Coping with severe COPD in elderly parent.

Question

I am caregiver to my 84 yr old dad who has severe COPD. He is on O2 24/7 but take it off to smoke when docs told him to quit. I see how his health has dwindled in the past 4 months....he isn't hungry but will eat starchy foods, quick snacks like donuts and chocolate and chips then once in awhile he will eat a big meal. He is supposed to take albuterol nebulizer 4x daily but doesn't do it. I tell him it will help his breathing but he just says "I know". Doc suggested Hospice 3 weeks ago but we haven't done it yet and I'm wondering if it will help. Dads o2 levels have been low, sometimes saturation at 76% with a 39 to 132 heart rate! I told him that because of his severity of this disease that an o2 % of 85+ is good so he thinks he can smoke more and take 02 off more and for longer periods. He said last night he took oxygen off at 3am and didn't put it back on until 8am as his ears were sore even though he has the foam ear pieces on canula. He can hardly walk 15 feet without losing air even with 02 on! the other day he was walking 5 feet from kitchen to chair and had a mis- step and almost fell and he said it was his ankle that gave out. Nope, I saw what happened and it wasn't. His memory is failing as he asks me the same thing about every 1/2 to hour and his main focus is when his next doc appt is! He does nothing all day except watch tv, move from chair to chair and rarely bathes unless we have appts.
I work 2 days a week for 6 hours and leave him food to eat like sandwiches or leftovers from night before yet he doesn't eat when I'm gone and waits for me to feed him when I get home. That means sometimes he wont eat for 7 or 8 hours and I know that doesn't help his condition. My dad is the type of man who believes that women take care of inside of house and men do the outside. Well he can't do anything at all!! Frustrating and tiresome that I do everything and I mean everything!!!
We see our pulmonary doc on the 28th and I wonder if it is time to get Hospice in here. He is getting frustrating for me to help him as he chooses to do whatever he wants and maybe its because he feels he is dying? Idk. To see him like this is hard for me as I remember when he was healthy and doing all sorts of things. Now he is weak, coughs a lot, sneezes, has times where he moans while trying to get breath and still doesn't "breathe IN his nose and OUT his mouth" so I feel the o2 therapy is pointless with all the other crap he is doing wrong. His ankles swell a lot even though he is on Lasix & he is always constipated. He feels the need to drink warm drinks like coffee w/creamer to break up the mucus in his throat. He take muscinex twice daily too and drinks cough syrup about 5-6 times a day. And still smokes!!!
I do not think I am a good caregiver as he doesn't try to help himself no matter what I do to help and sometimes I just tell him "whatever, it's your life and if you want a good one then you'll do the right thing". He still doesn't and his disease is killing me just watching him dwindle. He went from 190 lbs 6 wks ago to 173 lbs. His lower body is muscle-less and upper body is round and he breathes from his stomach. Not sure if I can do this much longer all by myself. My sisters live in other states and have family of their own and has issues with dad from 20 + years ago so getting any help is pointless. I have children also and they live in different states and I can't go visit as I can't leave dad alone. I did go to Vegas in December for 4 days to visit a friend but I have been here taking care of him since June and the only break I get is my 2 day a week job. I don't think I am cut out to do this for years all by myself. One sister says put him in home and get back to my life....hard to do and it sounds so mean to do, but sometimes I think good idea so I can get a break...
I know there are support groups out there but I'd have to leave him now & again and that would worry me. It worries me when I'm at work also so I feel trapped and lost and angry and frustrated and want it to be over now. He has no good quality of life & this is sad to watch.
Thanks for listening and being there.

Mydadsgirl2 · Accepted Answer

My father has end stage emphysema, he has lived with me for the past 3 years. Within the past 6 months I have seen a great decline in health and memory. He has been on hospice for about 3  months mainly so a nurse would come check on him twice a week. He is confused allot, doesn't know if it's night, day or the next day. He wakes me up sometimes 3 to 4 times a night asking for cigarettes or his medication. On a nightly basis he swears up and down I am not giving him his medication. He has fell a few times. I have taken his truck keys away because I don't feel he is safe behind the wheel. I am not asking myself if it's time to a facility to take care of my father. I work 8 or more hours a day, don't get much sleep, and caregiving is getting harder. Even reading all the above comments, I still struggle with what I should do. Even though I have been in the medical field 30 years, in my mind I know what's best but in my heart I'm not ready for that as I feel he doesn't have much independence left and if I place him in a facility, that will take what he has left away.

reena81 · Answer

I totally understand what all of you are saying. I have a father I'm in care of at the moment and hardly or no help at all. I work 1/2 days a couple times a week to be with my dad. Where I live, there is a hospice but it is all booked up. I have 4 sisters and they all their own lives and kids. I'm the only one that has no kids and graduated with my AA in the local collage here. I do ask for help and I get a couple weeks here and there for breaks but his COPD is so severe I worry day in and day out. It seems like every time I turn around something is wrong with his breathing or something is hurting. He has his nebulizer regularly, meds for pain and BP meds. It is a tiresome job taking care of him but I have not a house to go to or a family. I feel all alone and my job with my father is 24/7. I'm going to have to talk to my boss about cutting my hours and than resigning the end of the year. I'm tired and I love my father very much that I would do anything to make him feel comfortable. I'm tired and COPD had struck my attention a whole lot. I had him stop smoking with the patch, it was so hard!! I would put a patch on him, and I had to leave the house when he would beg for cigarettes. I would cry in my car because I didn't want to see him and his puppy eyes every time he would want a cig. Thankfully, he quit and but he still has flare ups where we have to run to the ER. He rarely bathes unless he ends up staying in the hospital. Its hard to see someone like this. We have very little resources to help where I live. I love him so much, it would break my heart to ever leave him. I would like to start my own life, I'm 35, but, you know, sometimes family comes first, and my other part of family will never understand that. Theres always an excuse from family members and it makes me sad that someone with a breathing problem is the last on their list.

Frustrated100 · Answer

After seeing some of these posts as least I feel we aren't alone with what we are dealing with my dad. He's had COPD for some time and it has been getting progressively worse. I think the biggest clue was when the VA sent a letter to ensure that he knew that he should be on the O2 all the time now. And my dad can do pretty much a lot for himself but now that he's closer to 80 and I'm starting to think he's giving up now. He should be on the O2 all the time but I know he doesn't do it. He has pretty much moved to the first floor of the house since my mom passed away 17 years ago. But there has been some noticeable decline: he doesn't bathe, doesn't really take care of his appearance, and the latest he just sits around in his underwear. And of course ever little thing health-wise bothers him. And I'm wondering if maybe some counseling would help, of course trying to get him to do it will be an adventure of itself. Its not like he's alone, my brother and I are in the house with him but I'm not sure if that is good or not anymore.

DadsHelper13 · Answer

Thanks nurse Becky! Your comments were of a great help! I do feel like the mean one here getting on his case when he smokes but also see how he's failing fast and don't want to take away that enjoyment. He does go to the garage or outside to smoke (I smoke but after seeing him, I am going to quit when I have less stress, i.e., after he's gone so I can focus on me). I am glad that I am here with him and no one else as I have spent my whole life living close to him & Mom (she passed in 1993 at 58 yrs old of lung cancer, also a smoker) and it would seem too weird to not be with him especially now. I have a craz, mixed up family and love them all dearly but am blessed (and stressed) that I am here with him at this time.  He does try to bathe himself and we have a transfer chair in shower so that has made it so much easier. I feel weird helping him bathe cuz he's a man and my dad...too weird but sometimes I do help him.  I did tell dad part of his short tem memory loss is due to lack of oxygen and who knows how long he has had low 02 levels but I can see a lot of forgetfulness that he doesn't see. His lack of 02 levels are because he doesn't have enough lung strength to blow and to watch him do the nebulizer I almost wonder if he's going to fall over dead!!  As for the taking of the video, great idea!  I know the stories and maybe i'll get my neighbor who loves his stories to take the video and watch it down the road. It would be a surprise and a comfort as you say. Thanks again for all the great advice and words of wisdom!! Love to you and yours!

nursebecky58 · Answer

My father is in the same shape and continues to smoke as well!  He forgets due to lack of oxygen to the brain and fired one up with his 02 on and started his long beard on fire!  The drop in 02 saturation could be because he's not blowing off enough carbon dioxide. Would he benefit from a CPAP?  My father did while he was in the hospital.  My mother and I have insisted that he have to go outside on the patio to smoke, take his 02 with him via the 50' tubing, take it off when lighting up, put the 02 back on, etc.  It is a long process and if he wants to smoke that bad, he needs to do this.  My father too, doesn't do ANYTHING but lay in front of the television.

nursebecky58 · Answer

As a retired Hospice RN, I agree that he needs to be on Hospice.  They will help him bathe and become friends of the family.  You won't feel so alone. You are the blessed one...you are able to be with him for these last days. It is a very special blessing to be with your loved one when they take their last breath.  It's like helping to hand him over to God. Get him to focus on his life's accomplishments.  Maybe make a video of him.  Some day just listening to his voice will give you comfort.

pamstegma · Answer

You don't have to wait for the 28th. Just call the MD and ask for the referral. Hospice will come to you for the evaluation. They interview you and the patient to decide what is appropriate.

DadsHelper13 · Answer

Thank you for your reply pamstegman!  We have a DNR in place already & doc reiterated that he will not be resuscitated but don't think he really understands that. He does have AFib and that is what worries me..which happens first, his heart gives up or his lungs stop working. Either way I don't think he is long for this world and that is fine because seeing him like this is heartbreaking.I think Hospice is the answer for sure now and we will set that up the 28th when we see his lung doc. Thank you so much for the comment. It is helpful to know that I am not thinking wrong and it is up to the Lord to do whatever is right.

pamstegma · Answer

So sorry you have to go through this. There are several things at work here, the COPD, swelling legs suggest heart failure, and the muscle wasting suggests the body breaking down.  Lack of appetite and weight loss suggest the digestive system shutting down.  It is time for Hospice if he wants it. Bear in mind that on Hospice, there is no aggressive treatment, no surgeries, no feeding tubes, just comfort care.  If he will sign a DNR, he is ready.  That means if he stops breathing or goes into cardiac arrest, no CPR is given. You won't be calling 911, you will call Hospice and they come immediately.

Coping with severe COPD in elderly parent.

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