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LET'S TALK ABOUT IT  / Let's Talk Archive / Carenotes

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I am an equal member of my loved ones care team.

Fearless Caregiver Manifesto
Principle Two

I will fearlessly make my voice be heard with regard to my loved ones care and be a strong ally to those professional caregivers committed to caring for my loved one and a fearless shield against those not committed to caring for my loved one.

Gary Barg

Question/Topic for July/August 2013

Share your experience. How do you take care of yourself?

Shared by: Jan Smith
Lakeland, FL

Near the beginning of my mother's steady decline, I was accompanying my parents to their doctor appointments. The doctor continued to ignore my presence as if I were not there. One day I had some serious concerns that I wanted answered. As I attempted to ask my questions, the doctor walked out. While he was out of the room, I wrote my questions on a paper towel and fearlessly held them in front of his face when he returned. At that point, I think he realized that I was in for the long haul and began including me in conversations. My mom passed away recently, and her doctor looked at me and thanked me for taking good care of her. I guess my persistence did pay off.

Shared by: Jaleyn Dobbs
Creston, Iowa

I always go to the Doctor with my Mother, she is 86 and has dementia. I really do not like it when we are as it were patted on the head and just given medication. Recently she was prescribed some VERY expensive for urinary frequency. I called and talked with the pharmacist I asked if we could get just two weeks with to try it out... She could not tolerate it!!! If I had not done that we would have been out over $200 for medication she could NOT take!!!

Shared by: Joy Fox
Victoria, BC

It becomes increasingly difficult not to react when someone says 'You must take care of yourself.' It is so easy to say and so hard to do without feeling guilty. The guilt is a killer when I (as caregiver to my husband who has Parkinson's) indulge in things that motivate me. I have kept up singing (in a choir and as lead vocalist in a band) and music grounds me and puts me in a happy place. I think it is important to look after your mind and body and doing things that you love doing keeps you going, when you want to give up. It gets you through the day. We have a beautiful garden here, that we created out of a wilderness before he was diagnosed and I still get great pleasure from keeping it looking nice. It is unfortunate that my husband cannot enjoy it any longer, so I take lots of photos and share them on an IPAD, so he can see what is happening all the time.

I love to walk and have largely given that up, but yearn to get back to it again. It is wonderful exercise. The reason I have given it up is that when I mention walking, he wants to come too and I know that I can't manage him very well when we have walked, so I have to say no because of his advanced stage. He says no to a wheelchair, which I would go for, because that way we could both walk. He could enjoy the scenery and I would get a good exercise pushing him. For the same reason I cannot take him on trips. He has fallen many times and sometimes with his walker. Therefore, until he settles with a wheelchair, I cannot walk him, and guilt stops me from walking alone.

I have one holiday a year when he will go into respite. He fought that for 6 years while I cancelled plans I had made to travel, because I could not leave him alone, even though that is what he wanted. Now I have insisted on respite, which is perhaps what I should have done sooner. He said he enjoyed it. What's not to like about 24/7 care and attention? Much of the battle of taking care of yourself is not wanting to hurt the partner who is ill. We let things go, as I have with walking, because we don't want to make them feel worse than they already do. My husband has resisted any sort of help and after many discussions that went nowhere, our son intervened, and perhaps it was just that someone else was suggesting something and not me, that he agreed to having home care workers in. It has helped me enormously. They deal with the things that I am not comfortable dealing with. He likes the attention now that he has agreed to have this care.

It was a battle with the health care system to work through it as an advocate for someone's else's care. The emphasis here is on keeping patients in their own home as long as possible, and it is assumed that you (the well partner) will become the main caregiver. This is a totally unfair situation and one that puts great stress on the well family member. I have battled with nurses and have categorically refused to do those things that I find repugnant. There is a tendency to bully you into doing everything that needs doing, some of which needs to be handled by medical personnel. I am going to keep refusing to do the things that I am uncomfortable with. That is another aspect of taking care of myself. Knowing he is getting attention from a professional health care person rather than a very inadequate, non qualified, squeamish partner is important to me.

I am very tired of fighting the system and the patient. I want someone to 'have my back' while I am advocating for the patient - who is advocating for me? We should have an ombudsperson on our team. The Caregiver groups locally are helpful and give an opportunity to get things off your chest, but the situation still remains. Things have to be dealt with and it falls to me to do what has to be done.

Keeping patients in their home as long as possible isn't always the right decision. What happens when we caregivers get sick? Then the system kicks in and a bed is found, quite quickly. I do my best to take care of myself. I have good friends, but don't want to impose on them too much. I try to do things socially when I can and I try to have one bright thing a day to look forward to. It doesn't make up for the loss of the company of your partner, but one has to get used to that. It will never be the same again, so keeping and finding those things that bring joy is important.

Thanks for asking.

Shared by: MJ
Lebanon, OR

When my sister & I were long distance caregiving for our parents, we were fortunate to find the Social Worker working within that facility, a 'Gift from God' because she could intervene when needed and understood as she was able to see what the Dr(s) had said, or not said. I have been surprised when I suggested to a friend in the same postion to check for a Soc. Worker and was told that in this state even the same system does not have them. We were keeping check on our parents in a different state so suppose that varies. IT CAN BE A SCARY JOB WHEN YOU ARE LOOKING AT FOR THE BEST FOR LOVED ONES!!

Shared by: Andrea

I am a homecare CNA. My client's Dr. is very dismissive. I send the type of information suggested with the family to the appointments and they come back defeated every time. "Oh, she's having trouble swallowing & chokes a lot? Cut her food smaller. Oh, you think she might've had a stroke? Well she can still walk & talk so no biggie. "It is so frustrating to watch her struggle & her family worry, knowing they shouldn't have to but that there isn't anything else I can do for them.

Shared by: Denise
Peralta, NM

I want to leave my parents I have 1 cat 2 chihuahuas. I'm mentally challenged. I want to move out. I get ssi. Do you know where I could live with my pets?

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