How did you feel when you realized the end is nearing with your Mom's Alzheimer's journey?

Abby Rose,
Thank you for your heartfelt post. My Mom, 93, has been in home hospice with us in our home for the past several months. She is cognizant and has mostly bad days with some really good days every once in a while, though they don't last. We are trying to make her as comfortable as possible with as much interaction as she is receptive to, but I see her gradually but steadily slipping away. My Mom and I have always been very close and the best of friends. Watching this process is the most difficult experience of my life. My Dad also lived with us and had home hospice for about a month before he passed from old age and his body just giving out. He was here, comfortable, and able to interact with us and enjoy the company 24x7 which thoroughly enriched his quality of life. I understand completely your wish to be there for your Mom and to hold her hand, and be there until she takes her last breath in this world. I intend to do the same for my Mom, as I did for my Dad. I promised them both that I would never allow them to be taken to a facility, and have done everything humanely possible to keep that promise. Home hospice is a blessing and they monitor her and are very helpful to us, as we could never do all of what they do alone. I would suggest moving your Mom either into a hospice facility during her final weeks, as the level of care is so much more personal and centered around her needs. The work they do is nothing short of amazing and tremendous. If moving her into your home with home hospice is not possible, then a hospice facility would be the next best thing. We have adjusted our routine to care for my Mom and that was just our personal decision. Yes, it's challenging and sometimes very stressful, but I know that my Mom is right upstairs where she is comfortable in her own room with all of her things that she loves and finds comfort in, and we can spend as much time as we want or that she wants with her just keeping her company or just holding her hand while she talks or sleeps. It is a very personal decision for everyone, and I know how you feel seeing your Mom in this final phase of her journey. I want to spend as much time with my Mom as I can while working from home and that is why we chose to have her here with us. It also allows us to take care of our own home while caring for her around the clock- no more running back and forth, or leaving her at night, dreading to get that phone call before morning. A tremendous sacrifice, yes, but it makes my heart feel good about providing for her during this final phase of her life. Do what you feel your heart is telling you. I would undoubtedly recommend moving her, if not into your home with home hospice care, then into a hospice facility for sure. Hospice care staff are truly angels on this earth! Prayers for you during this very difficult time.

AbbyRose: This is difficult for you. Prayers sent.

We placed Mom on hospice yesterday,, today she is sleeping all day, doubled her morphine, hospital bed in and they told me "maybe 5 days including the funeral".. not in a bad way.. I asked and wanted to know. ( My hospital where I work in is in COVID crisis and I wanted to be honest with my manager) I did ask about the hospice home that is affiliated with our Hospice, it is wonderful. They said right now it is full, and even there it is now only 2 visitors, the same 2 from start to finish. So that would rule out DD if husband wanted to visit. So for us the hospice home was not a good option. Yes you will be able to go, but no one else so not really that different from where you are now, and COVID can be in the hospice home also. Just be sure to follow the rules, and love the time you have left as you love your mother.

I'm so sorry that you're having to deal with losing your mom during the COVID pandemic. I'm sure this makes it much harder than it would have been otherwise. I was fortunate enough to be with my mom as she died at home. Hospice came, but my brother & I took care of her in shifts. I understood the meds & how they would help her & educated my brother so that he could take over when I went home. As much as I tried to prepare my family, when she passed it was still very hard. I spent days talking to her about family & how much I loved & appreciated she was to all. I told her about her dog which I know would make her happy. Holding her hand, giving hugs, trying to soak in as much as I could, but it still wasn't enough. She died 7/18/18 & I still miss her so much. Prayers & hugs to you & spend what time you can with her knowing that it's a comfort to both of you. 🙏💜

I would be very hesitant to move her at this point. You don't want to cause her additional distress or pain.

A hospice facility won't necessarily be any safer for you to visit.

I'm going through the same thing right now with my mom, and bringing hospice in over the weekend has lifted a great load off me. I've been through this with my dad already, and I am so glad to have the hospice folks by my side once again.

Take advantage of the support hospice offers the family, and be open with her nursing home about your desire to be with your mom. I know my mom's place will let you be with your loved one once they're in active dying mode, and I can certainly be outside her window anytime I want.

I feel nothing but relief at this point, because I know we've shifted away from fighting to make it through each day, and now we're truly focused on making Mom comfortable. She may be gone in a week, or in six months, but I'm comfortable knowing we won't be going to hospitals anymore, or poking or prodding her. I was able to hold her hand on Saturday as they unloaded her from the ambulance when they brought her back from the hospital. It was only the second time since last March that I was allowed to be in the same room with her, but it was enough.

I hope to hold her hand again before she dies, but she knows I love her and I know she loves me. That's ingrained over a lifetime, not just in a few minutes at the end, so try to remember your mother loves you as you love her. She knows.

Seems like people are not reading your words here. I think moving your mother into a hospice home is a good idea. Not YOUR home, a hospice home. Then you can go visit her and hold her hand w/o being (hopefully) subjected to active Covid cases in the facility where she's currently at.

I know for myself, I will feel relieved when it's time for my mother to pass. Dementia and Alzheimer's combined with advanced old age is nobody's friend, and no way to live, for the patient OR their family. I strongly believe that life is eternal, and that your mother will only transition from this phase of her life to a new phase, where she's free of all pain and suffering, and her mind is restored to what it once was before she became ill. When I read the eulogy I wrote for my father, I rejoiced in the knowledge that he'd gotten rid of his wheelchair & brain tumor, and was now dancing with his friends & siblings in Heaven with God. For that I was grateful.

I am sorry you are going through this terrible time; I know how much it hurts to watch a loved one fade away. May God bless you & give you the strength to endure this trial with peace and acceptance.

I am so sorry that you are going through this. Praying for your peace during this difficult time.

Having her in Hospice Home care is a real challenge. That means almost 80 percent of her care will fall on you. You need to make sure you are up for the hard work and heart aches. She will cry out, she might get up at night and fall. There are accidents in diapers and the day to day watching them fade away.
Having them pass at home is tough too. Yes, you can hold her hand. But be sure, really be sure you are aware of what you are getting yourself into.

Didn't know I needed to see this, this morning, and listen to all these stories. The "longest goodbye" is coming along for our family. Every day a new "thing" happens and we struggle to adapt and be creative and hope. Yet we know it is coming, coming, coming. I want to thank everyone here who reaches out and shares. This is so precious to feel a circle of fellow travelers.

We cry because we care.

Being with your mom in these final moments is important to you. Talk with the administration of her facility to make sure that you will always have access, no matter what the COVID circumstances. If they say "yes", please wear a face mask, a cover gown, wash your hands frequently, and bathe when your return from each visit. There is no guarantee that moving your mother will keep her - and you - from COVID exposure.

Try to spend each time with your mom remembering the good days you had together. Tell her stories of fun times you had together. Tell her about what you admire about her. Remind her that you love her and that you will be ok when she leaves. Assure her that it is alright to leave when she is ready.

As an RN, I have cared for many people who have passed. Almost every one had a "task" that needed completing before passing: visit from all loved ones, reassurances that pets, dependent family members, and belongings were cared for; last rites... Whatever is important to your mother become those "last tasks;" help her complete them.

How about ZOOM software to see people via an add on to telephone calls?. Court systems around the country are using it. The cost of the product is less then $100.00 per person! (I do NOT own stock in that company).

HI! I kinda went thru the same journey. I was told that with alzhemer's it is called "the longest goodbye". I felt that I was in control most of the time, but in the end reality set in. It's overwhelming even though you know and feel relief. She was at peace. It was the first time that I felt that much sadness. And then I was forced to watch and feel my father's grief and sadness. They were married for 65 years, and were in the same kindergarten class. Truly life Iong partners. I feel blessed to have witnessed true love. Now my dad just waits for the time he can be with her. I only wish that I could have lived a life of love like theirs. So special!

morphine and ativan to relieve the pain from mind and body.. ativan is the other part of this.. not just morphine...

I would think at this stage, a massive change for her like moving to your home would be very disorienting and difficult for her.

Abby,

So touched by your remarks, which are so timely for me. So touched by the answers by others. Let me offer virtual (((((hugs)))) to all of you who have lost or are currently watching loved ones ebb away.

Abby, I won't offer platitudes, because they aren't much comfort. The fact that you are "ready to let your mom go" says a lot. You've accepted her passing is imminent; that God is in charge of life and death. I have prayed the same prayers.

On her GP's recommendation, sis and I just placed Mom in hospice, and though she has yet to be classified as "in transition", in my heart I know she could leave us tonight, or stay with us for months.

My relationship with Mom hasn't always been easy. We never had the mother-daughter relationship I wanted. But conscious as I am of my own shortcomings, I forgive her. For years now, I've been her advocate and protector. I'll continue to do everything possible to ensure her last days, weeks, months are as free from worries and pain as possible. By what you've written, I know you will, too. We love actively, not passively, to the very end. God be with you during this difficult time.

I am in a very similar situation. I believe Dad is getting good care at his AL and with Hospice. I have been like a mother bear in advocating for him, and content I have done all I can to ensure he's in the best possible situation. I am grateful that I am allowed to visit each day, even though they are on lockdown from recent COVID infections. I visit daily, feed him if he's alert, play music, put lotion on his hands, ensure that he's comfortable, report any concerns to the nursing staff .... He's not alert enough to watch a movie, or for me to read to him, or look at photos, or have any real conversation...what more can I do during visits?

There's no easy way to watch a loved one slowly die.
I did this with my sister the last 3 months of her life which I had her in my home and gave her my bedroom since it was the only one downstairs.
Death Sucks!
Just make tge last minutes count znd pray that she dies in her sleep before her pain is too much to be handles even with morphine.

Prayers

Dear ABBYROSE. Your entry brought me to tears!!!!!!! And reflected much of what took place in my and my wife's ending life.

Thank you for sharing. My wife died in my presence just over a year ago,,,,,,these are "events" that will last in my mind forever. As hard as this was and is, if I had it to do over again, I would NOT HESITATE to do it! But with the great information sharing such as here, I know I would do "it" even better!

Paul

make sure he is comfortable and not in pain. be there to check and advocate.

I'm in the same spot as you are. Today I'm bringing my mother back to her nursing home on hospice care after being in the hospital since December 17. It's time for her to rest.

The hard thing for me is how "messy" this end is. My dad died at home six weeks after his cancer diagnosis, and while it was a short time to say goodbye, we were all with him, and nothing went unsaid. It was a beautiful end, all in all.

My mother, like yours, has dementia. I don't know if she knows who I am. She's taking the long, circuitous route out. Add in Covid and no visitors allowed to the mix, and I'm not sure how I'm feeling. I'm just wiped out.

Today I'll be sitting in the parking lot of her nursing home hoping to intercept the ambulance that brings her home so I can get a glimpse of her as they move her back in. Every glimpse may be the last one, but I take what I can get. I don't want her to be afraid, and I think she's been terrified for the last two weeks.

I have no idea how I'll react when this is all over. The care of my mother, like caring for my kids as they were growing up, has been my occupation. I remember when my last child left for college I felt like I was suddenly unemployed, and I have a feeling I'll feel like that again soon.

Hang in there. I have no advice for you except to say you aren't alone.

My mom was 99!!!, she had zero quality of life, lived in a nursing home and was as helpless as a newborn. And still when I got that call in the night asking whether they should transport her to the hospital I hesitated, just for a second.

It is difficult.
I thought I was prepared.
I cared for my Husband of 32 years, the last 12 with a diagnosis of Alzheimer's.
I thought I was ready, prepared. The morning he died I felt as though someone had ripped my heart from my chest and stomped on it! I do not know how I could have produced that many tears. (4 years later writing this I am still weepy)
Logic tells me the tears are "selfish" that it is for me that I cry.
I miss him. But he was not the man that I met and fell in love with. The one with the fast smile, sparkling blue eyes and a kind heart.
He was a shell, confined to bed, the blue eyes vacant, the smile all but gone.
He would not have wanted to remain as he was.
He is free now.
I remember him
I keep him alive in my heart, in the stories I tell people, when I cook a meal he particularly loved, when I look at my grandkids, he is there.
Ok, I am more than a bit weepy....
Your mom will always be with you. Walking down the street, glance in a store window and you will see her reflection not yours. Sometimes your smile in the mirror will be hers. Once in a while you will smell her perfume.
Thank her. You are the best parts of her.

My Mother died in a hospice facility of Alzheimer’s 4 years ago. She was only there a week. She was very agitated so they gave her sedatives and she slept for most of the time she had left. I was okay with the decisions to sedate her and let her live her short time peacefully. She had often told me that she didn’t want to continue to live if she ever got Alzheimer’s (her mother died of the same disease) - to let her go. I feel as if I obeyed her wishes. Her last day of life I played her favorite songs on her pillow with my iPhone. She was unresponsive, but I believe she could hear them.
Let her go - sometimes it’s kinder.

Abby, this is never easy.

When my mom started the transition she had been on hospice care for about eight months. It was a relief, and it is ok to think and feel that way. Many do.

My mom had become so sick, and her agitation was not ever able to be relieved or controlled. Her only relief was strong meds to help her cope.

It truly was a load off to have her reach that stage. Finally, mom would be released from the dreadful disease that was killing her one brain cell at a time. Gone bit by bit. Mom never would have wanted to live as she had been in those last few years.

Dear AbbyRose,
I was so sorry to read that your mom is nearing the end of her journey in this life.

I think everyone goes through different things when they know someone they love so dearly is passing away.

my mother passed away Dec. 20th, 2020 after contracting COVID In November this year. She did have Alzheimer’s and the COVID increased her dementia symptoms from late moderate stage to late stage. She refused to eat, drink or take any medication. She was hospitalized due to this refusal with the hope that the hospital would be able to help her and return her to how she was prior to COVID. Sadly that did not happen. After over a month of being in the hospital the drs told me that she needs end of life care. That sometimes people use getting a virus as a way to finally “sleep” and move on to the next phase. She was on the list for a Palliative Care Center but was refused due to having had COVID (which I understood, imagine your loved one is in palliative care and due to the stress free environment they actually improve but then contract COVID). She was returned to her residence for end of life care. The residence was so great. I was able to visit her since she was passing away and the team members there all thanked me for allowing her to pass with them. Since they knew her for over a year and wanted to be able to continue to care for her. After having been there for about 3 or 4 days I was called early in the morning to come to the residence because her breathing was indicative of a person who is actively dying. She was given morphine every few hours to keep her comfortable. She passed quickly. By early afternoon she had taken her last breath with my brother by her side.

while she was in the hospital I was just a ball of nerves, stress and fear. Once she was returned to her residence the fear remained but lessened a bit since I knew she was more comfortable and felt safe at her home. When they called me to see her I was so scared I was shaking. When I got there I saw how comfortable she appeared which helped to calm me down a bit. I didn’t have time to truly realize that she was passing before she passed. But luckily I went immediately into shock and was able to call her family overseas to let them know. I am still in shock and know once the shock wears off I will probably feel so much loss but for now I am more in organizing mode. Sadly my brother is not really doing much due to his grief so it all falls on me. I do feel overwhelmed trying to think of which government body needs to be advised, banks etc. I was blessed that my mother preplanned most of her funeral.

sorry I have noticed (especially as I am writing this) that my mind is all over the place and not truly focused. Back to your question right now I do feel somewhat relieved. Relieved that I can go to the washroom or have a shower without brining my phone in with me in case the hospital calls. And I can go out to pick up what I need without trying to time it with a hospital call. But I have had to change my ringtones as I now associate the old ones with stress and sadness and fear.

i think I am still at the beginning of the grief as my thoughts and feelings feel more lost/numb/disorganized.

sorry to not be able to give you a super clear response. Again I think it is a sign of the grief I am feeling at her passing. Gosh I think the above is so discombobulated I hope it makes some sense and answered your question a bit.

i am saying prayers for you and you lovely, loving beautiful mother.

please message me here if you need to vent, grieve or anything. You are not alone.

God bless.

You said it correctly when you said "This final walk with mom is harder than I thought". The final walk is very hard. While we know it's coming, and in some way are relieved that their suffering will be over, the realization, that that the end is coming and there's nothing we can do to stop it, can be very overwhelming.
My husband who had been in poor health for many years, with many issues, and had cheated death many times as well, while during his 6 week dying process, I too told myself that I was ready to let him go. However now that he's been gone for 3 1/2 months, I'm realizing that that is much easier said than done.
I'm glad you have a great support system, as that is so important. Just spend as much time as possible with her, and let your tears flow, as there is healing in our tears. God bless you in the days and weeks ahead.

It’s never easy to say goodbye. I am glad that you have a good support system.

Will keep you in my prayers and thoughts.

My experience with hospice for my brother as he was dying was very comforting. They kept him very comfortable.