Patience and Self-control

Comrade

I am angry with myself for losing patience with both Sue and myself. It feels like a small explosion in my head, even though I am strong 95% of the time.

This is not comfortable to see myself like this and definitely not comforting for Sue's stability and security. She reacts and we both feel worse.

It is embarrassing and scary to admit imperfection. Being Sue's caregiver for the last 3 years, I see her disease rob her of intellect, emotional stability and more. I also see my life being contained by the disease, and not only feel her fear, but my own. My patience falls apart and I say things out of frustration, but never anger.

I do attend  a caregiver Zoom meeting each week, but it is closely monitored by Sue. It scares her and cannot find a diversion or person to help occupy her during this hour.

Yes, I am venting and no, my affection and care does not wane for a moment. But I am tired.

I go to the gym each morning at 5:30, when I find Sue soundly asleep. Once home, the routine begins again. This is hell for both of us and cannot express my sadness enough, about her being robbed each day from herself and the toll it is taking.

Sometimes if feels indefensible having these feelings, but recognize I am only human and becoming a darn* good chef and housekeeper. 

I just vented and don't expect any commentary. My typing was therapeutic.

 

Mint

Understand.

ButterflyWings

Reading this is therapeutic too. Thank you for sharing. I have been raising my voice and snapping back at my DH’s snarkiness the last week or so, and feeling terrible afterward. Including a headache sometimes, so I know it is physically unhealthy for me.

It is such a blessing that DH not only does not remember the exchange after a few minutes. There is that so I am grateful but still don’t want to react like that. One weird but consistent gift in our situation, when I do lose my patience and show it,  he literally assigns that behavior to an imaginary other lady or guy he swears was just in our house, giving him what for. Tells me all about it, I empathize and validate his feelings, and it is over. A couple of days ago I came back into the room after a spat (involving hygiene noncompliance) and he even asked me “did she leave yet?”.  I could truthfully say “yes, I told her she needed to be nice, and sent her on her way.”

Anyway, do know you’re not alone. I can relate. I hope you can forgive yourself for being human on this challenging journey. Wishing you peace and smoother sailing as often as possible.

Tfreedz

This whole forum is like free therapy! Being able to vent to others who get it and read that others are dealing with similar issue has been such a relief. I don’t think anyone can be perfectly patient and kind all the time, even if we want to be. We need to forgive ourselves for our shortcomings and this is easier said than done. 

Comrade, like Butterfly said our LO’s have likely already forgotten about our mishap ...long before we do. Tomorrow is another day, no one doubts the love and affection you have for Sue so try to give yourself a pass.

billS

Comrade I agree about writing your feelings being therapeutic, writing it out really helps me understand my feelings. And more so when the feedback from others comes. 

I can completely relate to your discomfort at getting impatient with your wife. I lose patience daily, but understand that it is a safety valve, like when your car radiator overheats and overflows out the cap instead of exploding. And in my case at least, as ButterflyWings said, after a few minutes they have forgotten. So although I try mightily to keep patient, I know when I need to blow off steam to keep myself from exploding. Since she forgets so soon I feel like it's a freebie, I get to lower my stress level by blowing my top with seemingly no lasting harm. I still don't like doing it and wish I could be infinitely patient. Maybe in another life....

Just Ro

My DH is gone now, but I used to pray for patience everyday. Every single day. I’m not sure if God was listening, though.

Buggsroo

I get mad at my husband and then feel awful for losing my temper. I have to go out, walk and get fresh air, that keeps me sane. It is heartbreaking to see one’s loved one fading away, just a shell left. It’s not bloody fair.

Sometimes I have to pretend he is a stranger that I am helping, that works for awhile. The thing is my husband forgets it all but I am left with the memory of how I behaved. My iPhone and the music on it plus a long walk helps a lot. 

It’s good you can go to the gym, that is great, a lifesaver actually. Good luck, we caregivers need to remember we are human and under a lot of stress.

Elshack

I know my DH forgets my comments when I am frustrated but I feel bad afterward and really have to work on being patient. He is 91 and I am 82 and on Thursday I had an eye injection for wet macular degeneration. This caretaking job is difficult enough but when one has other physical problems it make it that much more difficult as everyone here on this board knows. 

I actually told him I was having a breakdown since he was  spitting out his meds in a napkin and they are important to take. ( memory pill, blood pressure pill, vitamins and pills for Crohn's disease. ) He looked at me and said, " Am I am pain in the a**? " and I actually said yes! 

When it was time to get him ready for bed, he went into the kitchen and was organizing the soup cans ...moving them around. I guess that is textbook behavior for dementia patients. 

I feel comfortable bearing my soul as I know others will understand.  This week he had bathroom accidents 3x and that necessitated a cleanup of the bathroom and clothes and putting him in the shower. I wonder how long I can do this ( his brain surgery was 3 and 1/2 yrs ago ) but then I know when I no longer have to do this that means he will be gone. He thankfully does not wander so I get my massage 1x a month ( I have fibromyalgia ) and can get a manicure and hair cut and those activities keep me sane.

Grandx7

It’s getting more and more difficult to not take what my DH says personally, but it sure sounds personal.  It’s directed at me as I’m the only one in the house most of the time. He gets angry at me for most everything that he can’t remember and it hurts my heart what he must have taking place inside his head! It must be hell.  But then I hope and wonder if maybe he’s far enough along that he isn’t aware of what is happening.  What a cruel disease- he was such a brilliant man that was on top of his game- mentally and socially!  He’s just fading in front of us.  I told him I’d always take care of him and now I pray for patience and God’s grace and help in following through with my promise.  Occasionally, he has a lucid moment and apologizes for how he treats me.  I don’t engage much other than to say thank you and that I love him.  I’ve leaned there is. I use going into details of how mean he is as I know it’s not something he can control. I’m blessed that it’s only verbally and that we have wonderful family members to help support me. 

I’ll accept any ideas anyone might have and I’ll try and implement them.  

Comrade

Thank you everyone for your understanding and compassionate comments. 

I worried about posting my thoughts and being seen as selfish. However, I think I have and continue to be relentless toward caregiving Sue and to express my feelings.

This disease is more cruel than any scene in an imaginary "Game of Thrones" or other movie storyline. It is real and it has an affect on everyone associated and near.

On my Zoom caregiver call, there was a man who recently started caregiving his mom. He complained that he only had 8 hours on Saturday to himself. I was irritated that he complained about the generous gift of time he enjoyed.

I realized that this journey is not a competition for caregiving stardom or attention. It means something different to each of us, with a familiar goal.

Expressing the same gratitudes to each other can be just as healing.

Michael Ellenbogen

For all of you who think they forget how can you really be sure of that?

Tfreedz

Hi Michael, I’m sure no one can be 100% certain. 

In my case after I have calmed down and apologized for ‘snapping’ at her, the look of pure confusion on my mom’s face says a lot. She verbally says she doesn’t know what I mean. I do know my mom and how she was before dementia hit her, she loved to ‘talk things through’ when we had issues. I do know that she remembers the emotions if we have a fall out. When my husband comes how from work, after a problem, and asks her how her day was, she will say, “Not too good, but I’m not sure why, nothing has happened.” I know she is not trying to be polite by not mentioning it since in the past she was very clear on her feelings and emotions and the reasons for them.

When my mom had sepsis and pneumonia in her own home, she refused medical intervention. She was furious with me for calling an ambulance even though she could barely move, she wanted to disown me and it was an awful experience. When I followed the ambulance to the hospital I was crying thinking of how angry she was at me. Twenty minutes later, getting out of the ambulance, she was thrilled to see me, telling everyone I was her daughter and how wonderful I am. That’s just another example, I’m sure it’s different for everyone at different stages....