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Always second guessing
Nins Sherry
Posted: Monday, July 8, 2019 3:27 PM
Joined: 6/22/2019
Posts: 1

Hello,  My mom was diagnosed with Dementia in 2015. about a year and a half ago she started having issues with her kidneys.  Between me an my dad, we have been caring for her.  My parents are limited income so my husband and I were paying a care giver program to come in 4 days a week for 2 hours to help my mom with her bath etc.

In March of this year, she ended up in the hospital with her potassium at 7 and her kidney function at 13/14. We brought her home on Hospice.  about 60 days later she had new blood work and her kidneys rallied back up to 23 so she was bounced off Hospice. About two weeks later she was back in the hospital with high potassium again.,  This time she was referred for in home Palliative care. Within a week, the same doctor who bounced her off Hospice, also said she wasn’t eligible for the palliative care. Prior to that , one of the other palliative doctors has assessed her and said her Kidney disease was Stage 4, out of 5 and her Dementia was stage 6.5 our of 7.

Through all of this, her dementia has gotten so much worse, she is fully incontinent.  She is often prone to diarrhea. My dad will help clean her up etc, but she is really resistive and combative to his aid.  I work full time but have had to leave work to help clean her up etc.  I would check up on her after work and often times find her sitting in her own mess. My dad tried to feed her and she refuses to eat. We ended up paying for an AM caregiver 2 hours in the AM, 7 days a week to get her bathed and cleaned up for the day.  We hired a second caregiver for 2 hours in the evening to again, make sure she is cleaned up for the night.

We met with her regular physician and her nephrologist after she was kicked off palliative care and all agreed that with her dementia, she was just not a good candidate for dialysis and if we weren’t going to do dialysis, constantly poking her to do labs to monitor her kidney and potassium levels was just too much for her,.  Her nephrologist said, let her be,  Let her eat what she wants, drink what she wants, make sure she doesn’t get dehydrated.  We have been giving her half an ativan in the morning to help with the agitations, liquid tylenol to handle pain, and imodium to handle the diarrhea.  But she has still been hard to keep clean even in between the two care givers.

Well anyway, the past week, she has  been sleeping a lot, dealing with a lot of diarrhea , hardly eating, sleeping all day,  I would get her to at least eat pudding and drink water, but my dad was still having issues getting her to eat and getting her cleaned up. He has just been so overwhelmed.

yesterday her AM caregiver called and said she was in a lot of pain, not wanting to het her give her a bath, she has not eaten much in almost two days.  She recommended we call 911 and take her to the emergency room.  We did.  While we were there, she did lab works and found out her kidney function was down to 11 and her potattisum was again high, about 6. We again told the hospital we would not be doing dialysis.  This time around, I had to make some hard decisions. She was again eligible for Hospice, but I asked for assistance in getting her into a board and care facility.  My dad wants her home and he insists he can take care of her, but she needs to much care right now. She is almost pretty much bed bound.  When we do manage to get her up and to the bath room, everyone is exhausted and she sleeps for at least an hour after the ordeal. I spoke to her caregiver and  even she recommended an in patient hospice program.  As my dad is so overwhelmed. 

My husband had to borrow off his retirement to pay for the board and care.  Medicare will pay for all the hospice/medical expenses but we have to pay for the board and care.  We found a really nice place that is a private home. It has only been a day but I am very happy with the staff.  Hospice will send a care nurse to do baths, the LVN will visit two times a week, the facility can call anytime she complains of pain and they can administer morphine if needed. 

My problem is I keep second guessing my decision.  Now that she is back on Hospice, could my dad have taken care of her at home with the caregivers we had hired? Then she could be at home,  I just keep feeling like I acted too soon.  I told my dad, I retire in October and then we can look at options of bringing her home because then I can be there during the day.  Actually we could even consider bringing her to my home. I know she is being   carded for but I just feel sad   leaving her after I visit.

Posted: Monday, July 8, 2019 3:48 PM
Joined: 6/21/2019
Posts: 685

Nins Sherry,

My DW is crossing into Stage 7 and has the mentality of a VERY young girl. This past year, she has gotten more and more uncomfortable with me seeing her naked, and she goes ballistic when I have to clean her around the genitals.

When she went into Hospice care in May, I made it clear I need female nurse's aides to attend to my DW's toiletry and hygiene issues. My DW still isn't happy, but it keeps my DW from seeing me as an enemy.

I think your dad has the same problem when he tries to clean up his wife after a bout of incontinence. She doesn't think like an adult anymore. She's a little girl and your dad is a strange man "touching" her.

If your mom is at Hospice out of the home, ensure only females touch her for hygiene and toiletry. If she comes home again, maybe you can handle that and dad can take up another responsibility?





Daughter in Florida
Posted: Tuesday, July 9, 2019 10:49 PM
Joined: 4/15/2018
Posts: 74

Your post reminds me of the sacrifices whole families make while caring for their LO with dementia. In your case, the added kidney problems make it even more difficult. Your husband dipping into his retirement to help pay for her care is another example of how this disease affects everyone involved. My husband was a saint during my mom's care. He handled all the finiancials, met with bookkeepers, wrote numerous checks out of our account, and on and on. I thank God for his support during the last seven years. I know you must be grateful for your husband's support as well.

Please do NOT second guess your decision to place her under someone else's care. What I learned during my mom's last year and a half (which she spent outside her home) was that I could not do it all. Likewise, you are not Wonder Woman, and your dad is not Superman. We are human beings with physical and emotional limitations. We also have our own lives separate from care giving, usually a job or other family members who need our attention. Not to mention, hobbies and interests that we place on indefinite hold for our LO. 

Once you place a LO in the hands of capable caregivers, whether an ALF, MC unit or a Nursing home, you revert back to your previous role, which in your case is daughter. Your dad becomes the husband again, and both of you will continue to care for your mom, but in a different way. The burden and stress of 24/7 caregiving is replaced with an emotional release and a renewed energy and your role as daughter and husband is restored to it's rightful place. You will continue to be her health care advocate, but you won't have the burden of the physical aspect to deal with day in and day out. That gives you both rest that you need. You have dedicated yourselves to caring for your mom, but burnout is real. Underlying resentment is real. And family stress is real. Don't beat yourself up for this decision. As someone told me once..."you make the best decisions you can, with the information you have at the time". All of us just do our best to get through this period of time. God bless you.

Posted: Wednesday, July 10, 2019 5:16 PM
Joined: 7/12/2017
Posts: 1546

You have made the right decisions, you need to think of your father's health as well, he matters too.  We tend to just think of the PWD and not the spouse who needs to know its okay to let others help.  It why they are there, and its no shame.

As for mom moving in with you, read some posts here before you decide to be 24/7 caregiver for the next few years as your retirement just started.  And if she is with you , does that mean dad is all alone?  If he is alone, mom should be cared for in hospice

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