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!
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.
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. 😁
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.
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?
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.
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.
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.
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!
Perhaps a man in your family can take him out once in a while. You have my sympathies.
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.
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!
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.
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.
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.
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