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My plate is much too full...sick Dad
I've been across the country since 5/20 taking care of my dad. I am completely overwhelmed and feeling quite lost right now. He has lymphoma (non curable) and underwent chemo but his quality of life greatly suffered from it making him unable to do things on his own such as cooking, showering etc. Hence the reason I am here....I've been relatively ok w/ all of this (as much as one can be I guess) until the last week or so. I think I'm starting to fall into depression now......
I've been given no real information as far as his prognosis. He was recently hospitalized for anemia and a ton of diagnostics were perfomed. They can't find a cause of the anemia, his body is trying to replenish its RBC's, bone marrow clear of lymphoma or other cancers/abnormalities and a mass in his lung is larger so they will biopsy this on the 19th. Other than that all I hear from the doctors is to keep him eating and start him in physical therapy to regain his strength. Per his oncologist - he won't die from cancer, it will be something else. OK, then lets make it happen.
My dad just doesn't have the drive. Its like he's given up. He sleeps until I wake him up at 11am. He eats breakfast good but the rest of the day is hit or miss. I explained to him that he does need to eat in order to get stronger so he is independent again and he knows that but all I get are excuses, different ones for a different day. He tells his physical therapist he wants strong enough to be able to do things for himself and one day enjoy a game of golf. Great goals! He doesn't do any of the excercises she is asking him to daily and makes excuses when I call him out on it.
I don't know what to do anymore. He won't take initiative to do anything on his own. I can't tell if its b/c I'm here doing things for him or if he really can't do them....and he won't tell me, tried talking to him about it. Yes, there are some things we still need to figure out about his health but every doctor tells me it comes down to the eating/excercise.
I'm doing all of this completely alone. Scheduling all the appts, paying all the bills, cooking/cleaning, trying to get everything unpacked, giving the SAME update to 4 different people about the SAME thing everyday. I sit in this apartment every day watching reruns on TNT (which bore me to death!) getting my dad food and drinks and doing what I can around the house w/out aggrivating him ( I can unpack 1 box and hang 1 picture a day and thats all he can handle). I'm close to loosing my mind!
Lately I'm making everyone mad it seems. They can call and vent to me or talk about how upset they are about my dad and I'm supposed to reassure them, think positive etc. I'm all out of happy right now. I'm emotionally drained. I'm there for everyone else but when I try to explain how I'm starting to feel I don't get the same thing in return. This has taken a toll on my relationship w/ my boyfriend and we seem to argue every 3 days or so. My job is very kindly not letting me go as of yet but I know thats coming. I keep having to push out dates as to how long I'll be here. 1st it was a week, then a month and now who knows. There is literally not an end in sight right now. And I cry every.single.day.
I don't know what to do. I can't just leave my dad b/c I can't be sure he will or can do things w/out me. The family friends have medical issues of their own so there isn't any guarantee there either. Assisted living is not an option at all and he doesn't qualify for any type of nursing other than PT and shower assist. Do I really just sit here for who knows how long? I'm not sure how much longer I can do this....but I know I have to.
Re: My plate is much too full...sick Dad
This is rough. Sorry for your hard luck and rough times.
Hospitals have social workers -- they are a blessing and a boon to those who have loved ones who are very ill. They're available to speak with.
They know what it's like to have a loved one who is ill; hoping you'll take advantage of the resource that's available to you.
If you are spiritual, there are also chaplains on staff at hospitals -- even if you're not particularly religious, they're helpful to talk to.
Having a relative who is critically ill is draining, both emotionally and spiritually.
A social worker can also find other resources for your dad -- you mentioned that he isn't eligible for certain programs -- there are also live in companions that are available and visiting nurses. A social worker would know for sure what is available to you --- you might also try the American Cancer Society website.
Wishing you well and health and happiness. HTH. GL and God bless.
I second this. My dad is currently fighting colon cancer - just had his last chemo treatment a week ago today. The social workers have been outstanding. We're fortunate enough that we didn't need to use them, but they have offered emotional support, financial support and just education. While my mom can't imagine what my dad is going through, it's been hard on her as well. My sister and I visit as much as we can for not only my dad, but for my mom as well.
I want to say that you are doing something amazing. I'm lucky that my mom is there for my dad. I can't imagine how hard it would be to do it on my own. You're dad is very fortunate to have you. You are a wonderful daughter. If you need to vent on this board, please do so.
Thank you for the replies and kind words. This is absolutely the hardest thing I've ever done.
As far as the social worker -- There isn't just 1 contact person. I've talked to 3 different social workers depending on the situation. Yes, 3. There is the oncology social worker, the primary care social worker and the admitted paitient social worker. Thats the VA for ya. I get transferred around b/t them every time I call. This adds to my exhaustion.
I've had the most help w/ the oncology social worker and she has done a lot for me getting the contact info for the shower assist and PT as well as Medic Alert and whatnot. She isn't going to be able to help me out for some time b/c my dads oncologist was transferred and her replacement won't be in until September. So, until then he has no oncologist so she has to refer me to another social worker. I won't even get into how upset I am about my dad not having a "go to person"..... I'll be calling them tomorrow to get a potty assist thing my dad wants. Hopefully this will go smoothly. Its taken me over a month to get the correct information about getting him a seated walker.
I wish things were easier for my family/friends to understand. Trying to talk to them about it only ends up making me feel worse. I've poured all my energy into taking care of my dad and being emotional support for everyone else. I have none left. And I'm starting to mentally suffer from it. I know I have to get out of this apt. sometimes. Not for anything in particular but to just GET OUT. Its to the point now where I have no desire to do anything. Its kind of like I've given up too. I'm bordering on telling everyone to leave me alone and accept that I could be in this position for a VERY long time. And I know its not healthy to feel that way. Maybe I need anti-depressants to help me cope? I don't know......
Thanks for letting me vent....I've been holding in things for way too long
I've poured all my energy into taking care of my dad and being emotional support for everyone else. I have none left. And I'm starting to mentally suffer from it. I know I have to get out of this apt. sometimes. Not for anything in particular but to just GET OUT.
Precisely -- you need time to yourself, even if it's to do something as mundane as take a walk or see a movie or get a breath of fresh air.
Actually, a mental health counselor -- one that specializes in those who are bereaved or coping with those who have loved ones who are chronically ill -- would be an excellent idea. Try a local hospital for a referral -- and you are right -- the VA is positively overloaded. There are more cases than they can get answers for. They're also coping with Iraq, Afghanistan, Vietnam War vets and aiding familes who have loved ones who are actively serving overseas in one of the conflicts.
I am hoping you can find a live in companion or a hospice for your dad. You might also try contacting Gilda's Club -- another good resource for you and your dad. There should be a branch near you.
Here here. Well said.
And at times like these, here is where you find out who counts, and who does not, and what people really are.
First - *hugs* to you. This is not an easy thing to go through at all! I commend you for taking care of your dad.
First - I think both you and he need an outlet - is there a support group that he could go to? One for caregivers at any of the local hospitals that you could go to?
Second - would a home health aid be something that would work for him? They could help with his general care as well as the PT he needs to do.
Mention to his doctors his lack of interest in doing things - this sounds like normal patient depression, and they may be able to treat him with meds that could help with this.
Is he able to get out of the house at all ? Going for walks (even if it's in a wheelchair) or going out to lunch or something other than sitting around the house may do wonders for him and you both. If you can't get out of the house - does he have any hobbies?
When my dad was sick we bought him a bunch of model airplanes and he'd spend hours working on them. He loved that kind of thing when he was younger and it really helped him think about something other than cancer.
Hope some of my suggestions help!
I went through something similar w/my dad..Not the same of course.He has ALS and had to come live w/my family and I.I took a leave from work and was his caretaker til the end.Social workers @ the hospitals and asking around and the docs office for support areas was a huge help.I also joined some support groups online.I didnt have time to leave but could get on the computer to talk to someone that was in my situation.Oh I also joined shutterfly.com and started a share site that I put updates on then If anyone called I refered them there so I didnt have to relive everything umpteen times a day.I can tell you I had my moments of depression many of them.However now when I think back I am so happy I was there and got that time with him.
I don't really have any more practical advice that others haven't shared, but I just wanted to commend you for being such a loyal, loving, caring daughter. I'm sure your father appreciates it, even if he might not articulate it.
Try to find ways to take care of yourself. Someone mentioned taking a walk, going to a movie, etc. Self care is crucial in those who are helping others, so don't neglect yourself, please. After all, you can't take care of others if you aren't taking care of yourself first.
HTH.
First, I'm sorry you have so much crap on your plate. Can you update family members by e-mail rather than calling? They don't need a play by play of his every move. Do you have to update them everyday? Maybe just have oncology appointments, or treatments? They don't need to know what he ate, and how many times he had a bowel movement.
You can not care for your Dad unless you are taking care of yourself first.
Also, there are companies that can come in and alleviate you from some of the simple tasks that you are doing, but that your Dad can not do. Comfort Keepers, Visiting Angels, Granny Nannies, all are companies that can come in- unfortunately (at least in FL) most of them do not accept insurance and you would have to pay for their services.
Another thought is to speak with his Oncologist, or his PCP. He might be eligible for home health care. They can help with bathing/dressing/transferring (if he is unable to move around on his own) I think some companies will do some light cooking and cleaning. They can also help get him to & from Doctors appointments. They are there to help you, and him. .....
.... apparently I missed the last part that says he is not eligible for home care. Maybe he can be re-evaluated?
Check out the Lymphoma & Leukemia website, they might have some kind of support for family members ( i didn't look over the site very thoroughly)
The American Cancer Society also has support group information. Maybe you and your Dad could attend a meeting or something? Something that could give him some motivation, and show him that he can have a "normal" life.
Thanks for the suggestions everyone! I'll be looking into everything very soon! I'm hoping his PCP will give him the green light to get some additional care. He's anemic again - got 1 unit of blood yesterday and I'm taking him back today for the other unit.
You need to be way more aggressive with your dad's doctors.
Wait until September? Unacceptable. Demand that they assign someone to your dad right now even if it's not a specialist in that area.
He doesn't qualify for this or that? Ask someone higher up in administration and then someone else until you are SURE that you are getting the truth and not more lies, then go to the local veteran's group and ask for their form to request that their group pay for equipment or services to be donated to your dad.
People who call on the phone? Answer the phone and say "When are you coming over? What time on Saturday is good for you?" Force the issue and make those people at least take a turn in talking with your dad.
Get creative, think outside the box, and force these issues to be confronted and dealt with BY OTHER PEOPLE. Understand that these things are NOT YOUR JOB. These things are the JOBS OF OTHER PEOPLE, and you are simply expecting that THEY will DO THEIR JOB.