Frustration And Tears

by Amanda
(McAllen, Tx)

I am 23 years old and I am caring for my 78 year old grandfather who is suffering from severe stage COPD. He can still talk but he can only stand up and walk for a few minutes at a time. I live 20 miles away from him but it got hard to help, so I cut my full time job to one day a week.

My spouse and I came to stay with him. My mother lives next door and takes care of my three young nephews that go to day care and are only with her after 4PM on weekdays. Even when there is no excuse not to come over and help a little she makes something up or complains about her health problems. It hurts as well because I read about how to try to care for myself and get out once in a while or I can suffer a caregiver burn out I believe it's called. But I am with him on a couch 24/7 if I get up he calls for me to come back.

I try to eat in the kitchen and he calls me to come back and hand him something. My spouse tries to help but he really only wants me to sit there with him. I feel sooo bad because he apologizes so much to me about being so hard on me and all I can say is its okay. I'm so afraid I will hurt him if I tell him the truth about how I need just a tiny break. every Tuesday I can't wait to go to work.

I miss being out and working and I miss it all. Most of all I miss spending time with my spouse of five years. The past few days I have become so irritable with him and I feel so guilty and sorry but I can't help it. He never lets me leave his side I'm going
crazy and I want to cry so bad sometimes.

I never get to sleep next to my spouse at night or even sleep at all because he has me in the living room on the couch until 3 or 4 in the morning watching him sleep on and off. Then he wants me to get up at around 7 or 8am I make him coffee and an egg with toast well either way same routine.

I don't sleep much at all. my relationship with my partner is suffering we never ever get to even have a small chat without him calling me back to the living room. and I'm so afraid my life is going to crumble right under me and there is no one to help me or take my place because he only wants me. When I leave for errands or something I have the neighbor stay close to her phone just in case he has an exacerbation or she will go sit with him. He is still able to eat and bath and go to the toilet on his own but he is always afraid he is going to die choking as he barely sleeps.

His memory is going so I have to keep reminding him of things or mostly ALL DAY we will repeat THE SAME conversation OVER AND OVER AND OVER until he gets it.

Is there any advice anyone can give me I feel like I'm betraying him because I feel so angry towards him and I don't want to do anything.... my eating habits are greatly decreased.

I love him with all my heart but I get so frustrated. All my life my grandpa has been the kind of person that would give a stranger the shirt off his back if it helped someone else in need. So he does deserve this care but I just need some help. I wish I had someone to relate to about this.

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Live Ins
by: Cheri

I live with my in-laws and brother-in-law and of course my hubby.

My mom in law is a handful and not very nice. She is in moderate stage of dementia. Dad in law severe Alzheimer's.

I learned real quick to put up boundaries and not feel guilty about going out without them. Then when I do go out all I think about is them. It sucks. But my husband and I go to the park a lot.

Also call your local respite help. We get six free hours a week. Yes, the mother in law gets mad when we leave. But I go anyway. If I can't take care of me first.....

I miss my privacy. I miss just going out on my own on a whim. I know it is not forever but it could be years. I don't want to get burned out. Your only 23. Take some time off soon! No guilt allowed.

Don't Feel Guilty
by: Janet

Amanda - I have been where you are. Do NOT feel guilty. Get some help so that you have time for your husband. I did not do that and my husband passed away while I was taking care of my Dad. I always thought there would be time for us after my Dad passed. I have learned a valuable life lesson - Life does not always happen the way you plan it.

You will have way more guilt and regret if something happens to your husband while you are giving all your time caregiving to someone else. Even though I now have more time on my hands I still want someone else to help with my Dad so I can work through the process of losing my husband. It is without a doubt the hardest road to go down in life. If only I could have one more day with my husband.

Thinking of You
by: Anonymous

Dear Amanda,
You and Brittany in Ohio sound like you two could help each other cope since you are both caregiving a person living with COPD and if I remember correctly you are both 23!

I feel for you. I agree with the last person's comments about reaching out to the council on aging in your area or hospice. It will no doubt be hard to leave at first but you need to be able to fill yourself back up after being drained from caregiving (we all go through the drain). Even if you can only get away for one hour, do something to fill yourself up.

In our human bodies, the heart feeds itself first before it can pump to the rest of the body and in an airplane we are instructed to put the oxygen on ourselves before our children. Sometimes it takes some 'detachment with love' in order to get out and fill ourselves back up.

I will be thinking of you (I'm sure a lot of us are thinking of you and sending you love and strength!)
mary, santa rosa ca

by: Anonymous

I feel your pain. I have done what you are doing for my Grandmother when I was young and now that I am middle-aged, I'm reliving it with my husband's mother.

You have my sympathy and I will pray for strength and guidance for you.

Please keep in mind that while it's admirable to care for your Grandfather, it's crucial to care for yourself, as well as your partner. Your partner's needs, if neglected long enough, could affect your relationship.

Some older people seem to feel that they are entitled to every breath and every bit of energy their caregiver's have. We, as caregivers have to find a way to firmly stand up for ourselves and make sure to be fair to ourselves and other people in our lives, as well.

If your mother will not help, perhaps your area on aging could provide you with respite care. Additionally, hospice could help.

I hope I have helped you and not made a hard situation more difficult.

Please know that there are many people in your situation. You're not alone.

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