enabling versus caretaking

Bearsmile

Hi My dad is going through chemo for the 3rd time. My Mom died 6 years ago of cancer so I am the caregiver. I know there are some things he can't do like the laundry but putting dishes in the dishwasher I think he can do. I feel like he takes advantage of me and I don't know what to do. I went away and had a great weekend but came home to reality and am feeling lost and alone. I don't want to upset him since I don't know how much time he has left and yet I am fustrated. I am hoping I can find another caregiver to talk to since at 30 something I feel really confused. Thanks for reading this and have a great day one day at a time

Tina Blondek

Welcome
Hello Bear and welcome to the caregivers discussion board. I too was a caregiver for my dad. He passed from EC in March 2010. Life is short, do not take it for granted, do not wish it away. You do not know what you had until it is gone! Take it from me and my mom. Communication is key. You have to talk to your dad, and he to you. You have to let each other know how you are feeling. Let him know what bothers you. My parents started a journal a year after my dad was diagnosed. Wish I would have thought of this idea sooner. This journal proved to be most helpful for them. I also wrote in it. We shared our thoughts and feelings. Some people can not openly communicate, they would rather write it down. Hope this helps. Keep in touch.
Tina in Va
P.S. You are a wonderful caregiver to your dad! (( ))

HelpingDad

I understand your concerns
I too often feel I may be enabling my father to do less for himself and that this does not help his recovery. My Dad has stage 4 Head and Neck Cancer and having just completed 5 rounds of chemo, he is so weak he can barely walk. So, did I allow him to become this weak? If I were not here, would he be in better physical shape? Would he eat more and better if he were more active (ie, I was not around to 'wait on him')?

While I feel this conflict, I also know that about a week after chemo, he gets so light-headed that he is prone to blacking out. So, there's certainly phases where I can't expect him to be as active as others might be. After all, he is 79 and extremely weak. And, in talking to another cancer survivor, she expresses how the weakness compounds with each round. I also left once for a weekend following the end of a chemo cycle hoping he'd get up and around more. He tried one day (he came downstairs), then stayed mostly in bed the remaining 2 days. So, being gone didn't help matters - but why should I expect that, I first came to live with him after hearing he hadn't eaten in 4 days following the first round...

With respect to more exercise = more eating. Seems I was wrong here too. After going to a doctor's appt one day followed by coming downstairs for a family member visit, my Dad actually ate less the next two days. So much for gaining an appetite.

So, as we approach a new phase of chemo (his tumors disappeared but after stopping chemo, have started to reappear after just 2 weeks), I hope we improve our communication and to set expectations at the start (while he's in a more capable frame of mind) such as attempting a healthier diet. Whenever Dad and I have had arguments, it is mostly because I am not aware what he's going through and what his planned course of action is. So, the understanding helps me want to 'provide', follow his guidance, and fear less that he's taking advantage of me. Comfort and support is key to the emotion of the cancer patient. And, he's a grown man who knows the limitations of his body better than I, so I need to accept that 'father knows best' - and if I don't agree, try to discuss it with him rather than playing control games - that only ends up in volatile results.

I too am seeking guidance and suggestions as I'm sure every case is different. I'm planning to read more on what the cancer patient goes through to help gain insight into Dad's emotional needs that he may not be expressing.

Best of luck on your caregiving support too...

catwink22

HelpingDad said:

I understand your concerns
I too often feel I may be enabling my father to do less for himself and that this does not help his recovery. My Dad has stage 4 Head and Neck Cancer and having just completed 5 rounds of chemo, he is so weak he can barely walk. So, did I allow him to become this weak? If I were not here, would he be in better physical shape? Would he eat more and better if he were more active (ie, I was not around to 'wait on him')?

While I feel this conflict, I also know that about a week after chemo, he gets so light-headed that he is prone to blacking out. So, there's certainly phases where I can't expect him to be as active as others might be. After all, he is 79 and extremely weak. And, in talking to another cancer survivor, she expresses how the weakness compounds with each round. I also left once for a weekend following the end of a chemo cycle hoping he'd get up and around more. He tried one day (he came downstairs), then stayed mostly in bed the remaining 2 days. So, being gone didn't help matters - but why should I expect that, I first came to live with him after hearing he hadn't eaten in 4 days following the first round...

With respect to more exercise = more eating. Seems I was wrong here too. After going to a doctor's appt one day followed by coming downstairs for a family member visit, my Dad actually ate less the next two days. So much for gaining an appetite.

So, as we approach a new phase of chemo (his tumors disappeared but after stopping chemo, have started to reappear after just 2 weeks), I hope we improve our communication and to set expectations at the start (while he's in a more capable frame of mind) such as attempting a healthier diet. Whenever Dad and I have had arguments, it is mostly because I am not aware what he's going through and what his planned course of action is. So, the understanding helps me want to 'provide', follow his guidance, and fear less that he's taking advantage of me. Comfort and support is key to the emotion of the cancer patient. And, he's a grown man who knows the limitations of his body better than I, so I need to accept that 'father knows best' - and if I don't agree, try to discuss it with him rather than playing control games - that only ends up in volatile results.

I too am seeking guidance and suggestions as I'm sure every case is different. I'm planning to read more on what the cancer patient goes through to help gain insight into Dad's emotional needs that he may not be expressing.

Best of luck on your caregiving support too...

Patient Perspective
Hi Helper,
I am not a caregiver, but I am on the receiving end. Your dad is having poison pushed through his body to kill cancer, unfortunately it kills more than just that. This stuff wreaks havoc on the body and he is simply not physically capable of helping himself, therefore you are not an enabler, you are a caregiver. There is nothing you did or did not do to make him weak and helpless.

Rest is very important for his body to heal itself and yes nutrition too, but with a lot of cancer patients there is nausea, no appetite, no strength to lift a spoon, and some get sores in their mouths from the chemo. Someone suggested protein shakes or nutritional drinks such as “Boost” or “Ensure” and have had some success getting them down. These can be expensive so you could try making them, but NO raw eggs and if he has any soreness no fruits with small seeds (strawberries).

You are so important to your dad especially now, and although he is resistant to your help know that he does need you and deep down he appreciates all that you are doing. It’s hard for someone to lose their independence and have to depend on someone else especially their child, a parent feels like they’re supposed to be helping you, not the other way around.

Be patient with your dad, look for signs of discomfort because “we” don’t want to be a burden or bothersome (I know that’s not how you feel, but we do sometimes).

There is no instruction manual for all this which is why this is such a great website. Unfortunately we learn as we go, trial by fire. And a few wise words from those that have been there.

Keep fighting the fight for your dad, you are more important than you know.
Best of Luck
Cat

Bennette

Be realistic and provide instruction
Hello! I am also newer at the caregiver role, but I am an experienced mom. At 43 I have 5 kids over 18 and on their own an a teenager (17) at home and I care for my 3 year old grandson on weekdays. My mom moved in 2 weeks ago, she has stage IV Kidney cancer and has to use a walker because she has the cancer in her left femur bone. I focus every day on giving her tasks to do, that she can do herself, but never leave it up to her to figure out. For her, it is the pain medications that confuse her, but I am sure other drugs and their very condition can cause them to see things differently than you would think they should. So, if you think he can put the dishes in the dishwasher, then after a meal, say, Hey dad, stick those in the dish washer for me. Not in a mean tone, just like you would instruct a younger child to handle something. Just don't leave it up to him to figure out what he should be doing. I know this works well with my mom and if you notice he is having trouble carrying out something you told him to do, then help him out and make a mental note as to his limitations. I do this so that my mom can maintain some type of independence, even if it is just a small amount. I find that even though she struggles with some things, if she CAN do it, she feels better having been able to do it.

If just giving the instruction doesn't work, then try discussing it with him, tell him that you are getting a little overwhelmed and you would like to talk to him about what things he can do to help out a little and then put together a list that he helps you compile.

I hope this helps out. For me this comes naturally, since I have been instructing my children for years and I also manage my husband's dental office - I learned along time ago that it is easier to tell someone what you want them to do, rather than hoping they see it and take initiative on their own!

Good luck!

Petesgirl

enabling versus caregiving
You certainly are not alone. I am the caregiver for my boyfriend with Stage III pancreatic cancer. He is 3 months status post whipple procedure. While he was recovering from his surgery, he became very dependent on me for everything, and now that he is doing really well, he expects the same treatment.

Some people have said that if I didn't do so much for him, that he would do it himself, but I have tried that and that just meant that he would not eat and did not take his medicine at all. So I don't know exactly what to do.

Wish I had some easy answers for you, but I seem to be all out of them.

Just remember, you are not alone.

palmyrafan

Tina Blondek said:

Welcome
Hello Bear and welcome to the caregivers discussion board. I too was a caregiver for my dad. He passed from EC in March 2010. Life is short, do not take it for granted, do not wish it away. You do not know what you had until it is gone! Take it from me and my mom. Communication is key. You have to talk to your dad, and he to you. You have to let each other know how you are feeling. Let him know what bothers you. My parents started a journal a year after my dad was diagnosed. Wish I would have thought of this idea sooner. This journal proved to be most helpful for them. I also wrote in it. We shared our thoughts and feelings. Some people can not openly communicate, they would rather write it down. Hope this helps. Keep in touch.
Tina in Va
P.S. You are a wonderful caregiver to your dad! (( ))

I agree with Tina,
I agree with Tina, communication is vital to what is going on with your dad. I am the patient and my husband is the caregiver. Every morning he asks me "how did you sleep and how are you feeling today?" Like any cancer patient, my days vary and I never know from one day to another how I will feel on any given day.

But my DH and I have been fighting this cancer of mine (brain cancer) for 20 years. We have a rythym down and we both understand that I may try to hide how I am feeling from my husband. On those days he will look at me and say, "okay, seriously. How are you feeling?" Can't put anything by on him.

I won't lie. Some days it is easy just to let my husband take care of things because my energy is less than stellar. But I see how hard he works at his full-time day job and then he comes home and does things here at home. So I DO try to do what I can. On Sundays, we make a list of things I would like to get done during the week. THE WEEK! That gives me time to choose what I want to do and when I have the energy to do it. Laundry, cleaning, paying bills, etc. whatever it is. This helps keep it fair for both of us and allows me to feel like I am contributing without feeling like I am doing too much and it allows my husband to see the same thing.

Talk to your dad. He may feel that you would get angry at him for doing things. He may feel that he is offending you by "trying to do too much". Keep the lines of communication open.

Being a patient is hard. But sometimes being a caretaker is even harder. Please know that we never underestimate how much you do for us or that we don't care, because we do. We couldn't do it without you. You give us the reason to keep fighting when our bodies are telling us to give up. Talk to him, often. He may just surprise you.

God Bless!

Couchie

This is a very tough
This is a very tough question, which I imagine most if not all caretakers have had to deal with. On the bright side, I suppose it's preferable to a cancer patient trying to be too independent and making risky behavior choices. I've seen some get pushed to the other extreme and drink heavily while on chemotherapy or not follow any of the doctor's instructions.

I struggle with this same issue with my wife. There are certain things which I believe she could do but she chooses not to. It may be helpful to sit down and talk with them, put it in writing what you expect of them and what they can expect of you and give these expectations clear time frames. Then again, that could lead to more frustration. If someone doesn't want to do something, they will come up with reasons for why they can't. But I suppose it's worth a try! At the very least, it could lead to some humor about the situation.