Dear Friends,

It's been 4.5 years since my dad passed. I thought I was moving forward but lately I am struggling again. I've been the family caregiver for as long as I can remember. I took care of my mom after her cancer diagnosis and then I helped my grandmother with errands and appointments. I also helped my sister when she had her son and then my father had his stroke at 81 years old.

I tried so hard to do it all. Before my dad had his stroke, I had paid the bills, cleaned the house, mowed the lawn, shoveled the snow and did the grocery shopping. After he came home from rehab, I managed his meals, his meds, his appointments, blood sugar, blood pressure.

In rehab he almost starved to death from the side effects of the medications. I told the social worker, I would make all the changes to the house so he could come home and I would take on his care. I thought I was keeping up but his grumpiness took a toll on me. He started refusing his meds. This is where I made a fatal mistake. I remember telling the doctor in November 2015 about this and he said this is can only happen in the short term.

I even got a call from the doctor in January 2016 because the pharmacist had noticed I had not come back for his meds in three months. I tried to get my dad back on track but he would put up his arm when I gave him the meds. My siblings didn't support me either and I was struggling with anger and resentment.

I feel so stupid now that I gave up instead of calling the doctor or going to the social worker or even calling 911. He needed those meds to stay alive. His heart started to fail him. He was in pain and even told my sister he was not a person anymore. Here I was trying to keep everything going and failing to do the most critical thing which was ensure he was taking his pills.

We met the doctor in October 2016. She said he had heart failure and believed he had 6 more months. Two days later he died. I visited him before work that day. Trying to help feed him his lunch. He was so weak and not even the nurse suspected he was dying. I feel terrible about how impatient I was that day and I just left to go to work.

My whole life, I thought it was my duty to care for my parents. No matter how grumpy my father was every day, I still had a duty and moral responsibility in which I failed him.

Not one person has ever blamed me, but I blame myself. To this day, it is something I struggle to come to terms with.

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Just saw your post about your Dad.

Every patient is different, but my loved one lived longer without the medications. He had several downturns when given a new medication, and several rallies after taking the offending meds away.

With you being impatient and leaving for work, that did not kill him. Of course you would want to have been in a better attitude towards him. None of us can do that for very long.

Understand and read what you shared. I hope the thoughts, and the personal pain you are feeling gets less, as we enter springtime....a time of renewal.
Helpful Answer (1)

Dear Friends,

Thank you for all your compassion and kindness. (((hugs))) to you all for taking the time to write and offer your wisdom, comforting words and prayers. Deeply appreciate it.
Helpful Answer (3)

Don't tear yourself up. If your dad had been in a nursing home they wouldn't have forced him to take his meds, so you shouldn't have either.

My mom was in the hospital in December and has taken maybe a week's worth of her meds since she got out on January 2. She's on hospice, and the nurses won't force her to take them, and I agree. It's time to wind down, and she's made that choice as much as she can with dementia. I know and the nurses know that those meds won't keep her alive, at least not a quality life for an appreciable amount of time.

You did nothing wrong. It's time to let go of your unearned guilt.
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Guilt is a horrible burden and nobody can take it away from us. I wonder if sometimes the guilt we hold onto is a way of keeping our loved one close.

We do the best we can and when we are impatient, it is because we do not have the strength to be patient because we, ourselves, are worn out.

When a loved one stops taking meds (or other necessary steps) to live and they have a life-threatening illness, it might be time to start letting go. Letting go is not withdrawing support. It is realizing that YOU do not have the power to make your loved one live. You couldn't take his meds for him and if he didn't want to take them, maybe he was telling you in his own way that he wanted to leave this world. Instead of forcing him against his will, supporting him in the time he had left (which is what it sounds like you did) was what he needed. If you had the support of hospice during his last months, it might have helped you feel less guilty.

It is not unusual to suffer from periodic guilt after a loved one passes (I still feel a pang once in a while even more than 10 years after my MIL passed, although we took the best care of her that we could, up until her last breath). When we knew she only had a few weeks, at most, I asked for hospice care so we could take her home. They were wonderful but I felt so guilty after she passed that I could not even attend the their bereavement group (because as a DIL, I didn't feel I had the right to grieve like those who had lost a husband, child, or parent).

My parents moved in with us a few years ago and my dad passed a few months later. We had hospice with him and it was reassuring to hear what the nurses had to say about his care at the end, explaining why treating his UTI would have been futile. I still felt guilty after his passing, but was able to work through it with the help of their bereavement group.

My mother still lives with us. She has dementia and we have had some trying times with her paranoia of someone stealing her money. Getting up with her at night isn't easy (I still work full time) and although hospice helps get her up during the week - which is a huge help - I am responsible for her care probably at least 95% of the remaining time. Having a nurse come at least once a week, the chaplain come once a week, and a social worker every other week, is a great support too.

I pray that you will be able to get past the guilt, even though you will never get over your loss. Reaching out to this group is a good place to start receiving support. You may find it helpful to talk with to a grief counselor of some sort too.

Praying for you.
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You did not fail your father. You can't force meds on someone. In the hospital setting when a patient refuses medications the nurse will write a note patient refused. Please do not feel guilty. I give my 98 year old mom her daily meds, but if she refused I would not give them to her. I would do my best to encourage and explain how important the meds are and I would call her doctor to report if she refused her meds. I am quite sure the doctor would agree not to force her.. She would have a right as well as your father to refuse meds. I believe your father was aware he had little time left and that is probably why he refused. Before my father died he visited his doctor and he took my father off his cardiac meds because of low blood pressure. I told him he will go into CHF and he did, he passed within a few weeks. It was his time. He would have died with or without his meds in my opinion. The doctor gave my father 2 years and he died in 4 days after he came home from the hospital. I am glad he did not suffer and went quickly and peacefully. You did not fail your father at all. He was fortunate to have you caring for him. I would suggest therapy to help you through these feelings. Wishing you peace and strength and sending my prayers to you.
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Dear cdnreader, it sounds to me like you were an amazing caregiver and very loving daughter. As other posters have said, you cannot force anyone to take their medication. That would be abuse. I too am beginning the struggle with giving my Mom with dementia her meds. It’s getting more challenging and at some point when I can no longer coax her, that will be that. What else is there to do? Hold them down and force them? Not the memory I want after my years of caregiving. You cared for your Dad with much love and he was lucky to have a daughter like you.
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Can I just say that your sense of guilt is TOTALLY misplaced. You went above and beyond, not just for dad but for so many others.

It was NOT YOUR FAULT your dad became grumpy and fought you on taking his pills.

And truly--what would they have bought him, anyway? Sounds like he was terminal and taking some pills would have just prolonged what was probably an unhappy end of life.

My FIL fought me the last 3 months of his life. He didn't want to take any more drugs. After he went to the hospital the last time, I stopped by his place to clean a little and get some clean clothes. I moved the recliner, and there in a pile were hundreds of pills. I was a young and somewhat too trusting CG at the time and assumed if I handed him his meds, he was taking them.

IN the end, he probably died a few weeks, at the most, sooner than he would have. Maybe, we don't know.

At any rate, I had zero guilt, I hadn't done anything wrong!

It has now become part of the legend of Grandpa and how he got his own way.

Be kind to yourself, OK? The 'shoulda-woulda-coulda's will drive you crazy and in the end, the same result is there. You did wonderfully. dad died in a loving place and with someone he loved. Not everybody gets that.
Helpful Answer (3)

I’m so sorry that you are struggling with these emotions.

We always want the best for our loved ones. It’s hard to deal with difficult challenges.

The first thing that I would find comfort in is that he is at peace now. I am quite sure that he would wish for you to be at peace now.

There has never been a perfect caregiver at any point in time because there are no perfect people on this earth.

So, lower the standards for your behavior instead of punishing yourself for not being perfect.

You did everything that could be done. Some things are simply beyond our control.

It may be helpful to participate in grief counseling. Grief comes in waves. Some are gentle. Some knock us off our feet.

Take time to care for yourself. One step at the time you’re going to find your way back to a healthy place and find peace in your heart and soul.

Hoping that you are feeling better very soon.

Take care.
Helpful Answer (2)

You did Everything you could to help.. You did an Amazing job with your dad! You cannot make him take his medicine. If you tried to force him to take his medication, that could have been elder abuse. I struggle with the same problem with my mom. On the days she refuses her medicine, I chart it for the nurse, I let the care team know. I've told my mom, if she doesn't take her medicine, she will die. My mom has dementia, so this is a battle for us. Do Not blame yourself, because you did a Great job helping him!
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You have been an amazing caregiver. You did everything out of love and you tried your best. I’ve been struggling with the decision we made to put my mom in assisted living. She hated it then she fell in her apartment after 3 weeks and has brain damage and will have to have skilled nursing care as long as she lives. I keep thinking, if we just hadn’t moved her out of her house...then someone told me I had to stop beating myself up over it, that I did what I thought was best for her well being and did it all out of love. I still have moments of guilt but then I remember what my friend said. You were a blessing to your dad. He suffered from some of his own choices. You were a good daughter. Hope you’ll be able to have some closure soon. Hugs.
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