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Caregiving for dad, was supposed to be a share responsibility!
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Caregiving for dad, was supposed to be a share responsibility!

Hi everyone.
I am already a member here at Medhelp, however I am new to the Caregivers community. (Thanks Tuckamore!!)
I am permanently disabled. My dad is 81 years old, has dementia, diabetes, copd, triple bypass, sleep apnea, chronic pneumonia, he aspirates his food, is  incontinent, oxygen dependent, has short term memory loss due to a coma last Thanksgiving, etc, etc. the list goes on and on. Last Thanksgiving he was in a coma, he had pneumonia and H1N1, he was placed on a respirator and was not expected to live.... but he pulled out of it! (his doctor said he has 10 lives... not 9!)
He has no short term memory, so every thing is repeated all day, every day! He was in a nursing home after the hospital and between my mother, brothers and sister we ALL agreed that we could care for him at home if we all pitched in.... that was April! I find that I am the ONLY one aside from my mother who is taking care of him... and it's 24 hours a day! Even though I am disabled due to back and neck injuries, and I am on morphine 24 hours a day I have to sleep in a recliner in the living room because he will wake up at night and wander to the kitchen! He almost always doesn't have his walker, which he will fall down without, however since the walker was given to him AFTER the coma he doesn't remember it. I can't let him "raid the refrigerator" because he is a diabetic and often his blood sugar is over 200 with insulin!!
I am upset with my siblings. My dad has been home since April yet I am the ONLY one here giving him care 24 hours a day! My mom is 79 and is starting to lose her hearing... she has trouble walking due to ankle problems, she wears braces on both ankles every day. Most recently I have found one of her pills on the floor, three times in two weeks!! She is forgetting things and she becomes angry with dad because he forgets his walker, (and for many other reasons, like the incontinence). She will yell at him and I feel so bad! I end up stepping in and telling her to take a break, now matter how tired I am!! So now it looks like I have to start caring for her also.
I guess I came here for some moral support.... I don't know what else to say to my brothers and sister that will get them to realize that I am overwhelmed with all of this! I am thankful that dad survived and I am thankful that we could take him home to pass away. He is now doing better and his doctor said he "looks better than he has in 10 years" so I know I am doing a good job but I need a break!! I just know I won't get one!
Thanks Tuckamore for letting me know that this caregiver world is here.
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7 Comments Post a Comment
Hi Precious,

I am glad that you wandered over to our forum. WOW, caregiving is a tough road. And we thought the journey through chronic pain was difficult. Add the two together and it can be a nightmare.

Bless you for giving to your parents. As you have learned not many of us can or will do that. You are a brave,kind and loving daughter. I know it is appreciated.

If you've done any reading, you know I lost my 81 year old dad after caring for him solely in my home for almost eight years. In the last 18 months of his life I watched him fail every week. My heart was breaking and my pain never leveled out. I do know what you are going through.

What I do suggest is that you contact either your local home health agency or Hospice. Your father needs a terminal diagnosis to be eligible for Hospice Care. There is no "time limit" on his life. Some ppl are on Hospice for three years, some for three days. But your dad's physician must state that he is terminal or has some "end stage" disease.

Hospice is NOT the agency it was twenty years ago. They are not the "death squad."  I and dad chose Hospice and both of us were very grateful for their support and help. They became family at the time. They also provided me with much needed Respites. You should also be eligible for other types of in home services. Please look into it.

None of my siblings chose to help with the care of our dad. My sister lives too far aways to be physically involved and his son has other obligations. So it was me. I am not sorry for one moment. The reward was knowing that I did everything I could have for dad and he was so grateful. But his mind stayed good right up till the end. Had he been confused and required more physical care I don't know if I would have made the same choices. You should feel proud for what you are giving so selflessly to your parents. But do some soul searching as this may be too much for you. It's a very tough job. No one can really understand that until they have been there. ...just like chronic pain.

What would your dad want if his mind was sharp? Would he want you to be the sole caregiver and risk your health and induce more pain to keep him at home? My dad would not have wanted that. We had discussed all possibilities before he became terminal. Dad knew that once he was bedridden or confused he would be moved to a long term care facility. It was the only choice that could have been made for his benefit as well as mine. Please think about that possibility. When you have tried all else don't be afraid or ashamed to say you just can't do this anymore.

Unfortunately you cannot make your siblings live up to their end of the bargain or make good on heir promises. Mine never promised me support. I knew I was in it alone. However have yo sent them all noted and asked for some help? Sometimes when it is in writing it is more difficult to ignore.

God Bless you for all you are doing. Please look into some respite care. I know from experience that we cannot do this completely alone. My heart goes out to you. Just know that no matter what you decide you will NEVER be sorry for the time you gave to your dad. Hug him often. never forget to tell him everyday how much you love him and what a great father he has been. Not only does he need to hear that it will comfort you when he is gone.

We are here to support you. Please feel free to post whenever you need to ...responses my be slow but they are never ignored. There are lurkers reading and wishing you well.
Don't forget to take care of very good to yourself. You are a jewel.

You'll be in my thought and prayers.

Thank you SO much tuckamore!! Your post has lifted my spirits so much! The hospice care had come for the first 60 days that my dad was home from the nursing home, they said that they could only come for 60 days then "he has to be hospitalized again before they can come back"... we did manage to convince the young man that helped him with his showering twice a week to stay on with us "under the table". So that is one chore that I get a small breathing break away during.
I did just find out that there are government programs that will pay us for caring for our parents. I will be calling them tomorrow to find out details. I don't know how my disability will be affected or if it will be affected.
I do make sure to give him the love and affection he needs and deserves. He doesn't remember being in the hospital or being in the nursing home at all... but when he was in the nursing home, every time I went to visit he would ask me with tears in his eyes "if I could take care of him at home". It was heartbreaking!! I was a veterinary technician for 12 years prior to my disability. So I have medical experience even though it was with cats, dogs, horses, etc.
I make sure that I log every single thing I do, when I do it! I have a daily notebook which I record all his meds, times, his blood sugar twice a day and his shots. It has a section for "questions for doctor" so that when he goes to his appointments we don't forget to ask anything that we may have a question about.
I just try to cope every day and night with my pain... which has been getting worse!
Thank you for your love and support! You are an angel!! I am thankful you have taken the time to post to me and help me out!!
XOXO precious
Check the service again. I don't think ti changes from state to state as it is funded by Medicare....but it could.

Home Health Care can only be approved for 60 days. Hospice is till the end of need. So PLEASE check on that. Dad had 2 Home Health Approvals, each for sixty days. Hospice Services do not end until they are no longer needed...or unless the patient has recovered completely and is no longer end stage disease. Ppl get these terms mixed up.

I am sure you are giving him much love and attention...or you would not even be his caregiver. It rips at our heart. There is no easy way to get through this...but with lots of prayers.

Chronic Pain is not conducive to care-giving. It makes everything more difficult. I use to say that I THOUGHT caring for my dad was the hardest thing I ever did...I soon discovered there was no WAS the hardest thing I ever did.  But as I have said I have no one moment of regret.

You'll make it and you won't have any regrets. Just don't be afraid to say you need a break. That is not failing...that is being human. Hospice told me that I had to take care of me before I could take successfully care of anyone else. The Respites were so helpful

I honestly think your dad should be eligible for Hospice.

Hang in are going above and beyond what most children are ever willing to do.

Your parents are very fortunate to have your love and dedication. You're in my thoughts and prayers.

Hi tuck!!
Again, thank you!
I wish I could get on the computer more often! I had two computers whose time was up within the past year! So i am left using my 18 yr. old son's.... which is no easy task! I am lucky to use it during the middle of the night when he is sleeping or on mornings like today when he has no work and was up late so he is sleeping in!
I will look into the hospice this week.
Thank you for telling me the things I need to hear right now! You are such an asset to the whole medhelp community. I wish they knew how lucky they were to have you here!
My sister finally came and gave dad a haricut, which he desperately neeeded!!
One step in the right direction! I am hoping to see more of her, although she told me the other day that she was just diagnosed as diabetic! Thats two family members now who have diabetes. Now I have to make sure I go & have that lab work thats been sitting on the table for a couple of weeks!!
I know, I know... .I shouldn't neglect my own health. Caring for my two boys is a lot. Thank god they are 18 & 16!  They just started school and we are having issues with College, Financial Aid mistakes my son made, school clothes & supplies... rides here and there, and caring for dad 24/7..., exhausting!.
My does the best she can!
Thanks Tuck!! I am honored to have met you and that we have become friends! You have a heart of gold!
Tuck.. my last post is for you!
I almost lost the whole post!! and I have NO clue how I ended up getting it back but i did!! LOL
when I hit the "back page" it was still there! But I guess it removed the "To" info!

((( HUGS )))
You are so very welcome. It's been more than a pleasure to "meet" you also. Caregiving is extremely challenging. It's takes a special person to do it well. So remember that you are very special.  

I hope you'll be able to find some assistance in home health care. Please don't put it off. Pick up that phone and make some calls.

Actually if I neglected to tell you, your father's physician can order Hospice. He simply has to agree that your dad has an end stage disease or terminal illness. That will set the wheels in motion.

Please let us know how you are doing. And thank you for your kind words.

Gentle ((HUGS))
Hi Precious,

I just now found your post, so this is a bit late. I hope that your sister will provide a little more help. You must feel truly alone in caring for your parents. Reading about your situation, with siblings who do not participate in the hard job of caregiving, I took a second look at my own Pity Party. I am an on-again off-again yet sole caregiver for my sister, a thousand miles away fighting ovarian cancer. When things get really bad, I go to TX and stay with her anywhere from 3 weeks to 3 months. Our parents are deceased, my two brothers died tragically, she is single with no children, and no in-laws for either of us. If I lose her, my entire family will consist of my two wonderful but single sons who work long hours. Sometimes I don't know if I will survive another loss.

My great fear is that I will fail mentally and emotionally (I have Bipolar Disorder II). I go through the "if only" scenarios, especially "if only I had siblings to help". The truth is that if my brothers were still alive, they would not be good candidates for caring for my beautiful sister. It's also true that you cannot change your siblings into concerned caregivers. I've seen your situation take a sharp turn when a mom or dad approaches death. They show up with a lot of drama, and the true caretaker ends up playing host/hostess to them--as if caretaking wasn't enough! I hope you will set and respect your own boundaries as an important part of taking care of yourself.

So, I have learned from your discussion with Tuck that obsessing on the "if only" scenarios is a waste of time and energy. For me, if Sis doesn't beat the odds (20% five year survival, and starting her fourth year), the end will involve either my going to TX, or Sis moving far from her home to live with me. I've obsessed about both scenarios, and it's time for me to stop!!

Even with siblings, you have become the sole caregiver. It probably hurts more than it would if you had no siblings. Please try to stay healthy, and I know that you have heard this many times--but under the circumstances, you are the only one who can do it.  My thoughts are with you.

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