Follow
Share

Mom has been adjusting surprisingly well to Assisted Living and I have been blessed to be able to spend time with her every other day. While she was in the hospital for her fall and developed delirium , Dr reviewed bloodwork, which was normal except for very low WBC, which may or may not be due to her age ( 93 in July) . She then went to rehab for strengthening and then into assisted living. Stat CBC and UTI lab work done today after my mom was in excruciating pain and couldn’t stand due to pain in her arms and legs developed last night and I stayed with her all day today. NP called me tonight and after consulting with Physician, feels that leukemia or lymphoma is a strong possibility. Mom is also in moderate stage of undifferentiated dementia and becoming much more confused. It is breaking my heart, as we have gotten very close these past few months after years of a very tenuous relationship. I can’t stop crying and am in shock because this happened so quickly, 2 days ago we were laughing at her facility bingo game and eating burgers together. Although, she was in a lot of pain and had to stop walking with her walker often due to weakness. I even was able to get her the new gel mattress she has been wanting, and it was delivered this morning before I got the news that’s how much I have been blindsided and am in total shock. Today while crying from the pain, she told me she missed my dad and wanted to die. NP agreed with me as POAHC that chemo probably would put her through a lot more suffering at her age and because of her frailty and overall health...Hospice will be starting next week, and ramping up to more robust pain meds this evening. I am agonizing over whether or not to be honest with mom, who has always struggled with anxiety and depression...Prayers needed .I am so afraid that she will be put through an agonizing and protracted death...but then I pray that we have more time together, but not at the expense of her quality of life. This is so hard. I don’t know how much time I will have her and am feeling so guilty that I may have missed signs of how much she had been struggling ...and maybe her nasty outburst toward me and my husband may have been a combination of undiagnosed dementia and now, cancer. I keep holding on to the small bit of comfort that she loves the senior community where she had been living independently for over 6 years after my dad died, and has continued to receive great care and TLC in the Assisted Living wing in the same building she has lived and made friends at. Not sure what to do and how honest to be with her. I don’t want to cause any more turmoil and pain for her but also want to honor any last wishes she may want to have honored. She and my dad pre-arranged their funerals, and I think I have been able to coax my estranged brother into finally contacting her.

This discussion has been closed for comment. Start a New Discussion.
Find Care & Housing
(((((ty))))) We can never tell when the end will come or whether we will be there. Sometimes people pass when their family member has stepped out of the room for a few minutes. I got the phone call from the NH, flew to be with my mother and saw her on the day I flew down. She recognized me. I went to a hotel overnight, I have CFS/FM and need rest and the next morning found the roads were black ice and buses were in the ditch. Long story short I called the NH saying I was having trouble getting there b/c of the road conditions and they told me she had just passed peacefully. Wasn't my plan but,,.

Please look after yourself. Your husband and you do deserve to live your lives the best you can. Your mum has good care where she is. Listen to the hospice people.
(3)
Report

Tygyr, my mom lived for 4 1/2 years post stroke, post fractured hip with pretty severe CHF in a nursing home.

She went in eligible for Hospice which we didn't use until the very end.

My advice would be to plan trips, travel and buy the best travel insurance you can.

Make arrangements with the AL and the funeral home for mom's remains to be stored until you return.

My brothers and I all traveled while mom was in the NH, (never at the same time) with the understanding that we would wait until we could all gather for the funeral.

As you can tell, we are an rather unsentimental group and we don't rush to deathbeds. We say goodbye to each other every time, knowing it may be the last.
(4)
Report

tygrilly,

You have been through so much. This is a challenging period in your life. I wish you peace as you continue on in your caregiving journey.

Please don’t neglect yourself while caring for your mom. Take care.
(3)
Report

I have been trying to spend as much time as possible with mom, aged 92, diagnosed with Lymphoma and Alzheimers. Her AL is less than 10 minutes from my house and I have been doing her personal laundry and trying to spend at least an hour with her everyday. It makes me happy to be able to help her and keep her company. She is very tired and weak..but there are also days when she seems less confused and a bit stronger and able to walk with her walker. Hospice has been involved for a little over a week. Nurse Practioner feels that end of life will be sooner rather than later but not set in stone , because without painful bone marrow biopsy, not sure if it is aggressive or slower moving . ...Re my own health...I have Chronic Lyme and also now have long COVID which has kicked my Lyme related COPD into high gear. My husband survived a near fatal heart attack and lost about 25% heart function. Before mom was diagnosed after her fall, both of our Drs had encouraged us to travel while we still could ...my Dr thinks I may have to be on oxygen in the not too far future....so we had planned 3 small 2-3 day trips this spring and summer and one large trip to Mexico in November (cancelled 6 x so far due to COVID) with all our kids and grandkids. I feel very guilty and selfish even contemplating traveling now. with moms condition so uncertain....but also know that my husband and I deserve to make our own memories while we are still physically able to enjoy doing so. My kids and grandkids live about 5 hours a way by car and we also would like to see them soon again. I am 68 and husband is 72 . This is so hard to know what to do..the hospice people have encouraged me to go on with my own life , but Im so worried that something will happen when we are gone. We could hop on a plane and get home..but just dont want to think of her being alone at the end if I couldnt get there in time. My brother refuses to call or visit her and she keeps asking for him. So I am pretty alone and her only family left.
(5)
Report

You did and are doing a great thing for mom. She's happy in AL. She's quite old and now ill so what are your choices besides hospice for comfort care? Only God has a say in what happens next here, my friend. No matter what you grieve over, or how much guilt you feel compelled to heap on yourself unnecessarily, you have no say in the process of what her body does next. A bone marrow biopsy is a very painful thing.... I watched my dh, a 63 yo strong robust man, holler out in agony when he had one. Plus, what's the difference what disease is revealed by such a test if chemo is not an option? I WOULD NEVER even entertain such a thought! Chemo itself can kill the woman and THEN what? Then it's Your Fault for making such a decision? Nope.

Let go and leave God in charge of mom's future now, she's in good hands. All you want to do, imo, is keep her comfy and spare her ALL the ugly cancer details bc how can such knowledge possibly help her? You'll ruin her peace of mind with such news! I know from where I speak. At her age and in her condition, ignorance is bliss and the biggest parting gift you can possibly bestow upon her.

Let yourself off the chosen hook you're dangling from now. Yes, you're sad, who wouldn't be witnessing such a thing? But remember that mom's lived 9 decades + which is cause for celebration! Not everyone gets such a magnificent opportunity to do so, and it's a gift. Keeping her comfy and surrounded by loving friends and family right now will ease her transition to the next phase of her eternal life, where SHE will be watching over YOU soon.

May God bless you both as you strive for acceptance of such a loss.
(4)
Report

Tygrilly,

Wishing you and your family peace during this difficult time.
(2)
Report

Meeting with hospice tomorrow .Her hospice admitting diagnoses are Alzheimers Disease and Lymphoma. Yesterday, hubby and I had lunch with her and invited her new best friend also from Assisted Living in the main dining room..which is very fancy and gives her a break from Assisted Living. It was a good day..mom ate most of her sandwich and many of her friends from Independent Living wing came to say hi to her. She was able to walk with her walker all the way there. Today, she was clearly depressed and in a lot of pain and said she is " living a nightmare". This is tearing my heart out...I know she could not tolerate chemo and bone marrow biopsy..treatment would likely oniy give her another few months.......and I know that this will be a cruel and scary rollercoaster for both of us. Please pray for my mom....I will be joining a grief group at our church. After so many years of conflict between us, I never believed it would hit me this hard. But I am so thankful that we have both foregiven each ..as long overdue as it was...
(4)
Report

So sorry. Just look at it as you and Mom were able to reconcile before she passed. That you now have some good memories.

You can tell her that the new people a new employees. They really won't be there enough to make a difference. Just as the Hospice staff not to tell her who they are. If Mom asks if its Hospice, be honest. Hospice is for keeping Mom comfortable and pain free. You'll have the AL aides there for Mom when Hospice isn't.
(2)
Report

Tygrlly1
Thank you for updating us. I’m glad both you and your mom feel better.

Good luck with the addition of hospice. I like that you are saying that she will have more help with her meds, to make sure they are working. That sounds comforting and it will be.

Let us know how she’s doing and do come back to the forum for support.
(2)
Report

Thank you all so much...we have a snowstorm here and I cant get out to be with her until tomorrow but aide did get her phone to her and she sounded better...she went to breakfast there ( walked with her walker) and said her sleep in new bed was "wonderful" .....sounds like pain is better controlled. I like the idea of telling her she has an infection and I will tell her she will need more people to check her to see how her new pain meds are working....we went through hospice with my dad, and she will know something is up when hospice starts next week and she will be seeing new people coming in to her room. Im a bit stronger today, and more relieved that I could at least talk to her. She was not answering her phone when I called several times this morning , so Im very relieved that we could talk, and she seems to be doing a bit better today. All your support means the world to me....Ive been on this long journey alone..but it is a big comfort to know this community exists and that we can understand and support each other...
(3)
Report

I'm in the camp of telling her what comforts her in the moment (but short of leading her to believe in a miraculous recovery). People with dementia cannot process truth like a normal person. They also don't process pain in the same way they used to, either.

Just keep giving her reassurances that you're there, you love her, etc. I also like the suggestion by AnnReid of surrounding her with her favorite things. 

If your brother does visit please give him a primer about what to say and not to say so that he doesn't upset your Mom. If he's been away he has a big learning curve, like we have all had on this journey. I wish you much wisdom and peace in your hearts.
(4)
Report

I love Ann's suggestion of surrounding her with her favorite things.

Sending hugs and prayers for this new turn in your Mom's life.
(4)
Report

Being “honest” can be highly overrated when negotiating with a frail, very elderly person who is already suffering, and adding the question mark of “undifferentiated dementia” may be making your decision making even more confusing.

Dementia may mean that her perceptions and recollections are progressively dimming and erratic. If you know of any specific last wishes previously described, take comfort yourself from honoring them. You don’t need to worry about precision or detail. You will be honoring who she was without getting into what MAY become troubling to her.

Is it possible that because of storm clouds in your mutual past, you may be overthinking what’s happening now, in your mutual present?

Make a list of all the things she loves and cares about now, and surround her with all of them you can.

Of course if your brother is amenable, he should casually touch base for a brief visit, but only if you and he can agree that you both stay in the moment with mom. If he wants to have a second or more visit, great.

You’re clearly focused on your mother and the love you share. Can you focus a little on being at peace with simplifying your perspective in her present, rather than going too far into a currently undefined future?
(4)
Report

tygrily1

I am sorry to hear this news about your mom. Especially that she is in pain. I do hope the meds she receives tonight make her more comfortable.
In reading your post the second time, it seems that you don’t have an actual diagnosis so perhaps you can let that guide you a bit on what you tell your mom.

As much as my aunt (96, dementia) forgets I think she would remember if I used the C word. In your place I might tell her that her lab work indicates an infection and that the new meds should make her feel better. That is the truth and will give you a bit more time to decide what and when you want to share any other details with her.

You are so fortunate to have reconnected with your mom and that you have been enjoying spending time with her and being her daughter.
I remember your recent post about her apologizing. I hope she enjoys her new gel mattress and you get to enjoy more laughter after getting the pain managed. Hugs
(4)
Report

This discussion has been closed for comment. Start a New Discussion.
Start a Discussion
Subscribe to
Our Newsletter