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Mom is receiving end of life care at home, she has a Foley catheter but still insists that she has to get up to pee. I understand that she has some dementia and forgets. The problem is my dad insists on giving this long drawn out description of the catheter and why she doesn't have to get up to pee, even shows her the bag with pee in it. I have explained over and over to my dad (who does not suffer from dementia) that she doesn't remember. He gets VERY irritated with her and often scolds her for forgetting. She has periods of severe restlessness (mostly at night) and of course asking to get up to pee is just part of that restlessness. She gets a small dose of lorazepam and morphine and this seems to calm her down IF she gets it before she gets too agitated. Dad won't give her the morphine at night even though 3 nurses have told him that is what she needs along with the lorazepam. What happens is he just gives her the lorazepam and complains it doesn't do anything and she is up all night and in turn he is up all night and then he has even less patients with her the next day. He also will bug her to eat until she finally yells at him "NO, I DON'T WANT ANYTHING" she only yells after he has asked her 5 -7 times over and over, then he scolds her for being "testy". I have explained to him that if she doesn't want food he should not bug her about it, "I know, I'm not bugging her, I'm just making sure she doesn't want something." is his reply. I'm there from 7AM until 8 or 9 PM everyday and I have gently explained these things over and over to him and it's like he's not listening. I am having a VERY hard time dealing with him. Getting my mom in and out of bed, emptying her catheter bag, cleaning her up and feeding her when she does want to eat is a breeze, even telling her for the 100th time that day that she has a catheter and doesn't have to get up to pee doesn't bother me. Dad on the other hand is driving me crazy! Any advice would be appreciated!

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Maybe Dad needs something for anxiety?
Being serious, not flippant.
He is dealing with depression and anxiety of his own,
and he has not reached acceptance of her disease.
Deep down, Dad is scared.

He keeps explaining because HE NEEDS her to
be able to remember, be able to understand -
he is hoping for and looking for something that
is not there anymore, but he wants it to be there.
I don't know if he will listen if you explain to him that
him re-explaining the catheter nightly to her or demanding
she eat - is stressful, distressing for her (which can make
her worse), and is stressful and distressing for him,
which is taxing on both of them.

Try to find alternatives for him.
If she wants to get up, have him tell her, she can
get up 'later on', or 'soon', or he has to get the
bathroom cleaned up for her, can she wait a bit.
That will usually pacify the patient.
If she is afraid she might wet the bed, the answer is,
that's ok if it happens, we have everything we need
right here, don't worry about it if you can't wait.
it's OK, don't worry
If she still feels she must get up, older people usually respect
'authority' so say things to her like The Doctor said we need
to wait or I have to check with The Nurse first and make sure
it's ok, I'll call them right now , I'm waiting for them to call
back etc

When Granddad got agitated and wanted to go look for
"Ma" (she passed away a few years earlier) the answer
was she was out with (one of their 5 adult children) at
the grocery store --- if he felt she was gone too long or it
was after dark the next answer was,
"You know how Ma & "pick a kid's name" are when
they go to the store, they just love to shop and shop and
lose track of time, you know how they are"
with a wink and a smile
then a distraction,
usually a snack, and the anxiety of needing to
look for Ma faded and Granddad was contented
once again
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Bless you for caring so much. I saw this with my grandparents and parents, the wife got sick and the husband refuses to accept it. In their generations the husband had a career and earned the income and wife cared for the husband, family, and home.

When the wife was no longer able to do her "job" the men fell apart, got sick, even gave up and died. So perhaps your dad is unable to acknowledge the fact that your mom is no longer able to take care of him.
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Imho, since you are there till 9:00 P.M., give her the morphine. Also, perhaps your dad should be tested for cognitive decline.
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It's great you are taking care of your mother. Considering all that you've posted about your father, I'd wonder if he may have some kind of cognitive decline himself. Often, someone's dementia is confused with stubbornness. Maybe, he's forgetting the instructions that you give or he has poor judgment and does it incorrectly. But, whatever the cause, to me, my mother would have the right to be as comfortable and unbothered as possible as she nears the end, with no nasty comments and improper handling on the meds. Of course, he's sad and anxious, but, she has a right to be in peace now.

I'd insist on transferring her to inhouse hospice care facility, stay in the house, but, have father move elsewhere for now or have him constantly monitored to ensure that he complies with instructions and stops saying inappropriate things to her. I'd explain the plan once more to ensure this happens and if he still refuses or is unable to comply, I'd take action. One way or the other, this would stop. PLUS, you don't need this extra stress. You are right on this and thank goodness for your mother you are proactive.
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Mrsricky Jun 2020
I agree completely BUT... a few years ago I insisted he and mom make out a will because my brother (a pedophile) and I don't speak. To be "fair" my father named me financial p.o.a. in the event of his incapacity and he named my brother as medical p.o.a. At the time I tried to explain that this was not the best course of action but dad insisted. There are days when I want to throw my hands up and say "It's not my responsibility!" and throw it in my brother's lap. Legally I would be in the right but my brother hasn't even called in a week. The last time he called all he could do was yell at my father for not calling him. I can't do that to my parents, no matter how frustrated I get. I have asked dad to talk to his attorney and have the medical p.o.a. changed to me so, if I need to, I can legally assist with dad's care. It's too late to change my mom's. Dad is acting as her p.o.a. now and if he was not able to do it, it would have to be my absent brother's responsibility.
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Either you or he needs to separate a bit. Get dad involved in some kind of activity (hard, I know, because of Covid). Maybe sorting through some things, organizing paper work, whatever. Or, you can just be there less often. Hire an aide, if you can or see if more hospice coverage can be arranged. Could an in-patient hospice placement help the situation? Your dad might lay off if he knows that staff is seeing to her toileting and feeding needs.
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Your hospice mental health social worker and the chaplain are your resources. Your father is facing "end of life" reality with his wife.
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Mrsricky Jun 2020
I am trying to get him to talk with them. He is VERY reluctant. I suggested maybe having the minister stop by for mom and dad just turned up his nose. The social worker is coming but dad said only once or twice a month. The nurse that comes and the cna can see that dad is not accepting her inevitable loss at all and are gently phrasing things to (hopefully) get him to accept it.
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If you are there until 9pm, give her the medications she needs before you leave. That might help for a better night.

Sometimes it is hard to understand her broken mind and some folks automatically try to get the confused person back to a point of understanding things logically. It won't happen. You may never get dad to understand that. He is also watching his wife wither away from him, so it is scary.

It is hard to watch both of them, from your own perspective. It is easier for me to tell you to have patience - but for you it is nearly impossible sometimes. Just keep doing the best you can do - that's really all any of us can advise you. This whole stage of life is very difficult.
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Mrsricky Jun 2020
Thank you! Thankfully I have my husband and my 2 kids (both adults) who know what's going on and will let me vent. My husband is so patient with me and is so understanding. My kids love Grammy and Grandpa very much but they are aware of the dynamics and will often get me laughing at how ridiculous the situation can be at times. My daughter, who is there to help out as much as possible, just keeps telling me she is sending me to a home as soon as possible.... I'm only 51 haha.
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First of all, if no one else has said it thank you for being involved with both parents. Since you are there in the evening, I would suggest giving the lorazepam and morphine. Perhaps your Dad would come around if he sees the positive results. . Your mom may be having bladder spasms due to the catheter. Have you discussed this with the hospice nurse? Has the hospice nurse or social worker explained to him the signs and symptoms of dying? It could be he doesn't understand or he is trying to control things he can't control. Anxiety? Fear? If he feels the need to offer her something to eat or drink since that is so ingrained in our society to nurture, allow him to offer once and then red8rect him. This is so hard on you both. Lean on the hospice social for support and suggestions to deal with him. Take care.
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Although I have no suggestions other than those already made, I can say that perhaps this is just dad. My YB doesn't get it either, and he is 10 years younger than me with no dementia! He all too often gives detailed responses and explanations to mom. I have tried in the past to suggest he keep the responses brief, because she won't remember what you just said and more than likely didn't even hear most of it because of her hearing loss (dementia plays a part too.) He's trying to deal with this the same way he raised his kids, long prattle to cover the issue, but that doesn't work with dementia!

In your 6/17 post it sounds like a little headway was made. It may work and if so perhaps over time working with him can reduce his overreactions. I will say that the Lorazepam should be administered before her anxiety starts for it to work best. We had to use that to deal with severe sun-downing due to a UTI. You indicate her anxiety seems to ramp up around 5-6pm, so perhaps give her the med around 4-430pm. In mom's case, it took about 15-20 minutes for it to kick in, so this would alleviate the signs before they start up. Thankfully our mother doesn't need this on a regular basis, but it WAS necessary during treatment for the UTI. Oddly the next UTIs have all presented as night-time bed wetting.

At least dad cares. It is hard for him to understand it all, so he gets frustrated. It is possible, as others said, that perhaps he is showing early signs of dementia, but unless he shows other signs, I would chalk it up to inexperience, inability to be more flexible and frustration that what he thinks is the right thing to do isn't working.

Hope you can continue whatever seemed to be working that day and that he can absorb some of it and adjust!
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I would have the clergyman come to give dad someone to talk to. I would request a mature male and ask that they just offer a shoulder at 1st. Maybe a manly breakfast meeting or coffee and start as a friend so that it isn't about mom dying, but about dad living and coping and then he can move into other areas.

I wouldn't ask dad for permission, I would just do this for him. If it doesn't work out at least you tried.

He is scared and watching his world fall apart in front of his eyes, he is trying to make things better the best way he can. My heart hurts for him. Wrap your arms around him and give him a big hug and tell him that you all will get through this together.
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I think your Dad is in panic mode, knowing that he is going to lose his wife soon. He wants to make things better, because that is what men do.
Perhaps a man in your family can take him out once in a while. You have my sympathies.
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Wow. Not much supportive assistance in that last post from Caradell. Regardless of whether you have been in hospice or not, give Mrsricky some credit for having a fully functioning brain - and heart - which is in need of positive thoughts and ideas right now not scolding. Everyone else's posts have been so kind...
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desert192 Jun 2020
While Caradell's answer is blunt - it doew raise an issue to be considered. My Mom was allergic to morphine - crazy episodes in hospital following surgeries - not due to surgery or even hospital - Morphine/ Percocet reactions. Had to be sure she never received any of the drugs in this family as normally sweet, docile lady would go ballastic on those. (At 84 KO'd 2 security officers, 4 nurses and was running down the hallway 1 day after open heart surgery - immediately after receiving Percocet - and had received morphine post surgery.) Morphine is for severe pain - which It doesn't seem to be the case here. Most of these drugs are given to keep the patient sedated (and less bother for the care giver ) Not to say they may not be necessary - but discuss they could be part of the problem - they certainly are no cure. Mom lived to almost 104 - those high power drugs were bad for her and I imagine many others.
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Hello,
I was on Hospice for 2 and 1/2 years myself! I have been off of Hospice now for over 2 years so I understand how it works vs how it should. The first thing I would like to say is that morphine is NOT what she should be given to help her sleep. Morphine and Roxenol are for severe pain and they slow down respiratory function making it difficult to breathe. The other thing I want you to think about is that your father is a man! Men are used to being able to fix things when they break! Like the car, lawn mower, and intervening in family squabbles and basically everything that comes with being the head of the family. They are used to being in control. Now that he is older, he has lost control to a large extent. His wife and the mother of his children is dying and not only can he not fix her, you and hospice have taken control away from him! There is no blame here! Except that you need to quit being so focussed on how all of this is affecting you and stop and think about how it's all affecting him! Be more patient! And pay attention to what medicines they are giving your mother! There's a lot of medications that are not supposed to be given to people with dementia or Alzheimer's or who are elderly! Please be mindful of the fact that your father is a man that is not used to talking about his true feelings and he is not ready to say goodbye yet! Just slow down and realize that you aren't the only one grieving! Hospice is about hastening death and btw I can tell you that Morphine is not a pleasant or comfortable way to die!
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Mrsricky Jun 2020
Thank you for making me feel selfish. I've literally given up my whole life to be there to help them. On his request I might add, and I wouldn't have it any other way. This post isn't about how this is affecting me, it's how it's affecting my mother and father! I was asking for help, not criticism. Thankfully there are far nicer people on here that have been far more helpful. I am acting on the advice of her doctor and the hospice nurse not someone who sounds very bitter.
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Catheters can stimulate the urge to urinate if the "balloon part" in riding against the bottom of the bladder. Try lubricating the area near her and advance it a little more into the bladder. Ask the doctor for prescription for Pyridium which helps with bladder spams and discomfort. Please note that this drug will make the urine a dark orange color.

Your father is having a hard time with your mom being on hospice in the home. It seems he is not getting enough rest. Maybe he needs to sleep in another room or a sitter needs to tend mom overnight so he can rest.

Develop a strategy for the food issue. He should offer food every 3 hours. If mom says she doesn't want anything, he should let it go and try again in 3 hours. This way he can feel he is being a good provider without irritating mom.

Again, I feel your father is having a difficult time coping with "hospice" as part of mom's care plan. It would be helpful for him to get some counselling as part of his coping with a difficult situation.
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My heart goes out to you because I've lived through a similar scenario. I think Countrymouse has the best advice. If you could get him to take a break away, while there is still time, it might do you all some good. If not, maybe schedule hospice visits in the evening or the end of their shift, if possible, so they can administer her medications?
I hired a private cna, out of my own pocket, to come in the evenings in the end. It was a great emotional support for me, more than anything else, because she didn't have the emotional baggage I had in dealing with my father-- so I had an ally in the room. It was in the evenings because by the end of the day, I was emotionally drained and had little moxie left to battle my controlling narcissistic father. If that's not possible for you, why not see if you can schedule your hospice visit for as late as possible.? Alternatively, why don't you just give her a dose of morphine when your dad is making her something to eat? There is no reason for her to suffer even one minute.
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I could have written this.. Except my Dad HAS alzhiemers. He's 88. It really sounds like your Dad has dementia.. Some aren't easily picked up even with an mri. My mum has Vas dem, she's 87 and it was her behaviour that clinched it, although more recent pictures make her illness clearer.
My mum has the catheter.. And she keeps asking to go through the night.. And my father gets furious so I've moved him into another bedroom. My mum in her last days and dad bothers the carers when they come to clean her up, he bothers me when I'm trying to deal with it and he goes off for walks and I've had to give him an ID bracelet but alarms on the doors are the next thing..
My mother is so quiet mostly and no trouble.
I try to give Dad things to do.. And I was told that he's terrified of losing my mum and half his behaviour is down to this. Doesn't help much though.. I'm really sorry I can't help but will watch this thread with interest to see if anyone has found a solution. Thinking of you.. I'm right there with you.
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It is Hard when you have a Bad Dad. But he Feels it is his Wife of his Life and wants to---Be Helpful. Be patient. When she Goes, who Knows....He will be Relying on you to care for him.
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You are there for over 12 hours every day. No wonder you're at your wits end! Just an idea. Would it be possible at this point to enlist all family members to help out? Could everyone do a 6 hour shift so someone is always there, 24 hours? (Husband, daughter, SIL?) Is your mother in hospice? If so are there nurses there, because they would be better at dispensing the correct medications.
Your parents have their relationship and there is no changing it at this point, even if the constant bickering is annoying. I wonder if there was another person around if possibly your father would actually calm down a bit?
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Find something for your dad to do outside of the home, day care, veterans club, senior center etc. Remember that your dad is also dealing with the list of who she was.
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Can you call dad's doctor and explain the situation? Dad really needs something to "take the edge off".

The fact that mom is becoming agitated at that time of day is called "sundowning". Please tell the hospice nurse about this and take her advice about additional medication for it.

It is a basic, fundamental human right to be able to determine ones bedtime (and rising time). Before we admitted mom to her NH, we assured ourselves that her desires would be honored. And they always were. Several places said "oh, all of our residents are gotten up between...". That was a non-starter for us.
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Maybe Dad needs something for his anxiety. Its not good for him to be this way. Yes, he may need a few days away.

As I read this I thought of my DH. He too is stubborn. Also, helpful when you don't want or need the help. When u do need him, he is nowhere around. I can see him continuing to ask me if I want something to eat and me finally getting mad and hollering at him. Then him saying I am testy. 😁
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Mrsricky Jun 2020
I know he does need something for anxiety but I also know he won't ask his doctor for anything. Monday things were really bad. I had to teach a webinar from 6-9 in the evening. It is between 5 and 6 that mom really starts getting agitated. My husband, my daughter, and son in law were here to help and they were all trying to appease my mom. Dad was just scolding her and telling her she couldn't go to bed. Mom was getting extremely agitated and was demanding that I come and put her to bed. I gave my class a break so I could put her to bed. Yesterday I talked with dad and told him that maybe we should just put mom to bed when she wants to go to bed. I asked him how he would feel if he wanted to go to bed and people wouldn't let him. I explained (again) that she is suffering from dementia and at this stage delirium is common as well. Last night was much better. He was working hard not to pester her and just support her. He gave her a bit of a hard time about going to bed at 6 but acquiesced pretty quickly. My daughter have her, her meds when she started getting agitated and they put her to bed soon after that. Dad wasn't thrilled but my husband just kept explaining that we didn't want her to get too agitated because that would mean more medication. After I completed my class last night I came downstairs to a pretty calm environment.
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The nurse gets it and seems to understand that he isn't letting go. She has explained it to him as well but he is very stubborn and will dig in his heels. The nurse and I have suggested that we have a local nondenominational minister come in. He doesn't like that idea. I think because having a minister come to see her would make her impending death more real maybe?
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What's the morphine for? Why is your father refusing to give it as directed?

Depending on how things are expected to go with your mother, I wonder if your father could safely go and stay with another (screened/quarantined) family member for a few days and get a proper rest. Apart from his having some unbroken nights' sleep, it would also be a chance for you to get in there and put in place a firm, fixed schedule for him to come back to.

It's ironic, really - your mother isn't listening to him, and he isn't listening to you! Two peas in a pod! On the other hand: just as an exercise, something to try - what about responding to him as you wish he would respond to your mother? Nod and smile, agree that it's annoying, sigh and shake your head - but give up on the explaining! :)

I feel for you about how wearing and frustrating their exchanges must be, though. I had two clients in one, a married couple, each as hopeless as the other when it came to following directions, and each constantly correcting the other - by the time I got out of their house my head was spinning.

Do remember to praise him for what he's doing, by the way. He may not be Caregiver of the Year in terms of skill and understanding, but he is working his socks off to take care of her. God bless all of you.
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Mrsricky Jun 2020
They are 2 peas in a pod. They have been married for 62 years and I believe it has been a power struggle the whole time. He is trying to take care of her and I recognize that he must be terribly stressed and grief stricken right now. I believe he has suffered with anxiety his whole life and now has real signs of OCD so with the added stress he is just beside himself. He wouldn't leave the house or mom. He doesn't even want me to spend the night. I think that is a fantastic idea, him leaving for a few days, and I think he needs it but making it happen is another story.
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When I read this what came to mind is how much anxiety your father must be having right now and how painful it is to see his wife slipping away. It must be agonizing for him and he is just at his wits end. Of course it is difficult for you too. Maybe when we are older and closer to death the process becomes more real and heightened. I’m just speculating. Can you talk to your dad about what he is going through? How he is feeling? Hang in there. It sounds like you are honoring your mother in a wonderful way.
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Pasa18 Jun 2020
I think MD is correct. He doesn't want to let go. Can you have the hospice staff, the chaplain or nurse, take him aside and help guide him through his grief. While focusing on 'doing', don't forget to take time to be present for each other. Mom is on home hospice and it's easy I find to get lost in what needs to be done.
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