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Periodic Contributor

I'm So Tired

 

My first time posting. I just joined the community because I live in Anchorage, Alaska and I can't find any support groups in my area. Almost all have to do with Alzheimer's or mentally incapacitated people. 

 

My mother is 73 and has severe COPD. She can barely walk to the bathroom in her home without getting out of breath and needing her inhaler and oxygen. 

 

It's past time that I find her a better living option, but she resents it every time I bring it up. 

 

I'm currently doing everything for her. 43, divorced with one child living in another state for college. I have no help, no one to call on when I am not up to something. No siblings, no husband, no children. I do all of her grocery shopping (and then put it all away), buy all of her cigarettes, get all of her prescriptions, and take time off of work once a week to take her to all of her doctors appointments. Mommy never leaves the house except for the doctors visits and I have such a hard time pushing the wheelchair, trying to carry the oxygen concentrator, plus my purse that I just break sometimes. 

 

None of my friends understand what I'm going through and I'm just tired. So very tired. 

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I was thinking the same thing. Hang in there.

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@jenr493918 wrote:
 

My first time posting. I just joined the community because I live in Anchorage, Alaska and I can't find any support groups in my area. Almost all have to do with Alzheimer's or mentally incapacitated people. 

 

My mother is 73 and has severe COPD. She can barely walk to the bathroom in her home without getting out of breath and needing her inhaler and oxygen. 

 

It's past time that I find her a better living option, but she resents it every time I bring it up. 

 

I'm currently doing everything for her. 43, divorced with one child living in another state for college. I have no help, no one to call on when I am not up to something. No siblings, no husband, no children. I do all of her grocery shopping (and then put it all away), buy all of her cigarettes, get all of her prescriptions, and take time off of work once a week to take her to all of her doctors appointments. Mommy never leaves the house except for the doctors visits and I have such a hard time pushing the wheelchair, trying to carry the oxygen concentrator, plus my purse that I just break sometimes. 

 

None of my friends understand what I'm going through and I'm just tired. So very tired. 


Hi JenR,

Of course you're tired! You are her full time caregiver! And let me guess, she isn't the most grateful person in the world? Or maybe she is thankful for all you do, but she insists that you KEEP on doing all of it, forever! You are exhausted, and also isolated. You don't have time or energy to do anything but keep things going for her. 

I bet you feel resentful, too; i certainly would. She caused her own illness... although i am not in favor of blaming people for their illnesses and bad habits. Still, i know that anger seeps in there... for some people, certainly for me.

 

So, let's talk about what you can do. You need a break, NOW, and you need a plan for her to get care that doesn't involve you. I'm sorry, Mama, but you have to talk about your own future. Pleasant or unpleasant. 

 

Money makes the world go around. Is she a veteran? Does she have Alaska Medicaid? She probably has Medicare. Do you have a family attorney or an accountant?  What i'm getting at is that she either has enough assets to pay for help in the home to give you a break and help out, or she is poor enough to be eligible for covered (paid for) care through the Medicaid program in Alaska, or the Veteran's Administration. Trouble is, YOU have to do the leg work. However, soon, very soon, you'll get some relief. I wish it wasn't so much work!

 

One thing you can do is look up the 'area agency on aging' that serves where you live: put in your zip code into the search box on www.eldercare.gov, and you will find the agency. Call them up, and make an appointment to see them. You can leave her alone for a couple of hours. You have to. The social worker at that agency should give you all kinds of information on what is available for free or a small fee. 

 

I'm also thinking that it might be a good idea to hire some help even short term while you figure out what you can do longer term. I hope there are agencies in your area that you can hire from, these would be home health agencies that have 'private duy' aides, home health aides, certified nursing assitants. These are folks who are trained at bathing, dressing, caring for people who need care, and these are services that are not covered by Medicare. In the DC/Maryland area, the price ranged from 15 an hour to 22, and there was a minimum number of hours, 4. So that's 60 to 88 dollars. Which is not cheap. But, if you hire someone, you get a break. I bet your mom is going to object. "I don't want a stranger in here!!"  Blah blah blah. Most people object. Too bad. Aides are used to having cranky, uncooperative older folks in their care, and most of the time, the older person begins to appreciate the care and wonder how they got along so long without her. (Most but not all are female.)

 

Having her go to an Assisted Living place or a nursing home is several steps beyond these initial ones, but i'm thinking you need to act soon before you burn out completely get sick yourself. Caregivers are notorious for getting stress related illnesses.

 

Before i blather on, does any of this make sense? I have been a caregiver, will be one again, and I used to be a geriatric care manager and hospice social worker...

 

Write back?

 

Jane

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Periodic Contributor

Hello there. Thanks for taking the time to reply to my technological word vomit. I'm sorry it was so disjointed, it had just been a long day and I hit a wall.

My mom is so grateful for all that I do, so it is hard for me to be resentful. She always says she doesn't know how people without children like me get through and she feels bad when I have to do everything for her. Which in turn makes me feel even worse. I rarely ever say no to her because she does only ask her the bare minimum, but I never let her get away with that. She's my mom and when she is happy, that makes me happy.

We've come to a tenuous agreement on the future. I have an appointment with a representative for an elder care group in my local community later this week and I'm hoping that they can give me options for the future.

She's not a veteran and falls right into the middle class bracket where she doesn't have enough to pay out of pocket for assisted living, but has too much to qualify for financial aid. The senior citizen options up here suck, badly.

I'm just burnt out right now and needed to vent. After all, she wiped my butt when I was a child, how could I do any less now? I'm just so tired all of the time. I work 6am to at least 2pm every day and then I have to go pick her up, get her to the doctor, lug the wheelchair and oxygen concentrator around for several hours. Or I have to get her meds and then clean her house or do laundry or dishes. And at least once a week make her a decent meal that doesn't come out of the microwave. It's exhausting.

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@jenr493918 wrote:

Hello there. Thanks for taking the time to reply to my technological word vomit. I'm sorry it was so disjointed, it had just been a long day and I hit a wall.

My mom is so grateful for all that I do, so it is hard for me to be resentful. She always says she doesn't know how people without children like me get through and she feels bad when I have to do everything for her. Which in turn makes me feel even worse. I rarely ever say no to her because she does only ask her the bare minimum, but I never let her get away with that. She's my mom and when she is happy, that makes me happy.

We've come to a tenuous agreement on the future. I have an appointment with a representative for an elder care group in my local community later this week and I'm hoping that they can give me options for the future.

She's not a veteran and falls right into the middle class bracket where she doesn't have enough to pay out of pocket for assisted living, but has too much to qualify for financial aid. The senior citizen options up here suck, badly.

I'm just burnt out right now and needed to vent. After all, she wiped my butt when I was a child, how could I do any less now? I'm just so tired all of the time. I work 6am to at least 2pm every day and then I have to go pick her up, get her to the doctor, lug the wheelchair and oxygen concentrator around for several hours. Or I have to get her meds and then clean her house or do laundry or dishes. And at least once a week make her a decent meal that doesn't come out of the microwave. It's exhausting.


I'm so glad you wrote back. I'm getting a picture of great affection between you, and yes she is lucky to have a child like you, as you are lucky to have had a mom who wiped your butt and loves you so well. Hm, also very glad to hear you have a meeting with an elder care group. I do hope they give you all sorts of options. Long term care options suck in so many places, especially for the folks who are too poor and too rich at the same time. 

 

I hope you can choose some way to do less, to delegate, to hire someone else to do it, because exhaustion can only be sustained for so long before your body and/or mind begin to fall apart. What do you think you could do without? Fabulous take out instead of a home cooked meal? I dunno. I just want to take a nap just reading your posts.

 

Can you tell us what you learn at the elder care group?  It sounds like the love between you sustains you at least some. What else sustains you? 

 

For me, streaming movies and series on Netflix, plus knitting and crocheting while watching, sustains me. And singing hymns. How about you?

 

Word vomit always welcome,

 

Jane

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There is a lot of love there. I think that's one of the reasons I have done this for several years now without feeling overwhelmed. My mom is one of my best friends and I tell her everything. We have a routine, she texts me when she first wakes up so I know she's okay, and then I call her when I have a break from work. Then even if I see her after work, I always call before I go to bed and say goodnight. 

 

It's only been the last year or so that things have gotten more demanding. Her health and mental status has started to deteriorate and I'll get calls to go over and change the tubing on her oxygen machine, or she won't feel well and want to go to the hospital. I worry about her constantly and it wears on me. It's so hard to admit it, but it does. 

 

I'll let you know what the the elder care counselor has to say once we meet up and I have more options. 

 

I love to bingewatch Netflix, too. I am a voracious reader and usually consume two or three books a week. Plus I have a great group of friends. There are six of us that routinely hang out and go on vacation together when we can manage it. They keep me sane. Plus, most of them have known mom since before she got bad and love her to pieces. They'd do anything to help. I am really lucky. 

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HI Jen

I am so glad that you have that group of friends!

It is exhausting caring for anyone, even when there is love and gratitude. If you and your mom are able to combine resources, I would suggest a 4 hour once a week person to  come in and help your mom. We used the local Home Instead agency here and had a very lovely lady coming. They are able to screen the people and get  someone  who can visit with and maybe even cook a meal for your mom.

Our lady also took Mother to hair appointments once a week.

We started with 4 hours once a week and went to 2 hours 3 times a week.

It was  a real lifesaver  for me. As things progresses we needed to make other arrangements. But this type of respite care can help to ease your burden.

It is important that you not get ill, or have an accident due to worry and fatigue! Respite care can help you.

I wish you the best.

Margaret 

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@margaretf725870 wrote:

HI Jen

I am so glad that you have that group of friends!

It is exhausting caring for anyone, even when there is love and gratitude. If you and your mom are able to combine resources, I would suggest a 4 hour once a week person to  come in and help your mom. We used the local Home Instead agency here and had a very lovely lady coming. They are able to screen the people and get  someone  who can visit with and maybe even cook a meal for your mom.

Our lady also took Mother to hair appointments once a week.

We started with 4 hours once a week and went to 2 hours 3 times a week.

It was  a real lifesaver  for me. As things progresses we needed to make other arrangements. But this type of respite care can help to ease your burden.

It is important that you not get ill, or have an accident due to worry and fatigue! Respite care can help you.

I wish you the best.

Margaret 


I'm thankful for your reply to her, Margaret, especially because it is so rare to hear of people hiring help, and you have done so with great results. People are reluctant to part with their money and let a stranger into the home, but it takes a village, and sometimes we have to hire help in that village.

 

all the best to you, Margaret, and your mom.

Jane

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