Caregivers and Stress

[GeorgiaMa'am]

I saw my mom this weekend, and it was much better than the last time I saw her. She was a little more together, and her word mix-ups didn't seem to bother her so much. She has started a gigantic new flower bed project - probably 300 square feet. We had a good time looking up plants for it in her horticulture books - since I am in no way capable of helping her dig up anything.

She's quite pleased that two bluebirds have moved into one of her birdhouses. They are fairly rare in her area, and you have to have just the right accommodations to attract them to your yard.

We were able to cook together this time; she was able to help more than she could last time. We had some good conversations, and I gave her a back massage, which she loves. I guess we are in a phase where some times are just better than other times, and the times go up and down. I'm hoping so, I would much rather have it fluctuating than have the downward trend that I feared last time I visited.

I was able to take Monday off this time too, so it wasn't so hard for me to get back in the swing of things after I returned home. I'm just going to have to resign myself to going with the flow, and always taking a vacation day after each trip. Fortunately, I have a lot of them.

[Femmewench]

Originally Posted by GeorgiaMa'am

I saw my mom this weekend, and it was much better than the last time I saw her.

We were able to cook together this time; she was able to help more than she could last time.

One of the things I did when visiting my parents when they lived in their last house was not help at times. I needed to see what they were doing and how they were doing it. There were a couple of things I never knew.

My mom's routine was dependent on my dad's needs; once he went into the hospital one day ahead of her (both with pneumonia,) my brother found her in her nightgown at 8 PM having burned something in the microwave. She'd never gotten dressed that day. The tv was on a fuzz channel since she couldn't turn on the cable. We were so concentrated on my dad whose short term memory was gone, we didn't look at my mom.

Hospitals and skilled nursing facilities will work with you when both of your parents are incapable of making their own decisions. My parents both had powers of attorney, etc. These required that they be seen by their PCP and a psychiatrist. The psychiatrist wasn't a problem. PCPs won't visit their patients in a hospital or skilled nursing facility. The patient has to go to them.

I hope your mom has all the needed paperwork to make it easier for you to care for her. I hope you also have this paperwork for yourself.

I hope she continues to remain in her home as long as it is safe and comfortable for her to do so and that any transition is smooth.

Best of luck to you.

[GeorgiaMa'am]

Femmewench, thank you for your thoughtful words and insights. It's a worthwhile idea to observe my mother when I'm not helping her; it's just so hard to watch her struggle and be frustrated.

I admit I've been remiss in getting all that paperwork completed for myself. Thank goodness we do have everything in order for my mom.

It is my and my sister's goal to have her live in her own home as long as she wants to and is capable of doing so. She already spends about a third of her time at my sister's house, living in her own suite. At some point, I expect she will get tired of bouncing back and forth, but for now it suits her to live in two places.

Best wishes.

[Chad]

My mom has lived with me for a year. I feel like I lost a little of me in this. I like my independence but that seems lost too. I had shoulder surgery and everytime she heard me get up she came running. I know it is sweet but sometimes I need to be alone. I was under the weather this weekend and she did leave me alone, I was grateful for that. It's hard because I like to be alone.

[Kelt]

Dementia is hard, that’s all there is to it.

A couple of times in the last couple of weeks when I have called my mother it has to be explained to her who I am before she can get on the phone. Over the last few years I’ve been learning how to cope with these bumps in the road as each new development comes along. I know that she has forgotten my life, her life, and her 60 year marriage. But I call her often enough that she knows my name, my voice, and that I am a force for good. We are getting to the point where this is starting to erode.

I know in my mind that this is the natural progression of what she’s going through, and it is not her fault. Each of these steps though, still hurt the first couple of times they happen. I adapt and accept and get over it pretty quickly learning each time that this is the new normal.

It still sucks.

[Kätzchen]

Originally Posted by Kelt

Dementia is hard, that’s all there is to it.

A couple of times in the last couple of weeks when I have called my mother it has to be explained to her who I am before she can get on the phone. Over the last few years I’ve been learning how to cope with these bumps in the road as each new development comes along. I know that she has forgotten my life, her life, and her 60 year marriage. But I call her often enough that she knows my name, my voice, and that I am a force for good. We are getting to the point where this is starting to erode.

I know in my mind that this is the natural progression of what she’s going through, and it is not her fault. Each of these steps though, still hurt the first couple of times they happen. I adapt and accept and get over it pretty quickly learning each time that this is the new normal.

It still sucks.

That's got to be so incredibly hard on you Kelt. My sincerest condolences to you, as you walk your mother 'home'.

Your post about your mother's dementia squares with an event that happened yesterday at work, while taking calls on the corporate reception telephone line. There's this elderly gentleman, with a southern Mississippi drawl, that draws you in for the 'klll'. He calls at weird random times; I'm guessing it's when his care attendants and nursing staff don't see him pick up the phone.... but he's got dementia super bad. At first, his voice is disarming. You feel like he's got your best interest at heart. Until, he lashes out at you in the most vitriolic of ways, which are as equally disarming. He kept calling the corporate line, wanting to talk to his favorite salesman on the sales and service team. Two minutes after his first call, which I patched through to the sales and service team, I get a call from his favorite sales and service contact on campus. I was told that "Clayton" had dementia and that next time he called, to stall for time, so IT could go behind the 'scene' to establish the identity of the phone number he was calling from... so they could permanently ban him from being able to call and harass the sales and service staff. When they disclosed the story behind the horror show this person was capable of, upending the whole entire day with his cut-throat vitriol, I felt incredibly sad for the sales and service staff, as well as the elderly gentleman who had the disarming Mississippi southern drawl. Dementia is indeed, an very unsettling medical condition for the person affected by it; and also for the people who care for those affected by this life altering end-of-life-story condition.

My heart goes out to you, as you navigate your mother's care.

[Kelt]

Originally Posted by Kätzchen

That's got to be so incredibly hard on you Kelt. My sincerest condolences to you, as you walk your mother 'home'.

Your post about your mother's dementia squares with an event that happened yesterday at work, while taking calls on the corporate reception telephone line. There's this elderly gentleman, with a southern Mississippi drawl, that draws you in for the 'klll'. He calls at weird random times; I'm guessing it's when his care attendants and nursing staff don't see him pick up the phone.... but he's got dementia super bad. At first, his voice is disarming. You feel like he's got your best interest at heart. Until, he lashes out at you in the most vitriolic of ways, which are as equally disarming. He kept calling the corporate line, wanting to talk to his favorite salesman on the sales and service team. Two minutes after his first call, which I patched through to the sales and service team, I get a call from his favorite sales and service contact on campus. I was told that "Clayton" had dementia and that next time he called, to stall for time, so IT could go behind the 'scene' to establish the identity of the phone number he was calling from... so they could permanently ban him from being able to call and harass the sales and service staff. When they disclosed the story behind the horror show this person was capable of, upending the whole entire day with his cut-throat vitriol, I felt incredibly sad for the sales and service staff, as well as the elderly gentleman who had the disarming Mississippi southern drawl. Dementia is indeed, an very unsettling medical condition for the person affected by it; and also for the people who care for those affected by this life altering end-of-life-story condition.

My heart goes out to you, as you navigate your mother's care.

I don’t want to give the wrong impression. While it is very common with dementia patients to be agitated, angry, paranoid, and subject to personality changes; this is not the case with my mother. She has gone mostly what I call “ragdoll“ she is very sweet and doesn’t ask anybody for anything. I am able to joke with her that she has become the ultimate Buddha with no past and no future, now everything for her is a mildly pleasant surprise, she lives in the present. In this I know that I am very lucky, my hurts are just about watching her drift away. It is difficult to be forgotten by someone when you are right there.