your other suggestions to my husband and see if we can revisit some again, as well as, implement the new ones. They were excellent.
As you well understand, there are times even the best laid plans go out the window with AD patients. All we can do is continue to share our experiences, taking deep, deep breaths (outside in the fresh air), keep putting the smiles back on our faces, putting one foot in front of the other a nanosecond at a time and trying again and again because we do love and understand this is not their fault and they certainly wouldn’t be like this either…………….if they had a choice. It is a heartbreaking illness for everyone.
Hugs and love to all of you who are walking the same mile as my shoes!
My suggestions are on a practical level (although I'm guessing that is not where most of the distress is).
1. Men have it pretty easy in one sense -- a urinal is a good alternative. We always have one in the car, along with hand wipes in singles packages. When hubby is weak or sick, there is one next to the bed, too.
2. When laying out his clothes for the next day, transfer items to the new pockets and thread a belt through the loops. (Own two belts the same, so you needn't wait for the one he is wearing.)
3. Better yet, encourage pants without belts, like sweat pants or cotton knits or short with elastic waists, etc. Much easier and quicker to manage in the bathroom.
4. If you typically stay up later than he does, remove his dirty clothes from his room after he is sleeping, and return them only after they are laundered.
5. When he first developed dementia my husband wasn't very sanitary in the hand-washing department. I switched from using hand towel to having big baskets of wash clothes and a small hamper in each bathroom. These are single-use hand towels. As a bonus, folding the colorful little towels with their interesting texture has become a standard activity for my husband. It is a way he can see that he is contributing to the household.
6. Disposable pads in regular underwear may be more acceptable to him than full incontinence pants. In my experience the underwear nearly always has to be changed along with the pad, but if caught quickly the outer garmet is spared. If this might seems more dignified, it is worth a shot.
7. It is well and truly Hubby's turn to take reminder duty and cleanup duty. Even if he is frustrated. Even if he doesn't want to. Sorry, your turn, Dear.
8. You can set some rules and gently but firmly enforce them. He must wear clean clothes each day. He must change his clothes promptly if he soils them.
And a little advice outside of the practical realm: Try not to think of this in terms of FIL not having enough pride to keep himself clean. This man has tangles and plaques in his brain that prevent him from thinking and functioning as he once did. As you stated so well, this isn't his fault. Think of it as not having enough functioning brain cells to remember the importance of keeping himself clean. That won't solve any of the practical aspects, but it might make being civil just a tad easier.
You and your husband have been/are wonderful, caring adult children. Bless you. I hope you find some relief for this very vexing problem.