Struggling!

Karenrn66

Good Morning,

This is my first time on this site, as many of you it has been a difficult year. Last July my mom was diagnosed with lung cancer. At that time, I moved my mom and dad (who has Alzheimer''s/dementia) up to SC to live with me an my husband to help care for them both.
Unfortunately, we lost my mom to her cancer in late November. At that time, I became the primary caregiver for my dad.
As a nurse, I was ready for the care I needed to give to my mom as she suffered from her lung cancer but dealing with my dad with Alzheimer''s has been more difficult than I could have imagined.
I quit my nursing job only one week before my mom passed away and in Feb I started working from home, so I could have the flexibility to care for my dad. He goes to a Day Center during the week which has been great for him and for me.
My struggles are coming from dealing with a man who is my dad and is now acting like a child. The voices he uses to get attention, his occasional retaliation outbursts, and and overall behavior has been very difficult for me to manage - emotionally.
Then it snowballs - the struggling and then the guilt. I feel guilty for struggling, for wanting to avoid, for not being able to manage my feelings. I think you get the picture.
I know it could be a lot worse - but I am struggling! Sometimes I just cry because I feel like I am not doing a good job or that I am failing as a daughter.

Thank you for listening!

DrinaJGB

He is not doing this to get attention, He is doing this because his brain is sick. The best thing you can do is change your perspective regarding this and try to take a step back when he is being difficult. Sometimes it helps to just take a very deep breath and slowly blow it out before you deal with the situation at hand. It will allow you to be able to respond instead of react.

 It will also allow your raging cortisol levels to drop. You become at risk for many disease with circulating elevated cortisol because you are always having to be hyper-vigilant.A study was done on caregiver's cortisol levels and it was found that the levels were 50% higher than the general population.This can be disastrous.

This is very hard. You will in all liklihood never encounter anything more stressful.You are going to be frustrated and exhausted. At times when he is getting wound up it helps to just walk away for a minute and then come back with a tissue in hand or a cup of water for him. Often the patient will forget that they were upset.

I am a retired RN, but that does not prepare you for this difficult and oftentimes confusing situation---most especially because he is your father, and it's difficult not to take it personally.

Hang in there. You must be the adult now and you are the strong one. Be brave.

Lindsay22

Hi Karen, 

First of all I am so sorry about the loss of your mom.  That certainly can't be making caring for your dad easier.  I also struggle with a lot of guilt and feeling like I am a bad daughter, bad mom, bad wife, bad employee...basically bad at everything as the level of responsibility is just too much for me.  I lost my **** on my teenage daughter on Sunday over something small after spending the morning cleaning up bathroom accidents for my mom.  I left work 3 times last week when caregivers weren't able to deal with my mom.  I went to dinner with my husband Saturday night for our anniversary (which was over a month ago) and I was so exhausted I was home and asleep by 9:30. So yeah, I get it, I feel like I'm failing at everything. 

My mother is also a totally different person than she was.  I don't know if a psychologist would recommend this strategy but something I have done that has helped me is to separate my caregiving duties from grieving my mother.  When I am with her (especially when I'm doing things like cleaning up poop) I don't think about her as my mother. It's a job I have to do. A task that has to be taken care of.  A person who needs help but not the mother she was. When I am not with her I grieve her. I think about who she was and how much I miss her.  But if I think about that when I am with her I can't do what I need to do.  In a way it's like when the kids were little and you were just on autopilot.  Diaper, feeding, rocking, cleaning repeat. Hopefully I will forget much of this just like I did the infant days. 

It's so hard, and depressing as heck.  I know it has helped me to talk to people here and know I am not alone. Even if you don't feel it you ARE doing a good job, you are doing what needs to be done and through that you honor your parents. 

PickledCondiment

Karen- thanks for reaching out to this board and to people who understand your struggle.  As unpleasant and harsh as this is sounds, you must must separate yourself from your caregiving tasks.  As others have mentioned, the stress will take a toll on you, sooner than later, the consequences are dire. I've learned (continue to learn daily) that my mother isn't the same person she was before her cognitive decline.  If I don't let those new behaviors go, I lose what little mental acuity I still possess and my blood pressure skyrockets! I remind myself I must maintain my own health (physical and mental)  if I intend to continue to function as a caregiver, I refuse to give into the guilt mentality.

Post often, we can and will support one another.