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karyll Asked January 2018

Does anyone caregiving feel so tired and feel like they have no life of their own?

I only get very limited help to allow me a few hrs.

kkilleen Jan 2018
I wish I had an answer. I wish I was dead about 20 times a day.

tiredonlychild Jan 2018
Kkilleen and Erinm60 -- feel the same way. As a matter of fact, I have planned and planned and planned for my death - not in terms of immediate suicide, but because I do NOT want to go through any of this - and certainly don't want my kids to go through this when that time comes. Of course, I will be hit by a bus. This year, I decided I cannot keep living this way in purgatory - wishing I was constantly free, but constantly worried about my dad's care. It started by placing Dad in a memory care unit the first week of December (which ahem, might not have been as good as they sold it to be) But even so, it's given me a break. I swear, if I had not moved him out, they would have buried me by now. But now, I've taken a vacation with my three kids, I've started WW and counseling again. It doesn't mean things are just peachy, but I do feel like I can breathe - for the first time, in literally months, maybe years. My mother had a massive stroke at 55 - and stayed in a wheelchair until she died of breast cancer at 72. I'm 54 and in far worse shape than she was. I'm going to try to dodge death - I would like to beat the 40 percent caretaker death sentence.

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Erinm60 Jan 2018
I think those of us 24/7 feel that way. My mother has dementia. Not Alzheimer’s as far as I know. Asked her doc specifically , is it Alzheimer’s. ? Response. “ I don’t know”. So I’ve done a ton of reading. I don’t think Alzheimer’s. To make my life and my husbands and 22 year old daughter ‘s better, I had a “ needs assessment “ done. We go away. Even over night . I get help from the place where she will eventually live. I get nursing aides at the house 2 hours a day , when we go away. It helps tremendously. My mom is 80. Still has ADLS. Short term memory gone , but worked from 14 to 78 years old. She wants / chooses to sit in front of the TV all day watching Fox News. Her choice. I am giving up on guilt on that. Just because I would go crazy watching TV all day, doesn’t mean an 80 year old who is content doing so , will. She’s happy. Get as much help as you can. And for me letting go of my unrealistic expectations of what I think she should/ could be doing is the main goal I have.

Monikalabadi Jan 2018
I wish my mom would get up and watch TV. she just turn 70 years old and this is a constant struggle. 24/7, feel drain. No one wants to make decisions. This is my day from morning to night. cleaning, changing bed every day. washing clothes, cooking etc. she wakes me up at all times like 12am, 2am , 0300. I feel like to pack up my bag and go. i had a normal life before all this.. single no kids now i have a sick kid who does not want to get better.

Sunnygirl1 Jan 2018
I do feel a little overwhelmed sometimes, but, I'm working on finding some solutions. Things have a way of falling on your plate if you allow it. I have to maintain my boundaries and not take on everything. I'm taking time to carve out my own special times, friends and activities.

annestr Jan 2018
OMG, Karyll, I just discovered this site and it feels like a lifeline. I create a life of my own by going out with friends a few times a week. But knowing I will come home to my husband is always with me. Caring for him 24 hours a day, being couped up for so long is hell.

Lvnsm1836 Jan 2018
I agree, Being couped up in the house is very difficult sometimes. I enjoy going out as well. Even errands is enjoyable because I'm out somewhere.

Erinm60 Jan 2018
Kkilen, So do I sometimes. Then I realize no. No way. I have I hope 25 good years left. Maybe 20. I’m almost 57. So maybe 20. But when I look out the kitchen window, and she’s sitting there with Fox News and I feel trapped, I fight the wishing I was dead thought. This too shall pass. As Gloria Gaynor or Donna Summers said years ago, “ I will survive “.

careisgiving Jan 2018
I don't feel I have no life - I know I have no life! What we do for our loved ones is physically and emotionally draining...but we do it out of love. :-)

Luann1946 Jan 2018
Caregiving......I feel the same as you do. Those of you who say you go out when you want to have a day or a few hours with your friends....good for you, but what if you couldn't. What if your loved one needed you there every minute, that you couldn't trust them to be alone. There are some of us who can't afford to have anyone come in or have any family members that can take your place for a few hours......what would you do then???? My husband has Lewy Body Dementia, his memory is going fast. Every night I have to go through the same thing with him, when are we going home, I don't like this place, lets go home and when you tell them we are home, rage and anger sets in and he yells that I am trying to confuse him and stop telling him that we are already home when he knows different. I take him from room to room, showing him things that we have bought together and then I take him to his bedroom and there he is satisfied.........for a while. The sleepless nights, the waking every fifteen minutes for unimportant reasons, to me, but not him, yelling to see if I answer, because he thinks I have left him alone, etc, etc, etc..........how do you know if you should start the next step, by putting him in a Memory Care Home.........what, just what is right............................?????

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