How do we juggle our lives with taking care of our parents?

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Both my father and stepmom have Alzheimer’s and dementia. Stepmom also has aphasia. My stepsisters and I are trying to figure she care of them, have a POA and are taking over the management of their lives. They have a caregiver 5 days a week but still call us 10 times a day to help with emergencies that are not emergencies. We are struggling to live our lives, raise our kids, deal with my breast cancer diagnosis and my treatment plan, while juggling their lives. It’s too hard. We are frustrated and exhausted and losing our empathy. (My dad was never a great caregiver and had always been very narcissistic. Now it’s worse.) Your advice and support is very appreciated! 

Thanks, Marci B. 

Jo C.

Hello Marci and a very warm welcome to you.  I am sorry to hear of your diagnosis; you have much on your plate along with your step-siblings.

You and your siblings have been striving to keep the parents on an even keel in their own home with five day per week caregivers. It appears that is no longer sufficient and is par for the course when dementia exists. Things always continue to decline in dementia and especially our aged LOs are less and less able to deal with all that is unstable.  Home is no longer working for them.

All the calls are an indication that there is much insecurity and even fear; making contact is a way to try and deal with it for a bit of comfort even in the moment which of course needs more and more calls during the day.  It is in all probability time to make changes in the living conditions. A safe and secure place of care for both your father and your step-mother is the place I think you have come to.

It appears there is no longer a capability for either your father or step-mother to be capable to format their own plans of care and to indeed care for themselves and their needs.   In fact, this may have now entered a place of very high risk of danger for both of them.

I do not think, from your writing, that  an Assisted Living Facility, (ALF), would be a good placement for them unless it is a ALF that caters specifically to those with dementia. (There are many different kinds of dementia of which Alzheimer's is only one.)

It would be good to begin to look at secure facilities that could provide care for them. They would be safe, secure, have staff seven days a week on the 24 hour continuum; they would have licensed nurse assessments and oversight and meals; they would also have much more socialization and activities if they desire to take part or to simply watch.

The Alzheimer's Assn. has a 24 Hour Helpline 365 days a year.  The contact number is, (800) 272-3900.  There is no fee for this.  If you call, ask to be transferred to a Care Consultant.  Consultants are highly educated Social Workers who specialize in dementia; they have much information and can often assist us in our problem solving.

Midnight; it is also important to let you know that the Assn. also feels it is not good practice to list your full private email address.  We have many registered Members here, but there are also many scores of "Lurkers" who read but never join.  Some of these may well be those looking for an opportunity for criminal behavior.  Sites that are for people with illnesses or other conditions are ripe for those who are looking for targets; it is SO easy to impersonate someone else or to misrepresent themselves.  Electronic evil doers are out there.  I would hope you remove your email address on your Profile as well as your avatar. 

We are all here in support of one another and that now includes you too.  Let us know how you are and how things are going; we will be following along.

J.

Quilting brings calm

Midnight - 

I have a mom and step-dad.  She technically has been diagnosed with mild cognitive impairment ( otherwise known as stage 3), but actually seems to have mild dementia ( stage 4). He has been diagnosed with stage 4, but has different symptoms than her.

To begin with - all of you should stop answering the phone for multiple calls a day when the caregiver or a family member is with them.  Let it go to voicemail and check that at your convenience. The caregiver or family member will call you if you are needed.  Specifically for you- stop answering the phone on days you don’t feel up to it, or on treatment days.  You don’t need the stress. A different family member can handle it.

Consider moving them together into assisted living or a assisted living/ memory care facility.  I realize you need to consider finances, location, etc.   plus they will probably tell you they don’t want to move.  The exact facility level depends on what their particular cognitive situation is.  Since you are the daughter of the dad, with stepsisters to help with their mom, maybe even consider just moving him- so that you can concentrate on your treatment.  Or consider just moving her. Your dad may not be mentally capable of being your step-mom’s caregiver any more, besides not having a suitable personality for caregiving.  My parents are perfectly fine in a two bedroom unit in assisted living.  This relieves me from daily caregiving. I can then concentrate  on their  medical appointments, managing their finances, their errands,  contacting them almost daily by phone, etc.   This allows me to occasionally have a social life. 

Why are my parents in a two bedroom unit?  Because they have had a dysfunctional marriage for 58 years.  They were in a one bedroom until the covid assisted living restrictions meant they were in their apartment for way too much time and the director felt a two bedroom would  give them more space. 

Will assisted living always work for my parents? Probably not if they live long enough to progress to a stage where they wander or refuse to shower or change clothes or can’t handle changing their  own Depends  type underwear, etc.  They are in their 80s, with him having several serious physical conditions.   I’m hoping they don’t live long enough to progress  to those stages.  I had to do what was best for them 3 years ago, and assisted living was it.   

FYI- a second person in a unit is usually not the same price as the first one.  Because they usually only charge the second person an amount to cover things like additional meals, extra  utilities, extra laundry loads, etc.   The first person is paying most of the cost for the apartment itself.  

Suzzin

I have two parents with dementia, mom has Alzheimer's and dad has dementia complicated by brain damage from a fall and brain surgery. They insisted they were fine in their own home, absolutely refused to move, said "we know we will need to but it's not time YET". After hiring caregivers and dealing with the expense and the stress---coming from both sides---we finally moved them to assisted living. It's not perfect but it's so much better, I still spend a lot of time worrying about them but I know there's a team of trained caregivers to provide a scaffold for them.

I'm telling you this because it sounds like it's time for you to make the same move. If you wait until they need it, then it's too late. You won't have much choice in where to move them, they won't have time to settle in and make connections, and you will make decisions in a crisis. It's hard enough to care for one parent when the other one is helping. When both parents need help, they need to have better care. This isn't a matter of "if" this will happen, it's a matter of "when", and if you and the stepsisters are in relative agreement and have a POA then please, please start moving now. Your parents will likely never agree, will likely never thank you, but that's not because you were mean to them, it's because the disease means they can't think clearly.