I got a call from hospice a few hours ago that Mom may be approaching end of life. I can’t get back to sleep as I’m just spinning. She has Parkinson’s with dementia, and has been in a downward spiral for the last six months. She’s living her worst nightmare. She never wanted her life to end this way. I go to see her nearly every day, but it feels more like obligation. I dread going. It’s hard to admit that I don’t really like my mom, I haven’t in a long time. She’s always been interfering and manipulative. She was divorced a long time ago, before my dad died. Basically has no one left in her life but me, my husband, and my son. My brother and his children are estranged from her, so everything‘s been up to me. So with the relief I feel about her nearing the end, I have tremendous guilt over feeling the way I do. Her health problems started about nine years ago and I have been her sole caregiver in the sense of making sure she gets her medicines, schedule and take her to appointments, grocery shopping, etc.
After a hospital admission this summer, it was clear she had to go to assisted-living. There was no way I would be able to take care of her at my home. I don’t have it in me. My husband and son would have been supportive, but I knew it would not work. I try not to feel guilty about that because I can see now I wouldn’t have been able to handle it anyway.
I guess I don’t really have a question, just looking for support through this difficult time with my complex feelings. I dread facing the end of life transition feeling the way I do.
And remember, it is not your fault she got old, or got Parkinson's, or got dementia.
Your situation is a little like mine, but no husband or son and my brother passed away 5 months ago.
It is hard to know things are coming to an end and you're not able to resolve things but do the best you can and know you've been doing the best you can.
If you decide not to go, it's OK. You will know when the time is right.
Im sorry you are going through this. Big (((hugs)))
I used to work in nursing homes . I watched so many daughters struggle with this . When they asked me if it was ok to go home , I always said yes . Most of the time the patient would wait until they were alone to die anyway . It is Ok to say your last goodbyes , and then go home and wait for the call . If you feel you have already said your good byes , it’s fine to tell the hospice that you have said your goodbyes and that you won’t be returning .
Grief that you never had the kind of mom you needed and wanted, and grief that she's now dying and you know things can never be different.
And of course you feel relief. All of us do who have had to care for someone for so many years, if we're honest.
I loved my late husband dearly and cared for him for many many years, the last 4 being the hardest and yes, I was relieved when he finally took his last breath as it was then that I could finally breath again.
And of course I was grieving along with feeling relief at the same time. It's an odd combination for sure, yet it's so very normal.
So don't beat yourself up and know that soon enough this chapter will be over and hopefully you can have some peace and closure.
And know that if needed hospice offers free grief counseling to family members, if you're struggling after your moms death.
May God bless you and keep you.
You were confronted by facts that caused you to be forced into making decisions that could not result in “happy endings”.
Don’t impose negative self descriptions on something over which you never had control, and don’t assume that she was or is now “living her worst nightmare”.
My own mother swore until she developed full blown dementia at 90 that she’d die in her own home, and lived like royalty in a very good SNF, loved by the staff and she loved them back. I went almost every day because I was luckily geographically within a couple mile of her SNF.
You have my full support. Be at peace with yourself. You have nothing to regret.
Although I’m not making assumptions about her being in a facility. She’s made it abundantly clear she would never want this. She only agreed to come here this summer as a “trial”. She’s always been a good patient, and staff love her, but she hated being away from her home. She always said she wanted to stay there until she “cocks up her toes”. I’m sorry for her she’s not getting the ending she wanted.
Thank you so much for your kind words and support.
You didn't cause this problem.
Be at peace. Relief after the death of a long ill and diminished parent is very normal.
My mom, who dearly loved my dad, spent the two nights of his wake telling everyone how glad she was that he was finally gone. He's been very ill for 10 years and was miserable. I took my cue from her and expressed great relief when she died.
Please don't feel guilt. I wish you peace as you go through this difficult time.
You didn't cause any of this.
You couldn't fix any of this.
Guilt infers responsibility. The G-word you need is grief. That your mom was so limited, lost so much of life thereby, robbed YOU of so much thereby, and that nothing could change it.
As to feeling relief I must tell you I had about the best two parents who ever lived. Each died in early to mid 90s. I felt relief. ENORMOUS RELIEF. They had BOTH expressing a willingness (in Dad's case an eagerness) to go to that final rest. They both were beginning to break down. And I was very relieved that they never had to have any more to worry, to hurt, to think about what was coming at them. And I never had to stand witness to their suffering.
These are normal feelings and you are expressing them. I loved my brother more than I can every tell you and he was Hansel to my Gretel my entire life, but he had probable early Lewy's and when sepsis took him (as he hoped something WOULD) I felt relief. Indeed I spoke to the universe to please take him to rest. It was terrified of loss of control, and this was what he wanted, and what I wanted for him, and nothing in that means I miss him the less or loved him the less.
So had you had the best folks in the world, surprise-surprise, you may well feel exactly as you do now.
My heart goes out to you. I wish you the best in this last time, and I wish life had been happier for your Mom, but we make our choices in life, and we don't all make the best ones.
And I can't take care of her and pay bills. I have absolutely no one to help me with this. While I always had everything I needed physically, she pretty much pretended I didn't exist my whole life and was either totally absent or pretty much disabled and around me all the time. I don't miss her now that she's out of the house. You can't miss someone you never met and didn't want to even bother with you, and you can't miss someone who you can't peel off you for years.
I dread a very very long death process more than end-of-life stuff.
My feelings are also very complex, but given the zero tools they gave me to deal with all this (in spite of her dealing with this with my father!!) I'm sure I'm doing everything I can right now. I have a good family lawyer who knows us for decades and understands I'm not made of money to pay him much.
I've been granted a looooot more foresight by the Universe to deal with future problems than thry ever had so I'm going to be starting the Medicaid labyrinth this week with my lawyer's help.
Lots of people our parents' age were too busy partying their life away or enjoying the vastly generous economy they grew up in to be bothered with messy things like signing houses over for security or end-of-life planning. They thought they'd live forever and BOY are they shocked when they don't.
I guess I'm venting too. But the thing is we are doing all we can. We're returning the care we've been granted. That's all we can do.
Most elderly feel that because they are old life needs to be on their terms. Too many other people involved with lives of their own for them to get what the want. It becomes what they need. Your Mom needed an AL. You did not need to physically take care of her. You found her a safe place where she received the care she needed. Her not having a son to help is of her doing. You did enough. Their is nothing more u could have done so no guilt. I of 4 kids was the one who could be guilted. But I refuse to feel guilty concerning the care of my Mom. Out of 3 surviving children, the other 2 men, it was me who was there for my Mom. I did my best with the information I was given. I did enough.
I and dh sat with her for a full week, playing her favorite music on the tv, and jumped thru the ceiling every time she let out a very loud hiccup. It was awful. We'd leave around dinnertime every day until the last day when the death rattle let us know she'd be dying very soon. We left and did not come back to see mom take her last breath because I did NOT want that to be my last memory of a very difficult 10.5 yr journey with her. I got the call at 9:30pm. I felt (and feel) no guilt because I did nothing wrong. I did everything imaginable for mom as her only child while she was in managed care for 10.5 years. I did plenty and so have you.
Sitting with someone as they take their final journey is irrelevant, imo, because I feel their soul departs their body long before the body expires. The mechanisms of the body shutting down is the ugliness WE get to witness while they are dancing free on the Other Side, watching the whole scene play out. Say your goodbyes and I love you's and thank you's before mom passes, and then give yourself permission to avoid what others tell you is "necessary" to do. You've already DONE what was necessary to do while she was alive.
She was damn lucky you had a conscience. I admire that.
I couldn’t take her suffering away but I did what I could to help her get through it as best I could.
It certainly wasn’t easy to be her primary caregiver for many years and if I had to do it over again I don’t think that I would make the same choices.
It would have been best to have made her stay in our home temporary and plan to be her advocate while she was in a facility. Hindsight is 20/20.
All family relationships have their challenges. It’s really hard to live with our parents even in the best circumstances.
I had my husband and children’s support. I did my best to meet everyone’s needs as a wife, mother and daughter to my mom but it is impossible to achieve all that we desire in this situation.
When my children said to me, “Mom if you need caring for later in life, we will care for you like you did for grandma,” I told them that I do not want them to sacrifice their lives for me.
I’m really glad that you didn’t push yourself to be your mother’s primary caregiver.
Personally, I feel it’s a job that I can’t recommend to anyone. The job becomes harder and harder as the years go by.
I do not wish to shame anyone for following their desire to care for their family member at home. I respect their choice in the matter.
No matter what the relationship and circumstances are, it’s difficult to watch someone suffer and eventually die. It stirs up many emotions within us.
I wish you peace as you make this last journey with your mom. There isn’t a right or wrong way to do things. Do whatever you need to do for you.
I couldn’t bear to see my mother draw her last breath. I was with her often. I was with her a few hours before she died.
My mother knew that I loved her. I knew she loved me. Was everything perfect in our lives? Absolutely not. No one on this earth has a perfect life. If they say that they do, they are lying.
I take great comfort in knowing that the wonderful staff at my mother’s end of life hospice care home kept her comfortable. I will always be grateful to them.
I'm sorry you're going through this, it's extremely hard on us Caregivers. Mentally, physically and emotionally.
My best to you. Hugs
see the good in her.
tell her what she did that was good.
lilo and stitch.. found the good in that thing.,
think I’m going to watch it again..