Tug of War in heart and mind. What do you think?
So does anyone else have the "tug of war" I am feeling? Dad's doctor says he needs to be somewhere that will purposefully engage him in activities throughout the day. Not just meal time. Not just suggesting he come to Bingo or chair excercise but heavy encouragement, "come on let's go together", "we need to clean your room so you might as well come to this" (dementia lying) kind of tactics. Sounds great. Also sounds sad, lonely, we are absent because we can't live there with him. (we=wife, adult children). Where Mom and Dad are now; he hates. No encouragement of activity. It is an independent living apartment with my mom. She will go do things but he won't. She is fully independent; he is not. She is his full time care-taker. He does all of his own hygiene ADLs. But she does everything else. She says they are fine and she can do this. He wants to move home. If he was home (right next door to me) we could engage him more than he is now. But would he participate? When they were in their home, he would come over for dinner and then leave because "I don't feel good", "the dog needs me", "It's too loud in here", etc. If he comes over now, he sits in a chair with a hoodie on and pulls the hood down over his eyes and doesn't engage. But still....the tug of war: making him someone else's responsibility, guilt over not taking care of him, we want to spend time with him, we want to hear his stories, we want him here, he won't engage. He will definitely be angry if we move him into full time care (this is NOT going to go well...his anger at moving may cause him to completely disengage with all of us), mom will loose some of her purpose, she will feel guilt (she is a part of the generation who believes duty is way more important than self and your engaging in that "duty" shows your level of love), How do you resolve your tugs of war? What helped you release the guilt or sorrow and be okay? Check on the family care-takers...we are not okay.
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You are taking care of him the best way you know how at this time.
It would help if you told us if your dad has been diagnosed with dementia. This is important to know to determine how best to proceed.
When a person loses what they are familiar with, they get scared and express anger (to you / whoever is the primary target caring for the person).
When a person loses their independence as they perceive it was and how they have or are losting it now, they get scared - and react / act out.
Your dad sounds like he is going through either an awareness of losing his independence or is confused due to dementia (his brain changes) and responding by lashing out ... (in his mind, self-protection, standing up for what he wants and feels he needs, deserves).
He may need some meditation to stabilize (as) mentally / psychologically as it sounds like he is very depressed (not wanting to / willing to do anything to help himself (socialize, activities).
Try getting a volunteer or nursing student or even a care provider in to help with socialization. Say it is a friend of yours visiting from out of town when you introduce them. Be sure that person is qualified / experienced / able to provide some stimulation
* showing travel videos
* an artist who sketches while talking to your dad
* interactive 'games' if he can play (checkers?)
* sharing 'war' stories).
* he may respond 'better' to touch so consider a massage student (give a hand, foot, or shoulder massage). Getting the oxytocin activated is important (the feel good hormone).
Any way in to his 'world' that may click with feeling a connection with someone else. Even having the skills to encourage your dad to talk (an active listener) which is important to understand where he is at inside his brain / world.
Always offer H O P E . . . Meaning never tell him a definite yes or no. Everything is in process or possible. He needs this to hang on emotionally and psychologically.
Always say, I'm checking on the possibility of ...
Painters or the electrician is coming over to the house (for repairs)
The house has structural issues that I need to take care of before you move back in ...
Offer reflective listening. Do not dismiss his feelings.
"I hear you saying you feel xxx"
Let him know he matters 'enough' to you to listen and take him seriously.
He needs / will appreciate this re-assurance, even if he isn't aware of it.
Change is hard for anyone.
It is complex with dementia or in transition of losing brain functioning.
Finding that balance between compassion and doing what is needed for his (their) welfare is the key - and certainly not easy. It is trial by error.
If I were you, I'd talk to his MD 'more' and ascertain exactly what is going on (in his brain chemistry)
Perhaps hire a social worker to track changes / work with him and the family unit.
I would definitely be aware of what your mom says she can do (because she wants to) and the toll it is and will continue to take on her by doing all she is doing for him. Perhaps consider getting a caregiver in to help her.
Get her out of the house, even if he won't get up and join her.
She needs support to manage her own abilities / energy.
She will likely continue / end up doing much for him than is healthy for her to do, which is understandable she'd want to - being a loving wife.
Get her a massage or do some massage yourself.
She needs down time and time to relax and just 'be.'
Gena / Touch Matters
Dad's doc probably has not sat in on a Bingo game; some residents can be "cut throat" especially if they feel they were cheated out of a win.
What to insist upon vs when to leave him alone. That is the conundrum. Unless there were risks involved, I generally ended up deciding on the “leave him be” option. I figured give him what agency I could if no one was being hurt.
It’s interesting that your dad was a physician, ran a senior group and was a chaplain in a hospital. I’m guessing in those days, he encountered grouchy old folks with dementia. Do you remember anything about his reactions then?
Give yourself grace. Go with what your heart says in the end rather than your head. He’s not going to get better. ❤️🩹
My Mom did well in Assisted Living. She had freedom to walk around inside the facility. She liked the entertainment and the parties but...she never participated in the activities. Her Dementia had gotten to the point she could not read. Her short-term memory made it impossible to learn something new. She didn't play cards, games or crafts before, why would she want to now? The doctor is in LaLa land. Activities are there for the residents if they want to participate but by law, residents can't be forced to do anything they don't want to.
Its so hard to watch a parents decline from a Dementia. It robs them of so much and you must understand the process. The father you knew is not coming back. Little by little his brain is dying. All you can do is be patient and love him.
Knowing that, moving him anywhere is not going to change this or his reactions. If he was pulling his hoodie over his head back then, he is worse now. They never get better. I read something on this site written by a man with dementia who was still early enough that he was able to express his own situation. He talked about being agitated by the Christmas decorations and not wanting to be surrounded by a lot of people because it was overwhelming to him. Your dad might feel the same way. Sure, you want to spend time with him and hear his stories. Perhaps this has to happen on a more one on one basis now, not large family groups.
I don't think anyone is trying to say your dad has a bad character or is a bad guy. We deal with this all the time, though, where well meaning relatives want to "make dad happy" and there just really isn't a way to do that. They do become grumpy old men, and I totally understand why that would happen. I think you might be grumpy too, ESPECIALLY if you had a life where you volunteered and had meaningful work and family, etc, and now have this terrible decline. Medication might help him, but it might not bring him out of his shell, so to speak.
I don't know if you were there with the dr when they suggested dragging him to activities, so maybe the nuance was lost. But it sounds like maybe the dr was trying to tell you all that it is time for him to have a higher level of care. Even then, he might not engage, though, and that is his choice, always. I wonder if the dr was a geriatrician or not.
I also don't know if you have POA, giving you the actual responsibility for where your parents are living or if you just feel a sense of responsibility because you are their child and want the best for them. But at this point you will have to come to accept that there isn't much you can do to make your parents happy when they are facing losses like this. You can do your best to make sure they are safe, and that's about it. I would certainly look into getting some support for your mom, whether she feels a duty to your dad to be his full time caregiver or not. You could let her know that 40% of caregivers die before their charges, were that to happen your dad would end up in care anyway. You want the two of them around as long as possible, and it would be a great thing if she would accept some help taking care of dad.
Literally this past hour she wandered into my backyard and fell, doing a face plant and smashing her sunglassed into her nose and bridge, pushing up the skin on her arm (again), and it looked like a crime scene, then getting mad because of the "uneven yard". It's the yard's fault that she fell. She didn't have her phone on her, nor her hearing aids in. I was on the one side of my house outside and she was on the other. If my neighbor hadn't seen her who knows how long she would have laid there. She is getting closer and closer to facility care because she is falling more and more due to poor judgment and bad balance.
Do not romanticize your Dad living next door. He will still be an unhappy elder AND he will be ungrateful for everything you and your Mom do for him. He is right now who he will remain until he passes. It's not lack of activities that's causing him to be a curmudgeon, it's his cognitive decline. It's not fixable. And you will burn out orbiting around him in so many thankless ways.
Maybe consider hiring a male companion aid, if you can find one. Someone to take him out or hang out with him a few days a week. I hired one for my Aunts and they adored her. Had her for 6 years, 5 days a week.
Yes, you have sorrow and grief, but not guilt. You didn't make him old and you can't fix it. Most of us will get to be his age -- it's just life. Support your Mom so she doesn't burn out and work on having peace in your heart that it is what it is.
Very well said.
Your good intentions won’t fix him.
You should have no guilt about not taking care of him. You don't need to. And when the time comes that he needs more care than your mom can manage, they can move to an assisted living apartment, or dad can be moved to a skilled nursing facility. It sounds like they are fine right now. Stop worrying and trying to change it. Any doctor suggesting he should be forced into activities he has no wish to participate in, evidently doesn't know your dad very well.
Dad's going to be a full-time job soon. What doctor is perhaps hinting is that the "somewhere" dad should be is in a facility where they do encourage everyone to join in and care is 24/7 by shifts of aides. My husband is in one of those, and it's wonderful. You at home could not reach the level of care that the doctor is recommending. You're not a professional dementia caregiver. Sorry, I don't wish to insult you, but you're not.
There's a lot more to it than you know, such as having no life of your own because dad's starting to wander and you can't get him to ride in the car and you wish you could freely come and go from your home as you used to do and now you resent dad but you have to keep trudging on though you're getting older and grayer by the minute plus you're no longer sure you'll outlive dad. Who is miserable anyway. And mom is beside herself for some reason that you need to find out, so you've got parent issues on two fronts. This is when you start tearing your hair out and hating everyone. (Been there done that myself.)
Stay out of what's happening now. Just chill. I have an idea that the facility where he and mom are in "independent" living will eventually recommend that dad go to memory care. Again, let mom handle it. There's such a thing as overhelpingness, which covers up the true problems and does no one any good. Good luck with developing a more distant approach!
So I'm with MG8522 below, and say that your parents now need to move into an assisted living facility that has continuous care into memory care for your dad,and where your mom can stay as busy as she'd like, but also have the needed care for her husband, your dad. It's a win win all the way around.
It sounds like moving him back home would not change his attitude, but would deprive your mother of her independence and social life. That's not fair to her. You say you want to spend time with him and want to hear his stories, but guess what? That's not what he wants. Let him be who he is.
Is it possible for them both to move together to Assisted Living? That way they would still be together and your mother would still have her social life, but it would lighten her load on the other things such as meals and housekeeping. And as their physical needs increase, the help would already be in place.
I do suggest you try an anti-depressant for him. It wouldn't turn him into a gregarious party animal, but it could make him less gloomy and complaining.
Don't feel guilty over not being able to change who your father is.