Dementia, end of life and a family torn. Can anyone relate?

Started by

My 78 year old mother in law was diagnosed with Pick's Dementia, 3 years ago, it has been truly a slow but steady decline. Recently she has fallen several time in a short span, our caregiver, her also physically declining daughter placed her in the hospital on Tuesday, not telling anyone (I found out at a friends wake and I made the calls to let her sons know, this has been very common place since diagnosed...another issue of its own) on Friday evening all brothers were called out of work that mom was on her death bed, family rushed to hospital to find mom talking, laughing and moving around in bed. A catetered was given for sudden incontinence, no antibiotics, no IV, just incontinence and falling new symptoms. My husbands sister said that the doctor told her there was nothing more they could do for her, apparently Hospice somehow was mentioned. And the calls were made, we sat together with her nurse to be told that she did not see end of life, nor do I ( a long time CNA) or my sister in law (assistant DON at a quality nursing home). After all left room the two of us and nurse had small discussion about how doctor was upset family was called in for this meeting before he had time to talk to all family together. When asked if she believed this was about mom or sister, her look said it all (since she really could not). After doctor and hospice nurse visited, hospice nurse met with her children and said she was not hospice ready, after many objections from sister in law doctors were contacted and she will be placed in hospice care following a 20 day stay at a facility that is not my sister in laws, because our caregiver says we can not afford private care and mom was denied medicare? We un-ethnically know why that is, my husbands sister did not turn in bank statements because "that is private business..." It feels to the rest of us that is is about her not being able to or wanting to care for mom any longer but she will not "allow" her to come to anyone else's home...considering seeking guardianship, fearing tearing family apart, confused and crying...wondering if anyone else has been though anything similar or has any thoughts if this just us not ready to the end?


sounds like bank statement are the clue to why she wont allow any of the others to care for her-- if any are willing to take over the responsibility do it before you throw stones-its harder then you think unless you've done it long term for someone.
Please tell me you have seen an Attorney who specializes in Elder Law! Bank statements is definitely the issue, even if someone else takes over her care, the money will have to be discussed. I've been down this road before. Unfortunately money messes family's up. If you were told she was denied medicare, then someone knows her finances. Best of Luck, it's a touchy subject.
My heart goes out to you and your family. Having been through my own family issues I know how terribly emotional it can become. I was the one calling my brother and sister to come to mom's death bed, only to find her jolly and recovered.

Some times they rally when the absent children arrive. Sometimes they rally (at least my mom did) miraculously when a handsome doctor or lovely nurse paid attention to her. It was stunning... she would be near death! It was crushing to me.... I would struggle to get her to the hospital and all of a sudden, she became a different person. When everyone disappeared, we had to call some doctors for an appointment and all of a sudden, after everyone was gone, mom could no longer speak. I'd ask her what happened... and she would just say... she didn't know.

It was like living in the twilight zone for me. No one could possibly know what I was dealing with on a day to day basis with my brother in another country and my sister in another state.

Now my dear mom has passed away. The estate is ALL my job. I divvy things up and send one third to my brother, one third to my sister and one third to me... and ZERO for all the years of Crushing Heart Ache! I asked my brother if he would give me any consideration for all the work I'm doing. He said the past is past and now he might consider giving me ... for example $30/hour. $10 from him and $10 from my sister and I'd pay myself the other $10.... just for example.

You know what? For me, none of it is worth it... No matter what, I did what I wanted to. I was where I wanted to be... I wanted to be a good daughter and my mom was my family. I nearly died caring for her. My health was the worst ever, but I was there for her because I felt that was the right thing for me to do, what ever my brother or sister decided. They now have to live with themselves... for a very long time and I feel good about what I did. I wish them well and hope they feel OK too.

As for day to day handling of the crisis at the moment, I'd say... be as kind as you can be. Say you love your family members, tell them, hug them every chance you can. We can each make this ugly, or we can make a decision to be kind.

I imagine the person who is caring for your mom is going through overwhelming challenges... at 24 hours a day it can be daunting like no one else can possibly imagine. Waiting in the hospital for a doctor to show up to tell you all that things are going to be OK, can be hell! They can make you sit there for hours. Each minute, you are sitting on a hard chair, in a cold building, hoping someone will come to explain the situation to you... and the elder person, just rallies!!! Inexplicably!

Please consider ways you can be kind to all those around you. Greed. Pressure. Stress. Ugliness.... they end up doing nothing for no one.

I often repeat what someone told me here on this site. Every day, try to tell your loved ones that you love them and hug them, because one day it will all be over. For me those were GREAT words of wisdom and ... while I have several months of a hairy estate to deal with... some day even this will be over for me.

We can choose to find fault or we can choose to be kind. I'm struggling with that every day. It is NOT easy... I wake in the middle of the night with chest tightness and anxiety.... alone, challenged with the mountains of problems, but I always, always feel better and my heart feels lighter when I am kind.

I hope you can find a way that works best for you and for your family in the very, very long run, not just in the moment. Look to the future and try to be the kind of family you want...
Yeah this is common, it's hard to predict exactly when someone is going to die. It's even harder on the caregiver to know exactly what to do. Typical story, all the other people who aren't there everyday show up in a crisis & suddenly know exactly what to do, shame on those people for their lack of understanding.
Does this help to ...Change Your Thinking?

It will take just 37 seconds to read this and change your thinking..

Two men, both seriously ill, occupied the same hospital room.

One man was allowed to sit up in his bed for an hour each afternoon to help drain the fluid from his lungs.

His bed was next to the room's only window.

The other man had to spend all his time flat on his back.

The men talked for hours on end.

They spoke of their wives and families, their homes, their jobs, their involvement in the military service, where they had been on vacation..

Every afternoon, when the man in the bed by the window could sit up, he would pass the time by describing to his roommate all the things he could see outside the window.

The man in the other bed began to live for those one hour periods where his world would be broadened and enlivened by all the activity and colour of the world outside.

The window overlooked a park with a lovely lake.
Ducks and swans played on the water while children sailed their model boats. Young lovers walked arm in arm amidst flowers of every colour and a fine view of the city skyline could be seen in the distance.

As the man by the window described all this in exquisite details, the man on the other side of the room would close his eyes and imagine this picturesque scene.

One warm afternoon, the man by the window described a parade passing by.

Although the other man could not hear the band - he could see it in his mind's eye as the gentleman by the window portrayed it with descriptive words.

Days, weeks and months passed.

One morning, the day nurse arrived to bring water for their baths only to find the lifeless body of the man by the window, who had died peacefully in his sleep.

She was saddened and called the hospital attendants to take the body away.

As soon as it seemed appropriate, the other man asked if he could be moved next to the window. The nurse was happy to make the switch, and after making sure he was comfortable, she left him alone.

Slowly, painfully, he propped himself up on one elbow to take his first look at the real world outside.
He strained to slowly turn to look out the window besides the bed.

It faced a blank wall.

The man asked the nurse what could have compelled his deceased roommate who had described such wonderful things outside this window.

The nurse responded that the man was blind and could not even see the wall.

She said, 'Perhaps he just wanted to encourage you.'


There is tremendous happiness in making others happy, despite our own situations.
Shared grief is half the sorrow, but happiness when shared, is doubled.
If you want to feel rich, just count all the things you have that money can't buy.
'Today is a gift, that is why it is called The Present .'
Just a few thoughts:

1. You might want to try to find someone who specializes in family mediation for elders. These individuals can help the family to navigate some common pratfalls, and avoid the devastating dissolution that can occur in situations like the one you describe.
2. You might want to revisit your view of hospice care. It is true that some people are quite clearly at the end of life--it's what we tend to see when someone has cancer, for instance. But for people with organ system failure or dementia, the end won't look like that. They are likely to go up and down many times, be rescued, seem to be fine--and then, be gone. They may not follow the script we are so used to seeing on TV and in the movies, and so we might not realize that they are, in fact, living with an illness that may kill them.
3. Not sure what you mean about Medicare denial. Did you mean Medicaid?
4. The caregiver may be very overwhelmed with the many issues at play: health, legal, financial, familial. Is there any respite or support available to her? She doesn't want others coming to the home--but are there other ways to offer help and support? (Of course, not letting others in the home could be a red flag, and one you should not ignore.)
Best regards and best wishes that you are able to navigate this difficult time.
Don't feel bad for what you did; you acted on the information you had at the time. Everyone is right here, situations change fast especially with elderly and dementia -- good days and bad days and they can amazingly snap back from a crisis and you're left scratching your head after the "crisis".
Might be a good time to have a family meeting without your mom and discuss concerns in an open non-confrontational way. Set the ground rules up front for no hurt feelings or judgements -- just opportunity for everyone to speak their mind "how they perceive the situtation". Then perhaps, divide up responsibilities - money mgt, caregiving, etc. And for god's sake; maybe hire some help or respite for your sister or whoever has primary care responsibilities (its draining). If you can chip in fine, if your mom has means, then use that money to hire part time help (CNA or in-home care) for a few hours or more a week. Lastly, agree as a group how the next crisis and future will be addressed - NH? AL? Home care? understand the costs involved and estate implications if any. Maybe this will keep feelings from being hurt and resentment from building. In the end, you will be left with each other and it filters down to your children and their feelings/perceptions about extended family. I've never seen any happy endings with going to court and battling over care.
Thank you to you all!
Yes my husband and I are dealing with his sociopath sister who is now hiding his mom from him. Wonder why? She convinced the mom to add her to the bank account. His mom also has progressive dementia and we only have a little more time before his mom is totally incapacitated. Sil recently moved with the mom and won't tell us the address. We feel totally helpless! My heart goes out to you. There are so many of us and it doesn't feel like the law is on our side.
My Mom lives about 1,500 niles away from me, she also has dementia yet she does have moments of beung lucid. She has home care 24/7 due to falling issues, meds., etc. These people are not from an agency, just do home care. Somehow, one of them coerced or threatented her & she gave her Durable POA. I did not know that my Mom had alot of money until recently, yet recently she had told me she wanted me to have POA and divide all assets bet. my brother & myself when the time comes. She also told me her medical preferences at end of life. I agreed w/all she had said to me, many times in the past months. Now the woman w/POA refuses to let me speak to her on the phone or for her to call me & has instructed rhe other care takerds that they will be fired if she finds out that I spoke w/my Mom. She swears at me daily, yells me to stop calling, as SHE is in charge. I cannot seem to get any help from any agencies or Police Dept. this is so cruel to Mom & me, esp. since I have spoken to her almost daily for over 4yrs. What can I do, how to get help, & also revoke POA as all she wants is the house & my Mom's finances&belongings, why does the family have no legal rights & what about our love for her?? I'm heartbroken over this & I don't have $$ for an att'y as I'm disabled, I just want to speak w/my mOM, TELL HER i LOVE HER, AND KNOW HOW SHE'S FEELING, opps, can anyone pls. give me advise? Thank you. Sue

Keep the conversation going (or start a new one)

Please enter your Comment

Ask a Question

Reach thousands of elder care experts and family caregivers
Get answers in 10 minutes or less
Receive personalized caregiving advice and support