My dad's in hospice care. His health is declining rapidly. He is in anger, denial and depression. How do I help him?
My father is 85 years and can't leave his house because of his condition (primarily congestive heart failure). He isn't yet confined to bed but is unable to do much other than take a shower or sit at the table for a meal. His appetite is in decline, he is losing weight, and his blood pressure is low. He's been in in-home hospice care for 5-6 weeks. My mother lives at home too; she's 84 and in good health, but has severe arthritis and she can't take care of their home by herself. I live two hours north of them in Denver. One of my brothers lives five minutes away from our parents; his 31 year old daughter lives with him. My niece has been over to her grandparents' house once since my dad was enrolled in hospice care, and that was because my mother made dinner for her and her father. Other than that my parents haven't seen or spoken to her, not even by phone. My mom reports that my brother occasionally stops by to "check on us", but ends up talking about his crappy job and his problems. He does mow the lawn for my parents, but I think he's convinced himself that fulfills his obligations to them.
My oldest brother lives out of state and has some pretty serious health problems of his own, so there's not much he can do to help.
My sister and her husband live near me in the Denver area and have not visited my parents since Easter. When I asked my sister if we could expect them for Mother's Day she said she didn't know, it hurts her to sit in a car that long and besides that her husband "feels like shit".
My sister's daughter-in-law, who is one of the best people I've ever known, took time out of her busy schedule to take her kids on the two hour drive to spend some time with grandpa and grandma. She also sent my parents a family history activity that my parents have enjoyed greatly.
I don't mind doing as much as I can for my parents. I don't mind being the primary caretaker. What has me almost enraged is how my sibs and nephews/nieces are avoiding our parents/grandparents. I don't know what to do with all the anger I feel toward them. I want this resolved without my parents knowing about it and before we are faced with a funeral. Any words of advice would be appreciated.
My siblings have no clue what goes on behind the scenes.
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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...
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 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.
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.
xo
-SS
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.
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
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
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