Siblings and Mom's AD

Caring62

Mom has been living relatively ok in AL for 4 years with managed meds and other support.  With mid-stage AL Mom has with noticeable changes in memory and behavior over the duration.  The number of behavior "incidents" (yelling at staff, swearing, etc.) with staff have increased over the last several months.  Her doctor has been adjusting her meds but Mom's agitation continues to be more consistent.  

My siblings and I, as her primary care coordinator, visit Mom via phone/in person regularly.  Mom doesn't remember most of our visits, including mine that occur at least a couple times/week.  Mom is not social and will not take part in AL social activities.  This is consistent with how she lived with Dad before he died in 2017; they kept any social involvement to family.   

Has anyone had to work through issues relating to sibling expectations that I, who am retired, should have Mom live with me and my husband?  Why do siblings who are still working seem to believe that a retired sibling should take this on?   This is a non-starter for multiple reasons and am thinking that an adult family home might be a fit.  

Any feedback would be helpful.

loveskitties

Hi,

Has the AL staff been able to identify any triggers which cause her bad behavior?  Have they made any recommendations?  Does she only have these incidents with staff or does she also have them when family visits?  

Is her diagnosis of mid-stage Alz. a recent one or the one given 4 years ago when she went to Assisted Living.

I am not certain that I know the make-up of "an adult family home".  Are you considering that because they don't try to get patients to participate or be social?  Are you considering it in the belief that it will change her behavior?

Unfortunately, most people who have not dealt directly with an Alz. patient do not understand the level of care it takes for in-home care.  Even if you can afford 24/7 care, it is hard to keep caregivers these days.  You are constantly on the hunt for acceptables for your situation.  Many such people feel that no one can care for their LO like family can.  

I am sure others will offer their experiences with both situations.

terei

There is no valid reason that they should expect you to take this on.  They probably think you would have more time than they to devote to your mother(whether you want to or not).  I do not believe that people should be caregivers unless they truly want to be + they have the temperament + support that is needed to do so.  

Dont let them try to lay a guilt trip on you.  You have a right to a peaceful + stress free life, which would be impossible with a PWD with your family 24/7.  She is safe + cared for + does not lack for attention.   Ignore their ‘expectations’.  They have little idea what is in store as your mother becomes less + less aware + more compromised.

The first thing that should change(IMO) is that your mother should be escorted to every activity that takes place at her facility.  After she is there, she should be allowed to leave if she wants to, but IME the PWD will get caught up in the activity + at the least, will occupy her time.  

An ‘adult family home’ will probably not be sufficient to handle your mother as she progresses toward needed more + more attention + care.  MC is probably in her near term future.

Caring62

Thanks for the questions.  Mom has been in mid-stage for at least 4 years.  We aren't quite sure about the triggers.  Many times forgets she has had a meal and then walks to the AL kitchen or front desk to complain and "chew out" the staff for starving her.  Mom is usually a polite person but when she is agitated can get pretty verbally abusive with anyone, staff or family.  I've been thinking about an adult family home as a way she can be near people but still have her independent TV, etc.  in her room.   Memory care I have visited seems to work to get people "out of their rooms"  to be with others with my siblings and I feel could trigger more aggression from Mom.  

Any thoughts?   

harshedbuzz

Caring62 wrote:

Mom has been living relatively ok in AL for 4 years with managed meds and other support.  With mid-stage AL Mom has with noticeable changes in memory and behavior over the duration.  The number of behavior "incidents" (yelling at staff, swearing, etc.) with staff have increased over the last several months.  Her doctor has been adjusting her meds but Mom's agitation continues to be more consistent. 

She's outlived the appropriateness of AL. It is time for a higher level of care. Medication should still be sought to calm her agitation.  

My siblings and I, as her primary care coordinator, visit Mom via phone/in person regularly.  Mom doesn't remember most of our visits, including mine that occur at least a couple times/week.  Mom is not social and will not take part in AL social activities.  This is consistent with how she lived with Dad before he died in 2017; they kept any social involvement to family. 

Perhaps your mom isn't a "joiner" by nature, but the bigger issue here is that activities in an AL are geared towards a population that is cognitively intact. Likewise, the other residents have noticed your mom's cognitive shift and outbursts and would shun her for this which is likely playing into her isolation. Seriously, my aunt with dementia was treated as a pariah by the old "mean girls" at her AL- it was like middle school all over again.
  

Has anyone had to work through issues relating to sibling expectations that I, who am retired, should have Mom live with me and my husband?  Why do siblings who are still working seem to believe that a retired sibling should take this on?

People have all manner of ideas that need to be checked. That the sister should care for mom, not the brother. Or that the youngest should. Or that the oldest should manage money while the girl oversees medical. There is much dysfunction out there.

Perhaps her hope that you'd take mom on is about her peace of mind that mom is with someone she trusts; maybe she has that same "keep it in the family mindset your parents had". Or maybe she sincerely believes she would take mom in if she could- if so, you could call her bluff. Perhaps a some of the money mom is now paying towards AL could go to your sister for care. (do run this buy a CELA first, it's not doable in some places and could have repercussions down the line)

   This is a non-starter for multiple reasons and am thinking that an adult family home might be a fit. 

I would just tell your sister, this is not possible. Don't offer her reasons or excuses. Just say no. 

These care homes aren't really popular where I live and I've only had dealings with one years ago for my grandmother. It was pretty scuzzy and my cousin soon had her out of there. The staff was barely trained for the physical aspects of care giving and I'm sure none of this lot was up to the task of thoughtful dementia care. I personally worry about oversight in these kinds of places for the same reason I would feel more secure placing a child in a large day care facility over some random running one out of their basement. Just an opinion.

I would encourage you to tour MCFs. The training and physical layout of the space will be designed for you mom to age safely in place. Most offer private suites which would give your mom a safe place to hang out. Yes, they will try to engage her in activities. A quality MCF will have a daily program of things to do that serve a range of interests and are designed to allow participants to feel successful. Your mom may be more open to activities that are dementia-informed; some PWD seem to regress to a personality they had as a younger person and maybe teenaged-mom would be more social if she was supported in it. Dad wasn't a joiner but he did like their music programming especially when live performers came. Other people enjoyed the weekly religious services and bible study groups. There were ladies who got together and did crafts and groups who baked daily. 

Any feedback would be helpful.

Cynbar

By "adult family home", I assume you are talking about a small, private house that has a couple or very few residents. It often would have a live-in caregiver or two, sometimes it is a family home that takes in residents to make money. Usually additional caregivers come in for shifts during the day. If that is what you are thinking about, be very careful. First of all, there is generally no oversight or licensing of such places, or at least very little. The quality of the care varies widely. And, if your mother has difficult behaviors, this is a real challenge for a small staff to manage effectively. As many caregivers here will confirm, it takes extraordinary patience and commitment to manage a dementia patient 24/7, instead of the 8 hour shifts in a facility. Private care homes are an option for easy patients, not challenging ones. I know of a couple here in my community, and I would not recommend them. 

Stand your ground with your siblings who think you should take your mom to live with you --- it's easy for them to say when they're not taking it on. I agree with others that it sounds like she needs more than AL can provide. I also suggest you start looking at MC facilities, and find one that will not insist she attend multiple activities. I know some here feel that PWD should be taken to all activities, but I know I would hate that if it were me. Honestly, I think sometimes it s for the convenience of staff. Choose one that puts the needs and wants of the patient first.

NylaBlue

If your siblings feel so strongly that their mother should live with a family member, offer to help move her into one of their homes! 

Seriously, I implore you to just say NO. No explanation, no justification, just “NO, I can’t do that”. Because, you can’t. Most of us who are doing this CAN’T DO IT, but for any number of reasons we are stuck. Don’t become a 24 x 7 caregiver, ruin your health, ruin your finances, ruin your marriage, destroy what remains of your life, simply to satisfy your clueless, selfish siblings. 

Lindsay22

My mom's MC does not force or overly coerce folks into activities.  Many of the residents don't participate.  They do eat communally in a group dining room but I think that is beneficial for helping with anxiety around food (which is common with dementia).  Your mom will need more care, not less.  Many assisted livings will no longer keep later stages AL residents.  I doubt that a home based adult living situation would either, especially as wandering and night time disturbances become more likely.  I would look for an MC now, the lists are long and staffing shortages abound.  The right MC will work with your mom, they've seen it all.

sandwichone123

The  people that are not responsible for the care of the PWD very typically think other family members should take on more responsibility. The fact that they have these beliefs has no more relevance than anything. Do not bring your loved one home. Seek appropriate care, but bringing her to stay with you, even "just for a week, while we work out the details" will take over your life. Set limits with your family ("you cannot tell me how to care for mom. If you think I'm not doing it well, you're welcome to take over" kinds of limits.) If they continue to guilt you, limit your contact with them. You have only one life to live.

Caring62

Thank you all helping sort through the multiple issues.

Dorty

Hello Caring62! I also agree with the others when they encourage you to “ just say no!” to moving your mother into your home. It is unfair of your siblings to even suggest this. Stay strong and stand your ground! 

My LO is in AL. When we moved her there, we told the staff that we wanted her to go to every activity. After all, socialization was one of the main reasons it was time for her to move to AL. Given the choice, my LO would probably decline going to her activities but the staff knocks on her door and tells her it’s time, and she goes. She ends up enjoying herself (even though she doesn’t remember being there a few hours later). She’s living in the moment.

elisny

I suggest doing what you are comfortable with, or feel compelled to do - for your mother.  Regardless of what your siblings think or do, you have to live with your decision.  

My "story."  I have 2 bio siblings who do pretty much nothing for my mother.  I have one who visits weekly, has arranged bday gatherings, and provides legal support (which is not insignificant). I am grateful for his support and participation.  My step-sibs are effectively 100% removed.  

I could not live with myself if I left her 100% in the hands of a warehouse-for-the-elderly where she has resided for 7.5 years.  She is financially trapped in a continuing care retirement community where she has a Life Care contract (effectively a LTC contract for her life, but at one facility - theirs).  My mom is immobile, legally blind, and unable to initiate communication, though thankfully she hears fine and understands.  Besides dealing with all the administrative care, monitoring the nursing home care (trust me, they need monitoring), and advocating for my mom, I provide virtually all of her emotional and psychosocial care. I also assist her with meals at least 9 meals each week. I am the only one who takes her outside.  I am the one who set up devices to give her music and a variety of suitable programming for a blind person.  I do all her programming,with her input; the facility staff help me to some degree when I am not on the premises.  (Aside: This is a self-proclaimed "high end" nursing home with no music in residents' rooms -- insane. Thank Penny Pritzker.) This has gone on for 4.5 years, since my step-father passed on. 

I am not looking for accolades or pats on the back.  My decision is driven by empathy, love and doing the right thing.  I don't understand my "removed" brothers.  Maybe they have swallowed the B.S. the facility spews out.  Maybe they lack empathy.  Maybe the situation is too painful. Maybe our mother just can't be a priority in their lives.  Maybe they hold resentments towards her.  Maybe they are too immature.  It doesn't matter to me.  I don't need to understand their choices to make mine.  

Best to you.

Rebellia

Last summer my 85 yr old mother called me out of the blue in a rage- accusing me of stealing her mothers jewlery - her family inheritances- of the time during my grandmothers passing some 30 years ago. I was shocked to say the least. It had actually been proven back then that my grandmas caregiver had stolen several personal items during that period of time before she passed. Ive never taken anything from any family members- and have been a born again Christian for 20 years. ( of which she mocked me for when I reminded her of this). However- as a teenager I had run into addiction issues which led to shoplifting. Im wondering if this behavior could possibly be a sign of onset of althiemers? At the time of that phone call I reacted in a hurt & defensive way. Im living in a different State that she & my brother are in- & dont see her often. As a matter of fact- it had been 4 years since weve spoken even. Due to her " disowning" me as her daughter 4 1/2 yrs prior. We had just begun to re-establish our relationship 6 mo before this bizarre call. My question is this ; since my brother is close to her ( & may not be aware of this strange accusatory paranoid behavior) should I attempt to contact him? In efforts to share the info with him so he has an awareness of her possible condition?. Or do I chock this up to her deep seeded hatered of me that shes always had- yet somewhat covered up these past 30 years. My kids gave missed their grandmother. Im confused. But recently have looked into dementia & its occured to me that this may be the reason for her recent behavior towards me- as if I were still that defiant 16 yr old juvenille deliquent. 

TThanks - any help is appreciated. 

abc123

Hi Rebellia, welcome to the forum. I'm glad you found us. If you start a new thread you will get more replies and some good suggestions. I'm sorry this is happening to you and your mom. It does sound like she might have some type of dementia.

I suggest reading, Understanding the Dementia Experience, by Jennifer Ghent-Fuller. You can read it online free. I just read it myself for the first time. I don't know why I waited so long. 

I wish you well.

harshedbuzz

Reballia-

You will get more replies if you were to start your own thread by clicking the tab at the top of the page. I am sorry you were on the receiving end of that tirade; it must've been painful to have all of that dredged up. 

The behavior you are describing sounds very like confabulation/a conflated memory. It's a common feature in dementia. What happens is that a PWD recalls a event or incident, but can't recall the details around it. Often- like this accusation- it is centered on an emotionally charged time as the loss of one's mom's jewelry would be or having a child with addiction issues or a history of shoplifting would be. What happens is that the PWD backfills the gaps in the  memory in a way that seems logical to them. 

This was a particularly routine thing with my dad. He had mixed dementia and one of those includes confabulated memories as a diagnostic feature. My dad and I never got along very well; my late sister was his mini-me favorite. While he would confabulate about all manner of benign incidents, I was most often the target of the uglier stuff. My sister had a lot of mental health issues and went through life making terrible decisions. In the midstages, before he was diagnosed, he would accuse me of all manner of dastardly things my sister had done- throw a beer can at a cop at 16? Leave her preschool aged kids in a bar when she got drunk? Cheat on her worthless husband? (Some times he did this in front of my then teenaged son which got interesting very quickly) Before I understood this, it felt very like he was rewriting history or trying to level the field to make my sister seem less awful in her behavior.

Later, he accused me of selling his home for $350K less than it was worth. It came up often and was always $350K. I didn't, but it intrigued me. A few months later, I was helping my mom get a handle on their finances (she did the monthly stuff/he did the investments) I discovered he'd lost $350K day-trading in the last recession. It was as if he could own up to it and needed to blame someone else. 

Not all of the stories were awful. He once told a tale of getting a babysitter for the kids and taking a ride along the coast in Cape May with my mom in his Miata. This was a mash-up of 3 roadsters. The babysitters and coastal drive was on Cape Ann in a TR3 in 1961 (this is the event he was trying to describe according to mom). By the time they got to Cape May, the kids were in high school and the car was an MGB. The Miata was mom's car; he gave it to her for their 50th and it only ever lived in Florida until he was diagnosed. Some of the tales made for real WTF? moments. He claimed to have had knee replacement surgery (mom) while pointing to a spot on his elbow and that he lost his house in a flood (me). 

I would guess your brother is aware of this behavior. He's probably getting accused of all manner of things he didn't do either. But you could reach out to discuss it>

HB