Follow
Share

We discovered mum had dementia after moving her and dad in with us. Prior to the move, she told us results form NueroPsych testing showed Mild TBI and no Alzheimers! Come to find out she never read the report or a doctor didn't explain it to her properly. She was diagnosed with Major Cognitive Impairment in February 2017, and recommended psychological treatment, medication, and an NP re-evaluation in Feb 2018. She did none of these things. The report indicated that she was not able to take care of her ADLs and needed 8 hours of in-home care 7 days a week. Needless to say, my wife and I were shocked and confused about what to do. We share a new PCP and she ordered a follow-up NP assessment to take place next month.


Dad is either experiencing cognitive decline himself or using denial as a tool for self-preservation. He just thinks mum is sensitive and gets upset with us when she complains that we are "bullying" her. Mum's behavior is unpredictable going from sweet to nasty, energetic to "sick" from some new ailment, and spending hundreds of dollars of limited resources on the internet to self-medicate. We are afraid to talk to dad about what we know because we don't want to upset him either!


My wife has brothers that live out of the country that are not currently involved in their care but two of them hold power of attorney. As far as we know, they are as much in the dark about mum's condition as we were. Where do we stand legally? Are we allowed to tell them what we know?


Where can we go for support? The stress and tension we are suffering is not healthy!

Find Care & Housing
I found that having the caregivers dealing with parents in their home with dementia was a very tough row to hoe, and it keeps getting worse.

but..now you say the you do not have POA? That is going to be impossible with time. How good is your relationship? They are going to have to make decision based on your judgement calls.....is that going to work?

i would definitely start by making sure they are very well informed. No sugar coating this...if you down play it..it is going to come back to bite you.

send them copies of the full report. You are going to need partners not adversaries.
Helpful Answer (5)
Reply to Katiekate
Report

We are planning to do that this weekend. Mums re-eval is set for Oct 10. I have offered to go with them but they said no. I can remind them to include us in the HIPPA statement, then follow up with the Dr ourselves if we need to. One POA brother is planning a visit in November, but I want him to be fully informed before he arrives.

We talked to mum about giving the POA to us, but she claims the brother is the "head of the family" and needs to ask him is it's ok. This all so new and very confusing for us. We expected 5 good years before even thinking about this. Boy were we wrong!
Helpful Answer (0)
Reply to Chittman
Report
DofNPDmother Sep 21, 2019
When you stated that you offered to go to the doctor's visit with "them," I assume you mean with Mom and Dad? And they said, "No." This is a red flag to me. If they are living with you, you should be attending every doctor's appointment. I hope you can drive them to the appointment and make sure the HIPPA is signed to allow you access. I would make that a stipulation of their living with you. Hopefully your brothers will also encourage them to give you POA. If the brothers do not want to do this, I would tell them that they must take the parents into their own home.
(6)
Report
See 1 more reply
You r not the only member of this forum that moved parent/parents into their home only to find that they needed more care than they were led to believe. Sometimes, its one parent covering for the other and when that parent passes, then family finds out how bad the surviving parent is. I guess the best scenario would be, staying with the parent/parents to see where they are cognitive wise or ADL wise before moving them in.

I would tell the POAs now what you have found out. That Mom is being evaluated. I suggest you be there. I would not trust either of them to get the info straight. I also suggest you list everything you have seen so the person testing knows what type of questions to ask.

When Mom goes for the follow up, maybe you should make the appt when the POA is there. He can then go in when the report is explained to Mom. Dad needs to be present to and made sure he understands what the Dr. Is saying.

I would not care for anyone that I did not have financial and Medical POA for. Its ridiculous that ur parents thought their sons could carry out their wishes from another country. But I guess thats the culture they come from. Mom may not be able to cognitively assign another POA. Dad maybe able to, and should. Are your parents on Greencards? Are their passports from their country of origin? Maybe better for them to be close to a POA. As Caregivers you are going to need money for their care and the ability to speak to Doctors. If Mom is found incompetent, maybe the POA, as her representative, can sign HIPPA paperwork so u can talk to her Doctors.

Like I said, I would not to care taking unless I had full control. I don't like depending on someone else to do what needs to be done so I can do the caring. There are posts where a child is doing the caregiving and the POA refuses to give them money to properly care for the parent.
Helpful Answer (7)
Reply to JoAnn29
Report
Chittman Oct 16, 2019
Exactly! Mom has already been diagnosed. However, she cancelled re-evaluate appointment and refuses to make another. POA brother coming next month. We’ve already gave him the report. I’m planning on having the oval long term care evaluator come to assess her when he is here. Whatever the outcome, I won’t lose my life over this.
(1)
Report
Chitman - the stress and tension you are experiencing now are just the tip of the iceberg. I am not exaggerating. I am forewarning you.

Please take at least a few hours or better yet a few days to look at many posts in this forum as you can, and see what problems other posters are facing when they take care of their moms, dads, spouses, grandparents, etc. who have dementia or other health issues. What you see is your future with your in-laws. Another warning: you marriage might not withstand the stress.

Here are a few sample questions from the forum:

My only sibling refuses to help 90+ yo parents. What to do?

Please give us ideas to lock front door so that mom doesn't walk out.

My mom has been increasingly hallucinating that there are people, or a person, hiding in our backyard or near our yard's wall! What can I do?

Husband has been having incontinence issues at night and sometimes soaks through the depends. We are planning to travel. Any ideas?

What do you do when mother will not go stay anywhere- even with family, to give caregiver of 6 yrs some time needed away?

So, Chitman, what do you do when you're really sick and over the counter drugs don't help? You go to the doctors and get the professionals to help you.

Then, what do you do if you can't handle one demented parent, and possibly two in the near future in your home? You go to the doctors and get the professionals to help you.

One thing for certain, if they want to stay in your home and have you look after them, then they HAVE TO be open and honest. Seems like they are trying to hide things and bamboozle you and your wife. If they don't want to share their medical conditions, then they should be on their own managing their affairs and not burdening you.
Helpful Answer (6)
Reply to polarbear
Report
Chittman Oct 16, 2019
My point exactly!
(0)
Report
So is this couple your wife's parents, rather than yours?

#1 Don't panic.
#2 Find out where you are.
#3 Revise the plan.

The thing is, what strikes me immediately: the parents moved in with you and your wife, and you had no idea that mother was so unwell mentally.

So... why did you and your wife move them in with you? Why did you think they needed your support?

.
Helpful Answer (3)
Reply to Countrymouse
Report
Chittman Oct 16, 2019
They lived in another state and couldn’t take care of their home anymore. They asked for our help and we decided we had the room, so what the heck. They are mid eighties and in pretty good overall health. We figured they could enjoy life with less stress here . The dementia diagnosis came as a shock.

We thought we would have a few years before even thinking about them needing care provided to them. We are not and will not be in a position to proving them personal care ourselves. We both work full time with successful careers. We will not become “caregivers”.
(1)
Report
If they continue with refusing your help, you and the POA should decide to seek court appointed guardianship. The one who lives in the state may be best. In that case, you can have more rights to take her for the appropriate doctors. I also suggest that you do not tell mom when you are going to the next doctor appointment until you get there...some therapeutic fib.

It does sound like you need to get them out of the house. Do you think they could go to an independent living facility while dad can still cover up? I have seen couples in them with one spouse having memory issues who did well until one of them became less mobile. There is less pressure on the couple when there is food provided, some limited laundry and limited transportation. You would probably still have to take them for appointments but scheduled on your own time off
Helpful Answer (1)
Reply to MACinCT
Report
Chittman Oct 16, 2019
POA brothers live out of the country. We are not their caregivers. They will continue to make their own medical decisions until someone comes from out of the country to take that responsibility over for them. I agree that they will need to move if they continue to refuse prescribed medical care.

if they refuse to transfer POA to my wife, then they will have to move in with or close to their POA.
(0)
Report
Chittman - let us know what's decided after the POA son comes next month.
Helpful Answer (0)
Reply to polarbear
Report

Ask a Question

Subscribe to
Our Newsletter