Dad is on hospice and mom is killing herself caring for him. My teenage son and I moved in when dad got sick. How and what do I do?
It’s been a lot to deal with. Dad was diagnosed with hepatic encephalopathy, fatty liver disease, non alcoholic cirrhosis of the liver 3 years ago. He also has type 2 diabetes, is insulin dependent, has dementia. He had quint bypass surgery in 2000. He was trying to get a liver transplant but has so many other health issues he wasn’t a good candidate. Mom and dad are both 74 yrs and married 54 years. My dad was and is the most kind and loving person, certainly doesn’t deserve what has happened to him. I believe when he was forced into retirement by a company he worked for 35 years he became depressed. He ate everything he wanted to and wasn’t exercising. He gained some weight and was angry that a company he gave his heart and soul to would do him so dirty.
Growing up he was the family provider. I’m the eldest of 4 girls, all 1 year a part in age. My mother is his primary caregiver. My teenage son and I moved into their home when dad was undergoing testing for liver transplant. We all knew he wasn’t a good candidate but didn’t want to discourage him. I have watched my mother killing herself trying to care for dad. I work FT closing shifts at a warehouse and care for dad mostly at night. My mom is so stubborn and set in her ways that she doesn’t take direction from the hospice nurses because she thinks she knows better. It’s been super frustrating being here because mom isn’t thinking right. She’s grown dependent on us to lift dad and put him in his wheelchair from the hospital bed, to the wheelchair to the toilet to the recliner. He has lost the ability to stand on his own 2 feet, is often confused and obsesses on things that aren’t happening. Dr gave him until Thanksgiving 2020 to live. Yet here it is almost Thanksgiving 2021. He’s still alive. Living the worst quality of life. We change his diapers now. If he knew he was the way he is he would be devastated, mortified. He doesn’t deserve this. Mom has lost herself in this battle caring for dad. She’s not caring for herself anymore and we fight like crazy because I try to be the voice of reason. I see a therapist because I need to. Dad falls often and is too heavy to pick up. Dad is riddled with anxiety and doesn’t sleep well at night. Hospice provides an aide to come twice a week to bathe dad and they provide nurses to take vitals & get all his medication and supplies. I’m burned out and so is my son because he does the physical work and I’m up all night so mom can sleep. My sisters are close but not available to help and I’m so aggravated. I ask often and no response. At 53, My life has been put on hold and I feel so stuck. I want to be the best daughter to my parents that I can be because I struggled with addiction for a part of my life and caused my parents to worry and stress. I’m 4.5 years clean and sober and I had been given this opportunity to be of service to my family. It was a blessing. I know when dad does eventually pass that I had made a living amends and will regret nothing. My faith has grown stronger as a result. Mom is bitter at times, but mostly in denial of the situation. This has been an incredibly difficult 3 years, and as dad gets worse it’s gotten harder to deal with mom. I hired a caregiver for 2 months, the best I could do. I couldn’t get any financial assistance from my sisters who are financially well to do. I pay rent and pay all the utilities, groceries and household items. The caregiver quit due to his own families health issues and I could not afford to do this anymore. Dad is a veteran so I contacted the VA to see if there was anything they could help with. They can provide 9 hours a week for a caregiver to come assist mom. Unfortunately, he is not dependable, he’s unreliable and irresponsible. The company can’t find any caregivers who want to work. It’s a really tough time for small businesses. I talk with hospice nurses and make them aware of everything that goes on that mom omits talking about. Mom thinks she doesn’t need the help, but we do. How and what can I do?
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You sound like such a fine human being. I am admiring if your concept of " living amends", even if I don't agree with it.
I want you to ask yourself a question, about your son.
If he did something to cause you worry and anxiety, would you want him to physically and psychologically injure himself to "make amends"? Would you want your grandchild to give up part of his/her teenage years to lift you?
Your mom has, for whatever reason, chosen an unwise way to deal with your dad's illness. Can you see that you might be enabling that unwise path?
Have you considered that dad might be getting more, and more consistent care in a good nursing facility? Have you spoken to hospice about that?
You and mom are both burned out. What will happen if you have a heart attack, or injure yourself, or become seriously ill?
I think it's time to look at some other solutions.
Start by contacting the Hospice Social Worker.
1. Get dad into respite care for a week so that you and mom can have a break. This might give her space to think more clearly.
2. Get Dad meds for his anxiety.
3. Call 911 when he falls. Every time.
4. Get dad qualified for Medicaid. Ask the social worker for help. Know that there is a difference between Medicaid for at home care and Nursing Home Medicaid.
5. Take mom to an eldercare attorney so that Mom's interests are protected. As the "Community Spouse", she will not be impoverished.
6. Ask the SW to get a Hoyer lift ordered for transfering dad.
7. Ask the Hospice social worker and chaplain to pay a visit. Tell Mom in front of them that you and your son will be leaving on X date because Dad needs more care and you can see that she won't get it if you are there.
Please let us know how you are getting on. Others will have more, and better suggestions.
We already have a hoyer lift. It’s a monster to use in such a small bedroom, and in the bathroom it doesn’t fit through the doorway even without the doors.
I reached out to our hospice social worker and case manager to find out about some other assistance that my dad would qualify for. My dad and mom both receive Social Security and do not qualify for Medicaid or Medi-Cal because they make too much money if you can believe that. I went on the website to apply for my dad and just reading over the basic requirements in order to qualify, he is over 65, and disabled.
Income requirements make him ineligible.
Dad is a veteran, so I reached out to them here locally but was referred to the Loma Linda VA. Because I’m not his wife, nor am I power of attorney like my mom is I wasn’t able to discuss my dads case.
I did give my mom the contact information this morning and she spoke to the gal from the VA. They’re supposed to send out emails requesting a male caregiver to help assist a few hours a week.
I spoke to the hospice nurse as I always do about dads medication and told her that my mom wants to be the only one to dispense his medication.
That doesn’t work out well because she is sound asleep and I am the one who is up listening to dad shake the bed rails incessantly, I go check on him and he isn’t tired or he is anxious. I did tell the nurse that I’m not following my moms direction about her being the only one to medicate him. I’ve taken it upon myself to keep some of his anxiety medication and sleep medication in my room for when dad is up at 11pm, or 1am then I will give him the medication that the nurse told me to give him.
The nurse said my mom is in denial and not dealing with this situation well. I already knew that. Unfortunately she’s not willing to seek any help for her own issues.
I can only be responsible for myself and my son.
I have made an attentive date to move away from my parents home. I’ve given all I can possibly give. I need to and want to live my own life without all this extra responsibility and stuff.
I do not know my parents financial information. This is one of those things that have always been private between my parents. Now that dad can’t remember anything I cant get any information from him, and mom is so secretive. So much so it’s dysfunctional.
All I ever hear is how broke she is and how she can’t afford this or that.
I would like to think if they had any retirement then she wouldn’t be crying poverty all the time.
I’ve discussed this situation with my dads sisters and am told that my parents never thought ahead or prepared for their future.
Also, from what I understand whatever money dad got from his retirement was spent already and there’s nothing left.
Is that my problem, no. Absolutely not.
I really needed to see all this feedback to get a better perspective on my own life and make some changes.
As uncomfortable as it is to recognize and admit, it’s been extremely helpful.
Your son is still in school, and is often late. His life is suffering.
You feel you owe it to your parents because of your issues with addiction. Your 3 sisters refuse to help in any way. Why is that? Don't they care at all what happens to their parents? Or do they somehow think that YOU owe your parents caregiving? If so, WHY? Did your parents give you large amounts of money when you weren't sober?
Your father was in a VA home. He didn't like it, so your mother let him come home. I think the obvious solution here is that he needs to go back there ASAP, don't you? If you don't think that is necessary, then why not?
To answer some of your questions, I cant speak to why my sisters refuse to help except they are living their own lives. They know I’m here so they’re not concerned with assisting. I would have to say they’re very selfish. I’ve practically begged for them to come at least one day a week to sit with dad so mom could get a break. I get to go to work so that’s my escape from being home. I get a barrage of excuses as to why they can’t come, or one sister made a commitment to come but never showed up. I’ve given up on getting any assistance from them. My parents never gave me any money or anything else when I was active in my addiction. I guess I’m just codependent and feel guilty because it’s such a sad situation. I have however made a plan to move in May of next year as this will give me a chance to save up enough money. As you’re aware everything is very expensive right now, especially in California. Mom doesn’t want dad to go to a facility so I’m beating a dead horse so to speak every time I mention it.
I appreciate the prayers.
We already have the Hoyer lift but the bedroom is so small, it’s difficult to maneuver it around.
Same thing in the bathroom.
Have taken all the doors off just to fit the wheelchair, The lift is way bigger and definitely takes 2 people to work it and move dad.
Seems like it’s hardly worth it to try and use it.
Just wish there was a simpler way to move dad. Especially when changing his dirty diapers.
Im hopeful that my mom will get some more help.
I just have to stop being so helpful because it’s only enabled the situation and made me feel crazy.
Again, thanks for the prayers, kindness and understanding. 🙏🏼♥️
It is hard enough to watch our parents go through illness - aging and then learn how one medical hardship can really just bring such pressure on a family. There are no words and though you did very well explaining it - many of us know there is even so much more to what you have all been through and endured. Many of us have been in that absolute chaos - I think you are often thinking “how am I even still standing”. I can relate.
You are all in need of assistance and help. I know how it is unsurvivable without help and yet I also know how hard it is to see the light to anything normal and find the time to get the assistance that will be a fit for your circumstances.
Each of our needs have similarities but are also so very different…it is difficult with just the daily needs to have the energy to even start to build the team that is needed. Life threw every piece of the monopoly board up in the air - and while trying to put the pieces back together - we are also suppose to be able to continue and give to our every day lives - which does not happen - and there isn’t enough time in a day to learn and care for our loved ones new needs and keep up with all our other responsibilities and therefore everything in our life is behind. You often feel like how do I ever catch up.
Im not sure where you live - if you have ever reached out to the Council on aging or requested a social worker to see if there are additional resources in your area that he may qualify for?
My mom had a toxic reaction to a medication that brought on toxic encephalopathy and I did learn a lot on hepatic encephalopathy at that time - it is hard to watch someone go through. The personality changes - confusions and how it affected my mom I still have ptsd over watching her go through that. I’m not sure if he has endured that part or to what level but I do know it was hard for me.
With hospice they should provide you with a hoyer that makes it easier to lift him to his chair - toilet etc. My mom is a stroke survivor and I use the hoyer for her - they can train you on it and provide it at no cost. I know others here have worked with hospice that can give you more insight on what he can qualify for - I do remember some saying they received more services and or time and aide help (I’m not sure if that was per diagnosis or if it was per what each hospice agency offered). You can ask hospice to send out a social worker and even discuss with them what you are going through and if there is any other local resources - maybe you met with one in the beginning and now either they have additional resources or maybe he qualifies more now?
I understand a lot of this depends on your moms willingness to allow more help or change circumstances (even going to a hospice house) so I can only think that for today step one is to request a social worker and speak with them about all of your concerns and needs and see if they can offer any other assistance and maybe your mom will also listen to a SW and allow her to accept any changes needing to be made.
You and your family are in my thoughts and Prayers - ((hugs)).
Its so relatable. It’s exactly how I feel.
There’s comfort in knowing I’m not alone in this struggle.
You can be of service to your family and to God without harming yourself in the process. You know you're at the end of your rope when you're working full time, not sleeping at night, lifting dad up when he falls, dealing with mom and all of her issues, spending your own money to finance your parents lives, caring for your son, and internalizing your father's pain and anguish in the process. You're threatening your sobriety, is what you're really doing here, which is a very serious matter! We're all but one sip or puff or swallow away from relapse at any given time and stress is THE worst thing for us! You're trying to be Superwoman for everyone except yourself and something's gotta give!
Take BarbBrooklyn's advice and start looking for alternate care arrangements for the folks, asap. Your life matters too, and so does your son's life. Please realize that and take the appropriate action before your burn out is so great that you relapse or worse.
Best of luck
It's complicated, but dad can transfer part of his income to mom to become eligible. A visit to an eldercare attorney, one who is certified and understands Medicaid/MediCal, would be a good investment.