Venting, not sure how

Katielu

I don’t know how all of you do this day in day out care giving. I am a patient as I can be, ( I a nurse for heaven’s sake!) I do all I can to help, fix the meals, so the laundry, pill box, dry erase board… on and on and on, yet he still acts like I am going out to a party when I go to work. Or when I work at home, he acts like I am choosing fun over him… I AM WORKING!

he says things like “I remember when you wanted to spend time with me”. Last night we had a nice evening, I asked him all kids of things from when he was younger and I just listened and let him go. HE DOESN'T REMEMBER, and I am the bad guy.

I don’t have a choice but to keep doing this, but I may lose my mind in the process.

bless you wonderful people that do this with grace, I don’t think I am that good.

dancsfo

I'm sorry to hear that. I don't think it's intentional, and is a result of a PWD not fully comprehending what is going on. I think we need to learn to let go and let PWD say things as they do, and not let it bother us. I realize it's hard.

Katielu

The accusations are so hurtful. He was never like this before dementia. I am trying as hard as I know how, and I can’t stop working, he retired a long time ago, Im only 60.

dancsfo

I realize it's very hurtful. I can only encourage you by saying that's it is not about you, or your efforts, and is a symptom that just happens to manifest itself as something that hurts you. You are trying as hard as you can, and I'm sure others appreciate all of what you do.

Emily 123

Hi katielu,

It sounds like you're doing a great job, and yes, you're doing it with grace. Can you get some in house assistance--maybe an aide who can take him out so you can get some alone time, or adult daycare? Or a friend to take him to lunch?

He's not going to be able to perceive everything you're doing for him, which absolutely stinks, but since he can't, why not go ahead and get help to support your needs too? They're important. It's very hard to work and caregive.

GothicGremlin

@Katielu

I'm also sorry to hear this, and I'm sorry he's being so hurtful to you.

My situation is different (but similar) - it's my sister who has early-onset Alzheimer's and Frontotemporal Dementia.

When she was at home, I was in the same situation as you, except for the relationship. Peggy would get crabby about things she couldn't do, or if she thought my brother and I were talking behind her back. And of course, my brother and were both working. Peggy had taken early retirement (thank god).

Back then I did several things which may or may not work for you. I read Understanding the Dementia Experience by Jennifer Ghent-Fuller and Somebody I Used to Know by Wendy Mitchell. Both helped me to be able to better stand in Peggy's shoes, and begin to understand how she was feeling about everything. She was very forthcoming about what it's like for her - for the Wendy Mitchell book, she said to me "that's exactly how it feels - somebody I used to know." All of this gave me insight on how to interact with her.

Personalities differ, but for Peggy, being seen and heard went a long way.

I also brought in a couple of caregivers. At first it went over like a lead balloon. She didn't want babysitters, and I understand - but I needed time for myself, and I needed to get work done. I eventually sold it to her as it being my deficiency, my need. They were there mainly to help me out. But hey, why don't you go over and do a puzzle with them, and I'll be over in awhile. She warmed to them, and I still use one of them even though Peggy has been in memory care for the last two years.

I know some people have great luck with adult day care, but Peggy was never going to go for that, so I didn't push.

For myself, I've always tried to set aside some time just for me. I think you have to, otherwise you risk burnout.

The first thing I did was to get a therapist. She's been worth her weight in gold. I only see her once a month, but it's enough. Finding time was much harder when Peggy was home, but I still managed to set aside some time. For me, it's physical stuff like going to the gym or going out dancing. Back then, it was safe to leave Peggy at home so I'd go out to my weekly goth club. That club has saved my sanity on many occasions. I leave dementia at the door and just spend a few hours dancing my heart out. Obviously that's just me. 😄 But find something, if you can. Your life is important. Have lunch with a friend, stroll through a park, do something that makes you genuinely happy, even for a short time.

Cosmic

I AM ONLY ONE PERSON

Required to:

Do laundry

All the cooking

Get breakfast ready

Get something ready and served for dinner

Cleaning

Vacuuming

Dusting

Ironing

Get clothes out morning and evening

Assist dressing

Pay bills

Manage finances

Baking

Grocery shopping

Car maintenance

Outside house maintenance

Cut grass

Weed plantings

Water plants

Set up weekly medications

Make sure all medications are taken on time

Control TV

Set doctor appoints

Make sure prescriptions are filled

Repair things that get broken

chauffeur

entertainer

trip planner coordinator

I'm sure this is not all without pay or recognition.

I have been told more than once by complete strangers that we are earning our wings.

Katielu

Thank you all. I know you feel it too. Sometimes just feels like I am not doing it as well as I should.

he is still very aware most days, just has no memory, of events, dates, how numbers work, remote, computer. Clearly no memory of meaningful conversation, but go back 15 or more years, and he is good.

I will be fine, as I have no choice. But thank you all for sharing your experiences and ideas. It all helps.

korbkelly

I FEEL you!!!! I'm a nurse as well and my mom was just diagnosed. I LOVE my parents so so SO much but I could not move back home to care for my mom full time. Is that terrible of me? I would get so worn out. I worked in geri psych in the past and felt very overwhelmed and exhausted after most of my shifts. Take it one day at a time, reach out to us if need be. We have your back.

SDianeL

Katielu, we know exactly how you feel. I have a caregiver that comes every other week for 4 hours so I can run errands, go to doctor appointments, etc. Yesterday I went to get my hair cut and get some birthday cards for family. As I left my DH said "don't worry about me, I'll just sit here and twiddle my thumbs" you get to go have fun. People with memory loss don't reason. They can't. They have no filter about what they say. They confabulate things and make things up. My DH is 78, diagnosed 2 years ago is now Stage 5, going into Stage 6 with ALZ-Posterior Cortical Atrophy. He is now angry, agitated and depressed. When I get overwhelmed I make a list and mark things off. Makes me feel in control in an out of control situation. I no longer take one day at a time. I take one minute at a time. This forum has been a life saver for me as my DH progresses into another stage. It's terrifying and heartbreaking. Don't be too hard on yourself. When you're doing all you can, that is enough. Hugs.

Anngalyon

> @Katielu said:
> I don’t know how all of you do this day in day out care giving. I am a patient as I can be, ( I a nurse for heaven’s sake!) I do all I can to help, fix the meals, so the laundry, pill box, dry erase board… on and on and on, yet he still acts like I am going out to a party when I go to work. Or when I work at home, he acts like I am choosing fun over him… I AM WORKING!
> he says things like “I remember when you wanted to spend time with me”. Last night we had a nice evening, I asked him all kids of things from when he was younger and I just listened and let him go. HE DOESN'T REMEMBER, and I am the bad guy.
> I don’t have a choice but to keep doing this, but I may lose my mind in the process.
>
> bless you wonderful people that do this with grace, I don’t think I am that good.