I had a strong desire to call my mom today.
I haven’t called mom very frequently, no more than once a week because I needed time for myself to adjust after my caregiver days ended.
Then as most of you know, my husband got prostate cancer so naturally my heart was first and foremost with him.
He is the love of my life. Next month we will celebrate 43 years of marriage.
As most of you know, my brothers and I have a strained relationship.
I took care of mom for 20 years all alone as the primary caregiver, 15 years in my home and was heading for completely burning out. I tried to involve my brothers in mom’s care but they weren’t interested in anything but themselves.
When my brothers were involved it was to criticize me because mom had a habit of stirring the pot, which caused stress for everyone.
I got fed up and told my mom to go live with my brother and sister in law. I had done more than my share.
Needless to say, this is never the relationship that anyone wishes to have with family members. I always desired to live in harmony.
Sometimes family dynamics evolve into complex situations filled with a mixed bag of emotions.
I don’t know how I managed to be the primary caregiver for as long as I did. Parkinson’s disease is brutal.
I also cared for my oldest brother and dad before they died. I have seen so much sadness in my life due to various issues.
It changed me watching my mother suffer endlessly. I lived in depression and had enormous anxiety as a primary caregiver without help.
My brother answered the phone when I called mom today.
He told me that mom is now bed bound in a hospice facility. I feel relieved that she is now in a facility. It’s truly for the best.
One of our long time posters (Lealonnie) comforted me throughout my entire caregiving and afterwards. I will forever be grateful. She has a heart of gold and truly understands suffering. She told me that my brother would see what I went through with my mom as he cared for her in his home. She was 100 percent correct!
We needed distance from each other in order for healing to occur. He apologized to me and said, “I now know what you went through. I am so sorry that I wasn’t a brother for you to talk to. I was wrong and should have supported you.” I cried so hard hearing these words.
When he took over mom’s care I did not interfere as he did with me. Mom would never complain to me about him because she is very old fashioned and won’t criticize a man. It’s common for some women in mom’s era to feel like the man has authority over women. Mom is 95.
I am so grateful for everyone on this forum. You have helped me more than you know. I can’t list everyone because the list would be too long but I hope you know how much I have appreciated your help.
This is a very emotional time for me. I will be going to see my mom very soon.
I wish you peace in your future I know that many of us on this forum will be thinking of you.
I know that I sound like a broken record but it makes me feel better knowing that I have support from people who have gone through this or going through it now.
My brother just called and told me quite a bit of what mom’s nurse told him this morning. As you know we have to rotate our visits due to only two at the time because of Covid.
My brother was there this morning and I am going later today after lunch.
I am too upset now to go into details. I’m still trying to process her condition. I hate that she has this dreadful disease.
Basically, the nurse has said that in her experience of seeing patients like mom in end stage Parkinson’s disease, she most likely has about two weeks left.
The hospice staff is amazing and I honestly don’t know what we would do without them.
I don’t know how all of you have gotten through seeing their loved ones going through serious medical conditions while they are at home.
My heart breaks for all of you because I can’t imagine how hard it is for you to do that. I don’t know if I would have the emotional or physical strength to do it at home.
I had a difficult time with my emotions when mom was living with me. It’s devastating to constantly see them suffer.
All of you are certainly in my prayers.
Please tell me that I am going to get through this period without falling apart. I find myself crying more and more.
I don’t know exactly what I am afraid of. Does that make sense? When daddy died I had mom. Now, I find myself feeling lost.
I know it’s her time and that we all must face our mortality one day but it isn’t easy to face losing those we love. I keep telling myself that mom is ready. I surely hope that I am correct.
Also, my girls are so sensitive. They adore her. My oldest daughter has health issues and I don’t want to make her feel badly about not being with her grandmother due to her health issues.
My youngest one moved out of state and very busy with work.
Yet, I don’t want time to slip away and not tell them about their grandmother’s decline and have it be a shock or have them feel like I left them out.
Please tell me how you handled the grandchildren issues with your parents. I could use some of your suggestions regarding your experience.
Thanks so much for listening to me.
All my love to each and every one of you!
I was with my mom at the end (hadn't planned it thst wsy, it just happened. By dear SIL was there as well, because I wouldn't have handled it well by myself.
Play music for your mom when you go, especially stuff from her childhood, teen and dating years. And opera, if she is a buff.
I would call both your daughters and simply tell them what the nurse is tellung you (I would wait to hear it direcly from the nurse yourself). Do they want yo see Gma one last time? That is up to them. Distance, in the case of your daughter in Colorado may mean she needs to make a choice between coming home now OR coming home for the funeral.
Please keep in touch here and don't feel like you are a broken record. I basically posted my mom's last 3 days on here in real time; I took such comfort in reassurance from others.
(((((Hugs)))))).
Maybe part of my being uneasy is the fear of being alone with her when she dies.
I’ve never seen someone die before. I think that I am somewhat frightened by it.
I will tell my girls. I am going to wait until later today. I am not up to it right now. You’re right, they have decisions to make and I should give them the time to do so.
I know that it couldn’t have been easy for you either. If I remember correctly, your mom was in her 90’s too. It’s been a long journey!
The next time you visit your mom can you FaceTime with your daughters so they can talk to their grandmother? That’s what we did with my older son who was in NYC and unable to come home because of the Covid restrictions. We FaceTime with him every day!!
My best friends father passed away yesterday at the age of 98. My friend took care of him for 10 years. He had been hospitalized and then just went to a nursing home for rehabilitation last Wednesday and passed away on Sunday. She thought he was going to get better and was unable to see him. He had passed in his sleep. She was so upset that she wasn’t with him when he passed. I told her she had 10 years of caregiving for him. I told her he was grateful for everything she had done for him.
So what I am trying to say that if you are with your mother at the end, or if you are not really doesn’t matter. She knows that you love her. You have been going to visit her every day. She feels your love.
Hugs and prayers to you. You are strong. You will get through this.
Yes, we have been FaceTiming but mom can’t speak now so I don’t think I want to do it now.
I am concerned that it may upset them to see her like that over the phone and I don’t want mom to feel embarrassed or uncomfortable about not being able to respond.
Although if I catch her in a few lucid moments I will try to call the girls. I have to put the phone on speaker because she is nearly deaf.
She does read lips very well but not on my small iPhone screen. I was her interpreter when we FaceTimed.
I have told her when she got upset about not being able to speak words to me that words aren’t necessary.
She’s dozing off so much now. She’s so tired. She’s barely eating. She isn’t able to move at all now.
She hurts when the aide or nurse move her. They have no choice but to increase the pain meds.
Just a tough time all around. My main concern is for mom to be as comfortable as possible.
I know that is what matters the most. It’s what I would want for myself.
"Your grandma's heart's desire is to see you happy, and living your lives."
"There are no expectations from anyone for you to be at her bedside when she leaves this earthly existence".
For you too, NHWM. There are no requirements for you to watch someone die. Let the hospice nurses know if you cannot be present at her death. Maybe nearby in the waiting room, or taking a break with your brother, or at home.
When my loved one died, I was at home. All I could do was pick up the phone to support my loved ones when they called. No guilt. I could not be there at all due to Covid restrictions. 2020
When it is the end for me, please, please, no one put me on facetime!
No dying photos. No dead photos. My personal choice. It is a modest, personal, private time, imo.
My gosh, just a few days ago she was moisturizing her face before she FaceTimed! She had me remove her chin hair too. Honestly, I almost expected her to ask for lipstick.
She even asked the aide to put on her pretty nightgown for my kids when they FaceTimed. She loves my girls and they adore her.
My girls tell all of their friends how stylish their grandma is! She loves her hair just so, makeup, pretty clothes and before her Parkinson’s, she loved her fancy shoes.
I bought her beautiful purses to make up for not being able to wear fancy shoes!
Mom enjoyed FaceTiming earlier but I don’t think that she would now. Plus, she really isn’t coherent enough now.
If I can manage a phone call, that is enough.
I really like what you said about telling them that mom doesn’t expect them to be here. I think that is what I am going to say. Plus, I will tell them not to feel obligated for me.
If they can do the small service that we are planning, it will be wonderful but if they can’t I understand.
Thanks! This helped me a lot. You know, after my brother’s phone call, I got upset and I wasn’t thinking clearly.
Sorry that you weren’t able to be with your loved one. Covid changed a lot of things!
So, my Poa brother, SIL and I were in mom's NH room. Hospice had ordered morphine at ever shortening intervals due to pain and breathing issues. Theresa, dear friend of bro and SIL arrived from Virginia (we were all in the NH in Connecticut). As it happened, Sil and bro had been about to leave on vacation, so no food in their house. Mom seemed stable for the moment so bro and Theresa leave to do a quick grocery shop.
Mom started sinking fast; sil and I were playing opera, American Songbook, Big Band music. My eldest was supposed to leave for a long planned vacation to Ireland, so she was calling every 15 minutes to find out if she should cancel. In the middle of all this, Ikea calls to say that they are about to arrive at my apartment in Brooklyn to pick up 3 recalled dressers (that I hadn't yet emptied and that I had to ask my husband to take care of).
So, mom's breathing gets gurgly and we realize it's the end for real. Mom passes and we call the nurse in to confirm and the time of death is called.
Sil and I both start to cry and fall into each other's arms; the nurse joins in. And then, SIL and I stand back from each other and with huge grins, high 5 each other. It was truly a job well done; and at that moment, bro and friend Theresa walk into the room.
My brother got it immediately, but Theresa was, and to a certain extent still is somewhat scandalized by our irreverent behavior.
Death is like that. It can be a merry go round and a roller coaster of emotions. Just roll with the punches and hug your mom for me.
She couldn’t respond back but I do believe she heard him. They say that hearing is the last sense to go.
Big hug to you. Prayers to you and your mom during this difficult time. You will get through this!! I promise you!! You will get through this!!
That is funny!
It is definitely a roller coaster ride during this time.
Hey, interesting tidbit about New Orleans. We had one of the first opera houses in the country! It was a French Opera House.
New Orleans has a rich history in music, the opera and of course, jazz and many other genres are play here.
Mom adores music! She’s so hearing impaired now that she can barely hear it.
I just thought of someone that I hadn’t thought of in years.
I was young and single and renting a duplex in Gentilly.
My neighbor was completely deaf. He had a wife and a beautiful young son.
He worked the graveyard shift because he felt safer driving at that time due to being deaf.
His wife worked days. They were ships passing in the night.
He was Columbian. He grew up in Columbia. His wife was a gorgeous blonde from California.
He was a coffee lover like me. I would sit out on my porch and drink my morning coffee.
He would be coming home from working all night but would stop to chat with me for a while before crashing.
I knew some sign language and he taught me more. I learned to sign fairly well.
He and his wife were extremely fast signers. His son was learning to sign as well.
Anyway, he would tease me about playing my albums loudly.
I said to him, ‘I thought that it would be okay, your wife is at work. Your son is in daycare and you are deaf and sleeping!”
He said, “I feel the vibrations!” LOL So, I told him that I would turn my stereo down.
He had lost his hearing as a young boy. They were great neighbors. They were a sweet couple in their late 20’s.
Music is a universal language. I wish mom could hear it better.
Before Covid some of our local musicians would go into nursing homes and hospice houses and play for the residents.
It’s a beautiful gift to play music for others.
When mom could FaceTime, and coherent, I called my godson (nephew) and he had my great niece play the violin for my mom.
I put the phone on speaker and I heard her tell my niece (her great granddaughter) that it was beautiful.
She’s 16 and very talented. My godson plays guitar beautifully but my niece loves her violin and piano.
Daughter,
Every post I read your post I know that you understand my feelings because you express so many of my sentiments. It helps me so much feeling that I am not alone in my thoughts.
Elaine,
I know what you are saying. I firmly believe it too. Mom is so weak and tired now that she barely opens her eyes. She can’t speak anymore but she did struggle to get out ‘I love you’ to me yesterday.
They hear us. Absolutely! They do. You know it and I do too. Many others know it as well.
Thank you so much for your unending support.
I know that all of the signs of death are imminent.
I am in the middle of cooking. He had to go into the office today.
I am so tired. I just feel emotionally drained. I have to dish up dinner, it will be done in a few minutes and head over to hospice.
I’m a bundle of nerves. There goes dinner again. I can’t eat when I am upset.
I am so sorry to hear about your mom. I know it has been a very long road.
I pray that your mom and you find peace. Remember you have God's strength & grace. Also remember what I told you about bravery. You are a lot stronger than you think you are.
You'll be in my prayers.
Hugs!!!
She is totally unresponsive now. When my brother was with me, I felt better. I became uneasy when I was alone.
Her breathing sounded funny. I got scared and left. Then I felt bad about leaving.
I don’t know how to feel. I can’t sleep but I am exhausted.
I appreciate everyone’s prayers and thoughts. Please continue to pray.
I thought that I would handle this better.
They have mom on scheduled doses of morphine now to ward off any pain. They actually said that she can have it in between the scheduled dose if needed.
Her mouth is open a lot. They spoon feed her a bit of ice because she can’t drink from a straw now.
How long does this continue? It’s agonizing to watch. I’m on pins and needles waiting.
I hope it doesn't take your mother that long. It is agonizing to watch and wait for the inevitable. The nurse told us that at this stage of unresponsiveness, the person dying can still hear. If you talk to your mother, she can still hear you.
It is very unnerving to be alone with a dying person, so I get why you feel uneasy and scared. I would too.
Stay with us while you're with your mother, someone should be here to talk to you and keep you company through this forum.