My dad's in hospice care. His health is declining rapidly. He is in anger, denial and depression. How do I help him?

Hi Beth,

I don't have great words of wisdom for you, other than to say you're not alone. If you surf through the questions and topic threads on this site, you'll see a lot of threads with the same basic topic. Those of us who are caregivers can't understand how the rest of our family fails to step up and help out in a way that seems fair to us.

I can tell you with my situation I finally figured out that all of the anger I had towards my brother was only hurting me. He didn't see it and only I felt it. I finally had to come to terms with the idea that his relationship with my parents wasn't mine and that for whatever reason, he just didn't feel the same need I did to do everything I could to help them out. I also had to make peace with the idea that his relationship with my parents was between him and them and that I didn't have the responsibility for taking care of my parents' feelings about how he treated them. I didn't have that power to fix everything for everyone, even though I wanted to and tried to for several years.

Once I let the anger and feelings of total responsibility go, I felt much better. Since he was never really there to help, it didn't make things any different for him. But it made things much better for me. I can use all of that wasted energy for taking care of myself, instead of cursing my brother. Good luck...

Hi Beth,

When I cared for my dad in my home I thought my brother (30 min. away) should have helped more. I would tell him about things I did for dad like treating his infected legs and my brother would say, "How can you do that!?" My brother would come and visit for an hour or so about every 3 months. I built up resentment against him. My brother's not a bad guy but I thought he should be helping more. What never occurred to me was that I had to ask for help! I just assumed my brother should know he should be helping but when we talked months and months later he told me he didn't know what to do to help. I finally broke down and sobbed on his shoulder one day and he jumped right in and lightened my load considerably. We began working as a team and it was very effective. So my question is have you asked your brother for help? I would recommend something specific as in, "Could you go to mom and dad's 2 weeks from Saturday from 1p-4p and do __________ for them?"

If you have asked for help and no one is willing to help I would have to agree with what Blannie said. Try to dump that anger and resentment because the only person it's hurting is you.

And if your siblings have no idea what goes on, tell them!! Send a neutral email (just the facts, no judgements, no anger, etc) and tell them everything. If they are not aware of what you have to do or what lengths you have to go to to do it, tell them. Your siblings aren't mindreaders just like my brother is not a mindreader.

Give your siblings a chance to help. And they still may not but at least you would have asked.

Good luck, Beth. And I think you're doing a great job! Your parents are lucky to have you.

This is what I have learned in the past couple years: Today's elderly are living longer than ever before. The do not die suddent deaths such as cardiac arrests, strokes, etc - due to the medications and healthcare that is available. That leaves many many older people living well into their upper 80's and 90's and quite independent for quite a long time.

This group of individuals are ill equipped to be in their situation - they are neither emotionally nor in a lot of situations, financially equipped to be living so long. These are the first of many generations to come who are going to be around so long. The situation as it is now -- is tearing families apart, its emotionally draining to the caregiver, and it is very expensive and many times, the dying elderly have gone through their pension and are close to penniless. In steps the family, usually one -- who takes over their care - at the enormous personal expense to their person. Its horrible, and something has to be said and discussed about this as the baby boomers begin to age.

source: I was my mom's caregiver for 5 years. She died in January. I'm still trying to get her estate settled and buyout the lien on this house, so that I have somewhere to live. I will never be a caretaker again, and have learned to get RID OF ACCUMULATED STUFF WHEN I GET OLDER, AND DOWNSIZE!!, and also to get rid of all property if possible. Thank you, rant over.

A rapid decline in health is common during hospice care. Hospice care is provided near the end of life, and that is when health does decline rapidly. With worsening health, depression, denial, and anger would not be unusual. How can you help your father with these things? Assure him of your love, listen to him, let him vent, try to provide pleasurable experiences (maybe reading old scrapbooks, for example), and make sure the pain and anxiety are being controlled. Hospice is excellent at seeing to that, so let them know when these things occur. You may also want to talk to the hospice social worker and (depending on your personal situation) perhaps the chaplain, for ideas on how to comfort your father.

Notify the rest of the family that Dad is on Hospice Care, and that means he is in the last part of his life's journey. Anyone who wishes to see him, call him, or interact with him should plan to do it soon. No begging, no guilt-tripping, just a simple statement of fact. This is where Dad is at.

Then let it go. You are not responsible for the decisions of your siblings or their spouses or their children. You have no control over them. I understand that your heart would be aching, for your father's sake. He is dying and many are ignoring him. You present the facts and you will have to let others act on them as they see fit.

To the extent that you need extra help at this time, ask the hospice social worker to help you arrange it, paying for it out of Dad's funds, or any programs that might be available to him. Hospice will provide some respite to you as the caregiver.

My heart goes out to you. Being with a loved one on the final leg of their life's journey is a hugely painful experience -- but it is also an awesome privilege. I especially wish you success in easing your father's pain, fear, depression, and anger.

Beth, I agree with Blannie and Everish. If you have asked for help and they are not helping, try and let it go. I KNOW it's hard and it doesn't happen overnight. I am in a VERY similar situation to both you and Blannie. I have a brother many hours away who didn't see his parents for 2.5 years. I have another sibling just a few hours away that only wants their money. They don't have any. Dad now on Medicaid. I care for both my parents, Dad now in a NH and in Hospice. Mom independent down the road, but not really. Doesn't drive, needs full care. Two years ago, when I asked for help from both siblings, one said that's not going to happen and the other said unless she had access to their accounts, she would not help in any way. Unbelievable we came from the same womb!!! I was very angry and hated them for a long time, but gradually I let it go. The negative energy was doing me a lot of harm. After all, they are not sitting at home seething; but I was. They are responsible for their own souls and will have to face up to their rotten behavior some day. My brother has actually come around a little bit. He finds visiting twice a year suffices him. So he stays and eats with me for free, but if that is the best he can do, than that will have to be good enough for him, not me. I don't hate them anyway, I just have dismissed them. So listen, if you have asked for help and they do not help, it's not your problem; it's THEIR problem. Manage your own relationship with your parents and you can only do the best you can do. Some of those you write about might come around if the guilt gets to them. For the others, it never will. It's their problem, not yours. I know that doesn't help you immediately with the caregiving needs, but try and let the anger go.

xo
-SS

I come at this question from a funny place. My mother father and sister live 1500 miles away. We moved Mom and Dad to be closer to her. They were asked which child they wanted to live close to and they choose my sis. Mother is in a nursing home. I call once or twice a week and am in daily contact with my sis. When she goes on vacation (which is about every 3 months) I try my best to get there to "supervise" Dad. Not every time but most of the time. My other half has some health issues as well and...here is the kicker, his dad lives with us and I have become HIS caregiver. Now BIL does NOTHING to help us out so we never get a break either. Talk about a rock and a hard place and guilt!
What I wouldn't give for a week to not have to take care of anyone but my husband and myself! I had to beg and I mean BEG BIL to take FIL so we could have a three day weekend last year. I am PO'ed that he feels so entitled. AND feel terrible that I am being a bad daughter at the same time.

Beth53.

I read your question and reviewed the answers. All are worthly of further understanding, and each have their own experiences.

I totally understand your fustration...went through it myself. Nobody from family listented to me...and then...when they couldn't even make the promised phone calls they said they would make...I was simply fooling myself. Bottom line: these people didn't truly care, but only for their own self interests...their life. What bothered me the most was their non-acknowlegment as to the human and frankly, the economic sacrifice...basically, the giving of yourself and your time, and love for your parent. It all fell on deaf ears, and I am so sorry for them.

I agree with one of the other respondents, that you need to try and let it go and understand that you will never change the stripes on a tiger. As painful as it may be, "you" have the internal understanding that "you" are doing the right thing for your parents, and that God will is the ultimate Judge...and he is.

Anger is a natural human reaction to what you are experiencing. Like love, it is an emotion, a feeling. Understand that feeling and why. It is like tears of sadness. Tears are real and so is anger. Let it out and talk with people who can relate..but let it out. Given your situation as you have described, you are not unfounded. Yes, in your own time, you will come to an understanding about "letting go"...but that is on your own time table, and so don't beat yourself up because somebody says.."let it go."

I know you are in a very difficult situation and scratching your head in disbelief. I know all too well. But, it is ok to vent your feelings...most importantly to "connect" with people that have experienced...such that you know, you are not alone.

How can you best help? Focus on your Dad and Mother. Focus on them and do the best you can to help them..as you have been doing. Don't let these other "disconnected" people sway you from your mission to "be there". Don't let their selfishness for themselves effect what a great job you have been doing for your parents. It is not an easy road, but you will have, and I hope to know you have an inner peace.

I took care of my AZ Mother for 9 plus years. Nobody believed what I was going through...no matter how deligent I tried to explain the situation...it all fell on deaf ears. Trust me, I know, and is why I decided to write a book about the subject matter.

You hang in there..you are doing the best you can. However, no need to take a back seat to anybody, including the physicians and all other "know it alls". Most know very little...so let your gut and your love be the determining factor. Marco40

Regarding your dad, Conjustive heart failure is something people do live with for sometime. Therefore his death may not be soon and I guess he gets hospice care because of other health issues.

If your father is angry it probably means he is rebelling against the physical limitations he faces and of course he realizes he has or should have more people around him in is time of need than his wife and you.

It is difficult for the elderly to be ignored by their children and grandchildren when they need them the most. However, many people run away from elder care --they can't deal with it and just refuse to deal with it. I would see what duties they can do which don't involve direct care and have them concentrate on those duties (perhaps shopping laundry) things that would reduce the workload for your mother and you.

Often times, parents are the ones who give to their children and grandchildren but they make the mistake of never asking for anything in return. How many times do you hear seniors not wanting to "be a burden" to their children. However, they often babysat grandchildren for free for yrs, sent children and grandchildren to college, spent money on them on vacations etc. Once the relationship is set up as a one way street--parents give --children take and take--it is difficult to reverse.

I would encourage the one daughter in law to keep her children in touch with your dad. He will get alot of joy in seeing them. They will benefit from learning about the aging process, disability and eventually death. Their mother may reverse this family trend of avoiding elder care. We learn what we see, if our parents care for the elderly, we are more likely to do the same.

Good luck and I will pray that your father begins to eat.
Elizabeth

Yes, Eiizabeth's answer, that parents already trained their children not to be direct helpers, by doing always for them, and worrying not to be a burden on them in age - when we lived closer together in neighborhoods, reciprocity was understood, and a child would be expected to protest, "No Dad, you'll never be a burden to me...." but in today's broader, complex and often mechanical world, folks just get lost from each other! And I always found that it was the arguing and fear between sibs that upset my disabled brother, and maybe your parents too. I think often we also define "care" as a "burden" - when our parents actually mostly want us to cherish time with them. Maybe you can spend more time with your Dad, being silent, and doing nothing but sitting with him, and you will find that he will talk. Then you can empathize, and try to show appreciation for his insights and stories. Too much emphasis goes onto preventing falls, health risks, etc, and not enough on simple, regular routines, maybe even 1 hour or less visits, with just sitting. And if he can't get out of the house, does he have a yard? Do you know what interesed him when he DID get out before? Nature? put out bird seed so the birds visit. Ask your sibs, what they remember about his interests, maybe he showed different ones to different sibs. Small changes make a gigantic difference, and cause less stress.

The reaction of your siblings could just be their way of dealing with it. There are several psychological stages of death that everyone including the person who is dying go through before death occurs. It seems like everyone is stuck in the denial stage for the time being and are unsure how to deal with it. I am the oldest of three children and I came to the realization years ago that if anything were to happen to either of my parents, that I would be the one to have to deal with it. The best thing you could do for your father at the moment is to spend as much time with him as your schedule allows. Try to socialize with him, bring him the newspaper, watch a movie with him, read a book to him or put together a puzzle. Anything to try and take his mind off of death and dying for a while, you would be surprised what something like that could do for him. Meanwhile, do some research... I am sure there is a hospital or senior center or non profit organization near you that offers a bereavement/death and dying support group. If you would prefer a more private setting, look into counseling with a psychologist, I have been seeing one for years and they have helped me tremendously. Hang in there! It will get better!!