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I took my mom, who is in ALMC, to see my dad, who is in a SNF. He said he wants to come home. I know physically he isn’t able to come home. He has Parkinson’s and is on hospice. He is barely able to even stay up in the wheelchair very long until he’s ready to go back to bed. I asked him how could we manage getting him up, changing his diapers, giving him sponge baths, etc. and he said I’ll take care of that. I can get the nurse who used to come to come again. That is exactly why he had to go into a nursing facility because my mom wouldn’t let anyone help him. All the above, as well as we’re not financially able to pay for 24/7 nursing care. My heart is breaking and am so tempted to bring him home regardless. How do I cope with the guilt?

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I understand the feelings of guilt. A person can feel guilty even when they are doing the absolute correct thing. Keep telling yourself that you are doing the right thing for your dad. It actually makes a difference if you change your self-talk. Say it out loud if you have to. "I am doing the right thing for my dad". Repeat. It is a good idea to try to put your dad off when he says he wants to come home. Other people have suggested good ways to do this. Yes, blame the doctor. Perhaps more frequent visits would satisfy your need to do more and his need to have your company. Seeing a therapist using your medical insurance is a good idea.
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Hurtbabygirl;

First off, no guilt... You are doing your best, and considered the options, but clearly he needs more help than you can provide. So long as you know they are providing good care, know that you have done what you can and try to enjoy visits and what time you have left.

Although you do not mention any dementia with him, clearly he does not understand his own condition when he says you 'can take care of it' and hire the person who you had before. Mom DOES have dementia, and is perhaps feeding into his desire to go home when she visits.

Consider what surprise had posted - little white lies are what many of us must use in dealing with those who have memory issues. Tell both of them that he needs to work on getting healthy again so the doctor will agree to sign him out. This gives them hope and takes the blame off of you. At least in mom's case you'll have to repeat this every time, if not more often (topic can come up outside of visits.) Same for dad - repeat as needed. No commitments, just encouragement and hope for the future. You know it won't likely happen, but they don't. It does put the onus on him to 'get better' and the doc for keeping him there in the meantime.

It isn't easy to fib like this, but it does get easier over time. It isn't done to hurt anyone, so it isn't really like lying....
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I’m so sorry you’re going through this. You have a huge load on you with both parents needing care. The only other advice I can add is that you really can’t take your dad home. I don’t see that you have a choice. And I rage at the healthcare system daily because we don’t have more options. I know from very limited, recent experience that the guilt can cripple you. I’ve put my husband who has dementia in respite at a local AL for two weeks. Every day when I go to visit, he’s has his belongings packed and laid out to come home. He tears up when I leave and I go home and cry. I’m lucky because I know I’ll be able to bring him home after 13 days, but he doesn’t understand and can’t communicate and it’s just so hard. All this to say we had a bit of a bright spot today. I’d caved in and brought him home overnight. Mid-morning, I asked if he wanted to go back to the AL for lunch (their lunches are quite superior to the ones we have here), and he indicated he did! That was encouraging enough that it’s given me strength to get through the next five days. I know your situation is very different, but maybe by accepting and letting your dad know that right now you cannot bring him home, it will make it a little more bearable. That’s been part of my problem—feeling guilty because I did have a choice. Have you asked if there’s anything he’d like for you to bring from home? Photo albums? I know this is long and rambling; I’m sorry, I guess I needed to unload a little. I hope your dad will start to see where he is as a new home, and that you’ll be able to shed the burden of guilt you’ve been carrying. Please keep us posted.
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Keep reminding yourself of what's best, safest for him. Maybe your guilt is grief in disguise?
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Myownlife Aug 2018
Great answer. You are right. I started my grieving long before my husband died of cancer, so that when it happened my children did not understand why they didn't see me cry. But I did.. alone. Which maybe was wrong... maybe they needed to see me. But it's true grief and guilt often go hand in hand.
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Don't cave! We rally! That's what we caregivers, past and present, do. For when it's all said and done, you'll be able to hold your head high. And remember---this too shall pass. Hang on! Hang on to the memories. Jesus did not give in to the Romans; this, too, you will get through. I am asking the LORD to help you right now at this second. Amen.
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Just know you are not alone, and there are more people who understand than you can ever know... I cried myself to sleep so many nights trying to figure out how to bring my Mom, who was alternately begging and raging at me, home to me. She was my companion, best friend, actually my Life Partner I guess, after living together for 20 years. "Our" home was built with both of us in mind, and she wanted her own room and the deck outside and flowers, but couldn't understand why I couldn't do it alone, or at all... I wish I could have felt she was safe and cared for in a nursing home, but that's not actual reality - in the end, she died because a CNA giving her a shower and transferring her from a wheelchair to a shower chair let her slip and fall, breaking both bones below her left knee. She died 10 days later... I feel guilty about that, too, because a big worry for me in bringing her home was that she'd fall...

It's hard as Hell - you just have to stay strong, know your limitations, and do what you can - while preserving as much of yourself as possible - to ensure as good a life as you can for both of you. That's actually the best you can do for him, too, because if you fail yourself he doesn't have a chance...
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Dear Hurt - You should not feel guilt - you have done nothing but be supportive of your dad - there is the wish of us all to be 'home' but many who do go home don't recognize it because where they want to go is so very idealized in their mind - you seem to be wisely listening to the professionals in this matter

Your guilt feeling is wasting your energy that would be better spent helping them so what I wish for you is that you look at why you feel guilty about something you have no control of right now - your asking here was the right first step in realizing that the guilt you feel is not helping you or your parents -

Some people feel guilty also by habit so look at yourself closely to see if you are one of them [do you feel guilty when you see a policeman even though you have done nothing wrong?] - habits are easier to break once they are seen for what they are

Try to look beyond those feelings & realize that while your dad's wishes are important but he is only 1 person of many in the family - you can't do everything people wish for otherwise we all would just wish for good health & that would be the end of it - but we live in a world where at times not only the hard choices must be made but finding the balance so that the most individuals are maximized [for their own safety at times] is a hard thing to do
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Hurtbabygirl Aug 2018
Thank you so much! I will go back and read your reply when I battle this.
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boy can I related. When my dad was in facilities earlier this year in his last stages of Alzheimers, my biggest heart break was when he said he wanted to go home, almost sounding like a scared little kid.

I wanted to bring him to my moms home and help out, but in the last states we just probably could not have done it. But not being able to was way worse than all the time, effort, and everything else involved in taking care of him

I don't know how it works with Parkinsons. I tried to comfort myself with my dad thinking with his Alzheimers, he wasn't really aware where he was anyway, ro going home meant going somewhere else, like to a childhood home or something. I don't know if that was true or not.
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Sorry for your guilt. Its painful to take over the roll as being the decision maker. Not all decisions are easy and the answers are not always accepted with love.

I would ask you to find out about the CDPAP in your state. So you maybe to receive some monies or have you tried to see if you are eligible for medicaid. Long-term care is covered under Medicaid.
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Hurtbabygirl Aug 2018
We have been able to get Medicaid at the nursing home. That is a big blessing. The elder Care lawyer advised us we couldn't afford 24/7 care in the home.
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i think you should keep in mind that you should feel guilt only if you let him live in a questionable place where there is either limited care or none.

So if living with you would be the above then he should be in a place with continual care available and you can visit him regularly to oversee the treatment he is getting and enjoy each visit.

it seems that having him get best care possible wherever that is would be your choice.
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I am transferring my mom tomorrow from rehab facility to LTC facility. Of course for her I ll tell that it is just should be better place with better doctors. Part of this is true as I hope for a better doctor. But I am also in terrible terrible feelings, as I am failing in a care for her. She can not stay home alone mostly because of her dementia, that progressed this year tremendously and my inability to pay for 24/7. yes, I know by mind that I am not leaving her without me, I was coming every day in rehab and will be coming every day in LTC although everybody saying that I should cut visits to 3 times per week at least, but for now I cant....
but I feel your pain and I don't know how to resolve mine:(
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Hurtbabygirl Aug 2018
I feel your pain. At least we know we're not alone in this. Others are dealing with the same pain.
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Is he truly near the end? It doesn't sound like it. So you have a choice of trying to deal with this on your own 24/7 with what sounds like limited support to a point where he may fall and wind up in worse circumstances (hospital) and possibly losing space where he seems to be comfortable at...or perhaps with hospice help they can provide some at home help...but most likely not 24/7.

If you have others in your life who can take a "shift" and help, maybe...but I know how typically unlikely that is.

What a rough one. I guess the remaining alternative is to spend as much time with him as you can.

holding you in thought...
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You are only one person, if you try to be a dozen you will be down too.
Don’t give in to guilt. We all want to do more than we can. Frequently there are others who want to offer an opinion, but won’t back it up with work or money.
Make the best of the situation. Be appreciative to the care givers in the facility. Spend time with your dad when the two of you can just be together without you struggling to lift him etc.
We all second guess our decisions even when we are doing the best we can.
When he asks to go home gently change the subject. It is not a valid possibility.
Be strong and don’t give into guilt.
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Reach for the bottle of Heartbreak Medicine (self love and self acceptance of circumstances) and move forward in the name of common sense. Remember that you were brought into this world to live a life of purpose as well as your parents, and you can always let them know your crusader cape is a one size fits all. No need to feel guilty...feel worthy and confident enough to leave Dad where he is. HE UNDERSTANDS, TRUST ME!
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This last spring, I wound up assuming responsibility for my Cherished Loved One because the power was out in her then residence for 8 days. She thrived at my house, and loved being with me, and I loved having her with me.
Because of that weather, I was not responsible for the care of my precious 2 year old grandchild, who was born with a moderately severe orthopedic disability. I care for him every other week, and my heart was broken to have to tell my CLO that I wouldn’t be able to take care of them both.
SO, THE GUILT. I love both of these dear people SO MUCH, and THEY love EACH OTHER! I could ONLY say that I couldn’t deal with both at the same time after trying to figure out EVERY possibility that I COULD do it, and finding that OBJECTIVELY, I couldn’t.
You have investigated every possibility to have your dad at home OP, and have determined that bringing home would not be a good choice for his welfare or for yours. As much as you long, as I did too, to make a haven for him with you, that is not possible. Guilt is a good tool when it leads to a good result. Guilt that causes suffering for things that can’t be steals time from making things better where he is.
If your mom can’t enter the solution, and your dad can’t, and 24/7 care can’t be provided, perhaps your mom CAN come up with some ways to make his life in residential care more acceptable to them both.
I do understand where you are, and grieve with you. This life problem is one of making the best choice from a bunch of bad choices, then finding a way to live with what you’ve chosen.
Many of us are in sympathy with you.
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Hurtbabygirl Aug 2018
Sadly my mom has dementia. She doesn't even understand the shape he's in, thus the predicament of both of them having to be in separate facilities. Thanks for caring.
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I have been through hospice a few times, each time the person did not live a week.
Spend as much time as you can with your dad. Let him know how much he is loved.
i also say keep him in your prayers. Remember how your dad was.
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Thanks to each of you who have responded. Just going back and reading these posts helps me to reassure myself I am doing what’s best for him. I talked to the hospice nurse today and she thinks maybe I shouldn’t take my mom to see him for awhile to give my dad, as well as myself a break. It’s upsetting to us both to hear her constantly telling him he needs to get better so he can go home. Then he starts in on wanting to come home, which in turn gets me all upset.
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Alzh101 Aug 2018
Hurtbabygirl, oh can I empathize with you. I’ve got 2 very ill parents with Alzheimer’s and they feed off of each other with one telling the other “they have to get out of here”, no matter where they are living. I lived with them in their house 24/7 for a year and a 1/2 and the stress about killed me. So I moved and rented a room in somebody else’s house and continued to be my folk’s live-out cargiver for another year. Still too much, so I moved back to my home in another state and we hired daytime caregivers to stay with the folks. That didn’t work out well. Next my mom moved in with me separated from my dad a month and 1/2, and although she thrived, it was back to 24/7 for me and it was exhausting. My slightly “higher functioning” Dad stayed in their home with a part time caregiver. That didn’t work. During that stint, my dad wandered when alone and got lost several times thereby “ proving” there was no way to allow the folks to stay in their own home unless they had 24/7 supervision. So, the next very expensive option was exercised. They went to a memory care facility together. They were cared for , safe, together and had 24/7 supervision. All I ever heard from them was how awful that place was and how they had to get out of there and go to any other place but there. So, we found a more expensive, top of the line facility with more people, lots of activities, field trips, etc. I continued to visit every other day and the new mantra was that they had to go home, but they thought “ home” was in the state where they were born. Finally, we as a family had to come to terms with there were no good solutions, just a bunch of bad choices from which we had to select an option that kept the folks safe, cared for and supervised and allowed for the rest of the family to attempt to have some sort of existence. When you have both parents simultaneously ill, it makes a difficult situation even worse because neither can care for themselves let alone each other. No child wants to be a parent to their parent and no parent wants to be “ treated like a child”, yet that’s how it seems to the ill parent. We are probably the first generation of adult children that are faced with these challenges in mass. Society has not caught up with this dilemma and as a result we who are caught in the crosshairs, either do what we need to in order to survive, or we die alongside our loved ones. If your parents are like mine were before they got ill, they never would have wanted to have been a “ burden”. I hate thinking of my folks as a burden, but reality is, their illness has effected my life immensely as the primary caregiver, and also has effected the lives of my brothers. After quitting my job 3 1/2 years ago to care for them, so they could remain together and in their home and they’d have some money to pay for a facility when “the time came”, I’m still out of work, am a senior citizen myself, have blown through my savings and have drawn my small pension, so I can survive. Do I have guilt? I sure do. Is it helpful? It sure isn’t. Has anything turned out how my parents wanted it? Nope. Had I thought about myself while I was caring for them fulltime?, nope. I appreciate the learning that happened , however, now there’s a whole new set of challenges to deal with. Of course every person’s situation is different, but you MUST think of yourself in any choice you make. That’s my one regret.
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There is nothing wrong with telling him the truth couched in a pleasant way. "Dad, as soon as you are able to ambulate and shower on your own, you can come home. But Doc has to sign off on it. The big thing is for you to work on getting stronger and pass those tests." You don't need to argue and give the logical reasons why - his brain is broken and he cannot see that he has these physical limitations. Throw "the doctor" under the bus as someone for him to be angry with instead of you. He needs someone to blame quite likely, and you don't need to volunteer for the position!
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I wouldn't give in. I know it hurts and makes you feel guilty. but by having your dad where he is. THAT is the BEST  - like you said, you cant do all that care.
I cant cope with an aging parent either. it gets tough - and then I do my best to just keep going. take a deep breath and maybe unwind with a nap. or do some strenuous chore back at home. just nod your head in agreement to your dad, and tell him "I understand" but remind him he is under a doctors care and you feel better knowing he is ok where he is.
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What would you advise ME to do in the exact same situation? Then do that.

By your description, you know how physically challenging caring for your dad can be. That's the rational side of your brain.

The other side is completely governed by emotions-guilt included and is being a bit irrational right now. This is the area of the brain that reacts emotionally. You are making decisions on guilt because you "feel" bad and that rarely makes for a good decision.

You could try talking to a therapist if you have the mental health coverage. They can guide you out of making big decisions only on feelings. Also setting boundaries and getting over FOG (Fear, Obligation and Guilt).

I don't think giving into guilt, moving him home with you then feeling guilty that you have bitten off more than you can chew because you can't do it anymore, will be a healthy scenario.

You have provided a safe environment for him. Tell yourself you aren't responsible for his happiness. You have done your best but you can't give in to every whim just because you want to please him and rid yourself of guilt.

Remember all the candy at the checkout aisle in the grocery store when you were a kid? Do you remember how often your mom or dad let you get one of those candy bars and let you eat the whole thing? Hardly ever.

There are times we have to turn the table and do that with our folks.

I just said this over and over to myself;
"I'm doing this for your own good. I've done everything I could for you and you're in the best situation I could provide for you."

Stay strong.
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Right now its not what he wants, its what he needs. Like someone has said, he has a lot of people caring for him at the NH, it would be only you if you brought him home. Does he suffer from Dementia? Then he has no understanding of how bad he is. He is safe, clean, fed and cared for. He is where he needs to be. An AL is not equipped for this type of care.
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