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 STRONGLY feel you are waaaaaaaay off base when you say, 'Pull yourself up by your boots straps & focus on 'his needs'! I can only surmise that you are unaware of the pathology of depression—thus 'pulling one's self up…' is often IMPOSSIBLE w/o medical intervention & this woman CLEARLY needs to focus on herself as well!
Have a nice day,
Enriched
Way too many people present a quick answer as a solution, as with Ferris1. I understand the answer, but is probably what you have heard from many. Good for her it is so simple. It is not.
Right now, with you Dad in Hospice, you need to be there for him, and to focus on his needs, to calm the situation/environment. Yes, his needs. For,he likely doesn't know what he is doing, and/or coming off to you or others.
He is angry because he is dying, and depressed. Of course he is likely in denial. And he is angry because just maybe that is his internal personality type. Try and do the best you can to understand this...because understanding this...and that it is not going to be easy, will give you much more than to only be responsible for yourself...as on respondent indicated the path to be. If that is the case, you might as well just walk away, right now...and you'll really save yourself.
Pull up you boot straps and hunker in...and see it through. Be as strong as you can, and seek others for support during these times. You will not regret it. Marco40
as far as hospice, i know they have had some people for well up to 3 yrs.or even longer. so whatever time you have to be with your dad, just try to enjoy it. you'll be glad you did, and won't go through all of those 2nd guessing questions later on when it does become his time. and yes, you are doing a great job with him beth. ask hospice about a respite for yourself. I did, and my husband was at the local hospital for 5 days. I went on a retreat for 1 day and a night and rested the rest of it. i didn't realize how much i needed it then. my husband was with hospice almost 4 months, and just went to be with the Lord on the 7th of May this yr. I know how hard it is for you, but you are carrying out a great love for your dad. it is a witness to others more than you know. hospice usually has a list of volunteers also. take advantage of even an hour or two when they are available to come. even if it is to just jump in your car and go to the end of the road or drive and just be able to enjoy the outside. or take a walk while someone is there with him. i know my husband liked it when someone came. we had a volunteer that was a man and he liked that too. so, do what you need to do to keep yourself from getting too exhausted. and drink plenty of water. hope this helps some, will pray for you and your family. Father, I just ask you to touch this family. Open the eyes that need to see You, and open their ears so they will truly hear You also. Help them know that this life is not about themselves, but is all about You and Your love for each of us. I ask that you continue to strengthen Beth and give her Your peace in Jesus Mighty Name. Amen.
But generally those children who can't visit or do direct care chose not to do anything else either.
Basically they are not caring people, if they lack love for their parents, I don't believe they really love their spouses or parents. They have never really grown up.
Yes our elderly parents are living longer with medical technology etc but most remain pretty self sufficient for many of their retired years. Generally the decline in health demands more caregiving (bathing feeding etc) for the last 3 yrs or less. They spent 18 yrs raising their children, but these adult children can't give
one sixth of that time back? Really shameful, but if you reap what you sew, their children will push them into a NH (prematurely) and run away from them.
Do try to let the frustration of dealing with them go. They aren't worthly of your time, spend the time with your parents. Spend on home health aides to get your rest. Treasure the time with your parents, it will be its own reward.
Elizabeth
Take care of your parents as best as you can, until the time comes, if ever, when they need to go to an AL or NH. When that time comes, you'll know it.
If it becomes necessary, my nephew died in a very nice hospice in Denver. They controlled his pain and let family members sleep there.
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.
You are learning that you are NOT alone in your experience[s] thanks to this OUTSTANDING RESOURCE!!!! I strongly urge you to check out 2 threads on this site…
1. Caregiver Burnout
2. The Caregiver & Dysfunctional Families
Re: your father's state of mind—hospice should make available 'counseling' for your dad. I launched a hospice group [marketeer] and feel certain that such should be available, they should also have a chaplain—additionally, if he has any church affiliation, consider bringing in the pastor/priest/rabbi.
ABOVE ALL, take care of YOURSELF & secure counseling for this 'journey'! When the lifeguard doesn't stay afloat—NOBODY SWIMS!!!!
Please remain connected to the amaaaaaaaaazing peeps, advice & resources you will find thru this site. It feels to many of us that we are all alone in this unifying situation—yet now, I feel more 'connected' that possibly any other time in my life thanks to this venue! WE are NOT alone!
Much Peace to You!
Enriched
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
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.
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.
There is alot to be said for comedy DVD (Carol Burnett, Jackie Gleeson, Lucy) were his favorites and lifted his mood.
I agree just being there is very important. Except if you are the primary caregiver, you are so so busy with the physical care, diet/meals, laundry etc. That you need to remind yourself to take a breathe and just talk to the parent and I always began and ended my day with a big hug for him. I referred to it as "big hug" time, it always brought a smile to his face and a roll of his big beautiful blue eyes.
I agree that people can move out and drift away but as I was raised, "Blood is thicker than water" or when you leave your parents home you have left the two best "friends" in your life.
Hang in there and try to keep the focus on your dad. He will appreciate it.
Elizabeth
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
xo
-SS
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.
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...