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

Follow
Share

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?

This discussion has been closed for comment. Start a New Discussion.
Find Care & Housing
15

Comments

Show:
Oh, wow, 413sue11, run, don't walk to your closest legal aid office. They will take your case pro bono if you don't have money. What her caregiver did was highly irregular, if not illegal. Contact her bank to put up a red flag on her account for unusual withdrawals. How did your mother get the POA forms? Does this caregiver have a stack of them in her car? When did they get witnesses? When did they both sign the papers in front of a justice of the peace? Have you seen the POA papers? Have there been other victims? You definitely need an attorney. Call around. Someone will help you. Try your Alzheimer's Association and Area Agency on Aging for a specialist in elder law.
(1)
Report

My husband was diagnosed with Pick's disease, a type of FTD, at age 55. He is now 65. That is ten years living with dementia, that's a sloooooow decline. He has been healthy physically except for a bout with bleeding ulcers about 6 years ago, cataract removal and extensive dental care. But mentally he has had no ability to talk for 6 years. He can only understand about a fourth of what we say, he is in a wheelchair for the last 3 years, he is totally incontinent and he cannot feed or dress himself. It's like caring for a 170 lb. baby. He began falling about four years ago due to an increasing numbness on his right side and could not learn to use a walker properly.
I can see why her daughter, your sister-in-law, would want to place her in a nursing home, especially if she has physical challenges herself. The physical toll on a sole caregiver is astronomical when helping transfer a patient from bed to chair to toilet to shower to chair and finally back to bed. Not to mention the constant vigilance, day and night when they are still mobile. I have been blessed with physical strength, a need for less sleep than average, and relatively few health problems myself since hubby has been in a wheelchair. And I finally got an electric hoist about a year ago, which was a great help.

Back to your MIL, you need to have that family meeting ASAP. Someone has to get guardianship or durable POA-it can be shared among several with one being named primary. POA documents are available on-line for health and/or finances for a small fee. You would need to fill them out, get them witnessed and sign them in front of a justice of the peace in most states. Then there will be no question of who is in charge. A guardianship is more expensive (my cost $1500), requires an attorney and at least one court hearing. Check with the bank to see who is on the checking account. Is your SIL even on it? Is it a revocable trust fund? If your sister-in-law that had been doing the caregiving is still willing to do the caregiving, get her some help. Dumping your mother in the nursing home without a true cause was a cry for help. Don't blame her.

I don't know what is causing the sister-in-law's decline, but perhaps she needs to be evaluated for dementia if she is misunderstanding the situation or the meaning of what is said. Pick's sometimes runs in families and it sometimes shows up around the age of fifty like my husband. He started having problems understanding what a movie was about and started repeating unusual phrases.
(0)
Report

413sue11 ... I don't personally have experience like you've described, but it seems to me you need a very good attorney, fast! Someone in the legal field who has expertise in this area.
(2)
Report

Let me add in relation to this thread and family reactions. My sisters and I have not all agreed at all and angry comments started when we realized the expenses of care and how to go about dealing with our parents with dementia. Kindness brought things back from the brink of an almost total collapse in anxiety world. we still wrestle with it. At this moment, the knot has not left my stomach in days. uggh. Having family that all 'get it' helps so very much. I wish everyone out there had that. It is hard to find a place that feels safe and secure with so much anxiety and stress. the challenge of that can bring us gifts that we may not have expected... by that i mean finding out more about ourselves and who we really are or want to be and what we really want to bring to others. The thicker the mud, the more beautiful the Lotus blossoms :)
(0)
Report

I really love what sooozi says about kindness. thank you for your commitment to what your wisdom guides you to do.
I have two parents now with dementia and other health issues. My three sisters and I all work so we just hired a live in for them from an agency. Dad comes home from nursing home in a couple of days. He was only recently diagnosed with dementia but has failed faster than mom who has had it for awhile. It is touching how my mom has risen to what needs to be done...and all with that same inner wisdom and commitment to Love and kindness. she struggles but she amazes me. She did not like the idea of having another person in the house but realizes she can not care for Dad. We dont feel he will be with us long. Mom never accepted or maybe even thought of their mortality until now. She just said to me yesterday that she just wants Dad to pass away at his own home , not a nursing home. She wants him to have joy and Love around him. I have been going through so many issues besides this : house and car hit by huge tree. 2 days after Christmas. I will soon , finally, be getting a new roof and new siding. when it rains, i dont sleep due to noise on tarped roof. then, this week i had a tire blow out on my job (i am a courier for a bank) and the bank blames me ! i went a different way because i was 'guided' if u will to go that way. i am so glad because i went into the other lane and no traffic the way i went. bosses do not see it that way or believe me. so now my job is at stake. it is horrible when things hit us from all sides. BUT,,, kindness is what has helped me as well. It is all that has helped honestly. so lets all keep our hearts open and spread the kindess even to those we feel are harming us. Feed only the fire we wish to see grow :) melt the harshness with kindness. Love and blessings to all. I hug u all etherially :)
(1)
Report

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
(0)
Report

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.
(1)
Report

Thank you to you all!
(0)
Report

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.
(1)
Report

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.
(2)
Report

This discussion has been closed for comment. Start a New Discussion.
Related
Questions