What should we do?

[GnarleyC7]

If you have the time to read this please participate and leave some feedback, isn't this a community? I need feedback and thoughts!

I'm about to turn 62, my wife will be 63, no kids. We live in Sonoma County, both are not working. For the past 20 months, I've been the responsible one helping my aging parents. My father had a stroke and now it seems is finally in a decent care home. Before it got to this point both parents understood we may have to move in the future. Helping them at all hours has been hard on both me and my wife, it has cost us financially. My mom has mild cognitive decline, it will be dementia soon! My 2 sisters have done little to help and aggravate the situation. I am the first executor of their trust.

With many reasons to leave the area and having enough equity in our home to take it and eliminate a mortgage I am really considering moving to Oregon, maybe the coast! NO MORTGAGE! Finding work has been near impossible to meet our expenses and as our limited working capital diminishes we risk losing our home. We dislike our neighborhood and I don't want to live in a multi-level home or in this area! 

I'm ready to walk away and tell my sisters and mother adios! My sisters can care for her when the time comes as I have with my dad. I can deal with various needs remotely and travel as needed.

We both do not want to tap into SS until age 67 - 68 if possible and by eliminating the mortgage we'd drastically cut our expenses. We have some retirement savings and by taping that for $1k a month along with some contract work I do I believe we have a solid foundation with $30k a year to pay all of our expenses and still have a little cash. Wherever we are we'd hope to add to our income!

We need to consider our future, we can't stay in this house, we don't want to lose the equity and I see no reason to try restarting here and prolong the inevitable requirement to move. I see a very clear path forward and feel the need to do it very soon while we have the means to pay for it as next year is unknown and our working capital will be reduced each month paying this mortgage until it runs out!

What am I missing in this decision-making process?

Please be kind and respectful of our situation. I'd love to hear comments and if you've done something similar and why!

Thank you

[JudiS307441]

As an older adult and pastor I have learned that sometimes we can do everything somebody else wants and they still are not happy with us. I have seen many unfortunate family situations where someone is "guilted" into what they SHOULD do. The family is still not satisfied or happy. Then your life has lost its dreams, hopes and needs and nothing has been accomplished. Often times bitterness and resentment set in. We all need to learn as we get older that each of us have different needs in life and respect each others different needs and differences. Unfortunately sometimes the idea of family relations forgets that sense of identity. Please consider wisely what your life needs and goals are as well as your family. They need to respect that if you present things to them well. If not they will not respect you in the long run for doing what they what. I wish your journey to be well, @GnarleyC7. God bless you guys.

[kentuck2az]

@GnarleyC7, I feel for your situation, from the other side.

As the youngest of three sisters, I was the one that moved away when I was young. While my sisters still lived in the small town where we grew up, the care taking of our mother fell to them.

She was always difficult even before the dementia set in. In her case it was not Alzheimer’s but dementia brought on from hardened arteries.

I lived on the other side of the country and did not have the means to come back to take care of her. I know my sisters understood that but I felt guilty they did all of her care.

You mentioned your sisters do not help. Do they live near your parent? Also have you asked for their help? If not can you ask for help? Is it possible they just do not understand what is needed?

My suggestion would be to have a “family meeting” of some type. Not the finger pointing type, just a discussion regarding how much care giving takes, the expense as well as the stress it may cause. Tell them no arguments allowed, simply a discussion on how you need assistance.

Is a long term facility a possibility for the situation? Many times this is more positive for everyone involved.

I know how difficult it can be but I worked in a facility that did wonders for families. Is there anything in the trust for this situation?

I understand the time and cost of caring for an aging parent and know it puts a strain on family.

I guess I took the long way of saying, talk to your sisters about it without pointing fingers or flack from either side. It may be they do not understand what it takes. A long term care facility is not abandoning a loved one and if your sisters are unwilling to help that would be a great way to handle your situation.

Good Luck and I hope you find answers that help.

[GnarleyC7]

@kentuck2az 

One sister  7 years older is bipolar and unreliable, she has good days and bad days and no cell phone. Mom wants her to be her advocate on her advanced healthcare directive and does not see that having someone with a diagnosed mental illness could be a problem! I am relieved somewhat as this burden may not fall on my shoulders. The other sister 6 years older lives about 45 minutes away and works 30+ hours a week and has estranged herself after behaving badly when my mom said something negative to her causing the sister to act unrestrained and eventually resulting in a visit from APS and the police to investigate. Until we can actually get my mom evaluated she will be on her own. Once she is diagnosed with Dementia their stepped trust will kick in and allow for one of use to act on their behalf. She fiercely wants to maintain her independence, however, that will only last so long before she becomes a threat to herself. She will continue to be difficult and angry and I fear it's going to be really hard.

[agoyer]

@GnarleyC7  It sounds like you have thought a lot about this and done some good planning! It seems to make sense financially. No one else can tell you what is the best decision for you, but hopefully we can give you some things to think about. My concern is your mother and father (I'm a caregiving expert so of course I focus on that!) So here are a few things for you to consider:

• Your father - you say he is in a good care home now. Where is it located? During the pandemic it's all more complicated, but in "normal" times how often do you visit, check to make sure he's receiving the care he should be getting, make sure they're noticing changes in him, make sure his meds are right etc. etc.?  Will your sisters really take over that responsibility or will you wind up traveling back and forth fairly frequently? What will the costs of travel be? Can you drive from Oregon (with the pandemic air travel might be more iffy and more expensive). I totally understand your feeling that it's time for someone else to step up to the caregiving plate, but so often I hear from families that other family members (usually siblings) just don't do it when the time comes and then the parents suffer. And the siblings at a distance feel a lot of guilt and frustrations resulting in resentment and strife. So perhaps you'll want to have a very serious heart to heart about how you can all work together, with you at a distance, to ensure your dad's care is good quality and his quality of life is optimal. I recommend you get as specific as possible, even creating a schedule, and think through details of how you will handle the roles and tasks. Be realistic with yourself about what your sisters will/won't do...
• Your mother - essentially the same issues as your father. But with dementia it is even more complicated. Your mother will need support to help her remain as independent as possible for as long as possible, so as a family it is important to give her the support she needs but not move her into a situation where she goes downhill faster. Safety becomes an issues and it requires monitoring her regularly, helping with medications, doc appts etc. Socialization is key. And of course manage her finances (sounds like you may already be managing finances?). If it hasn't already happened, she'll need a good evaluation to determine what type of dementia she has and the best treatment for her symptoms as they change over time. I cared for my Dad who had Alzheimers (a type of dementia) and for 6 of the 12 yrs he had it he lived with me. I loved caring for him but I'll be honest it's intense and unpredictable as dementia goes forward. No two people with dementia are alike. It can be done at home, or she could live in a facility, but if in a facility her care needs to be monitored regularly (as with your dad). It takes a team! 

So - given these caregiving issues, what are your options?

• You could move them closer to you if it turns out your sisters aren't holding up to their tasks.
• You could travel frequently to visit and check in. (budget for that)
• You can use technology to help monitor them (in a facility or at home) like video cameras etc. You can set up home and community-based services to help and/or hire direct care workers to help her out. 
• Other options? 

Hope this gives you some things to think about! There's lots of good information available:

• The AARP Family Caregiving site.
• You might want to download or order a print copy of AARP's Prepare to Care publication - it will help with thinking ahead and planning for the future (both for yourselves and your parents!).
• AARP's Long Term Care calculator can be very helpful! 

Let me know if you have thoughts/questions - happy to help! Best wishes to you!

Take care,

Amy Goyer, AARP Family & Caregiving Expert

Author, Juggling Life, Work and Caregiving

[GnarleyC7]

Dear Amy, Thank you for your time and consideration.

I truly wish other AARP members would participate, we all can share and learn from each other!

I've been actively involved with my father's needs as DPOA and his decision-maker for advanced healthcare decisions, not my mom, who cannot accept this and wants to make his decisions. He had been at home until my mom became a threat to his wellbeing and was unable to care for him properly and eventually she was wishing he'd just pass or she wouldn't wake up. I took this as the sign to move him out. We really weren't sure what care he'd need and RCF #1 had a staff of one and was a sleep staff home. They didn't handle him well and he required more care than they could provide and was evicted after 4 weeks. After a week in the hospital to get him on better meds we placed him in another RCF #2 with 4 staff during the day for 16 residents and one awake staff at night. It turns out he's sundowning and the awake staff is able to get him back to bed.

This place #2 seems to be working after 2 weeks and are working with a transition nurse to stabilize him and get changes to the meds as needed. RCF #2 already had 8 dementia patients and understands his needs. I speak to the administrator every 3-4 days and things are good.  I have tried to work with siblings and unfortunately one is near 70 and bipolar and unreliable. The other is 45 minutes away and will not honor my requests even though I'm the DPOA and make decisions.

Since my father left, my mom who is now alone has recovered from her stress and caregiving and desperately wanted him to come home due to loneliness and argued with me as she feels she's recovered and can be his primary caregiver again. Unfortunately, she forgets most of the problems of the last 20 months! I have been at their beck and call and responding to emergency needs to help at 2 or 4 AM when needed a few times. Because of all this, I've put myself second and I am not working and found it difficult to look for work while engaged in their care sometimes hours each day. My father I feel is in a good place and I don't have constant questions from RCF #2 as I did with #1!

My mom will be difficult and has forgotten things that are relevant to where we are today. I Have been keeping her DR's abreast and even though she's functional she's 100% dependant on others. Dementia is cruel. This has made her even more bitter and angry as it progresses and she doesn't trust anyone and has no POA or someone to make her wishes known in the event of a healthcare emergency. The HMO Dr and Geriatric team have tried to get her to complete forms but to no avail! It seems like the only way to protect her at this point is to get her re-assessed which is near impossible or get a conservator appointed. I cannot stay in my home without income and restarting my career due to their needs where I live is not my best choice. Before both declined we had several discussions about my needs to eventually move and both understood. Moving in with my mom is not an option and my sisters won't either. I can't afford t stay where I live and I will need to move out of the area in the near future.

where I hope to land and find a home is about a 10-hour drive and I could be back if required. With technology, I can make decisions and it really doesn't matter where I'm at. At this point, I have to consider my future and if I don't do something soon I'll lose my home and won't be helpful to anyone.

Kindly,

GnarleyC7

[agoyer]

@GnarleyC7  You've been through a lot and it is extremely difficult to constantly balance your own needs with those of your parents. It sounds like you've made up your mind to move, so the key issue is about your mother's care since you sound satisfied with the residential care facility where your father is living. Does he have dementia in addition to his stroke? You mentioned sundowning so I wondered.... 

At some point someone will need to have power of attorney or conservatorship/guardianship as her dementia progresses. It's great that the doctors are urging her to get advance directives in place, but unfortunately if she won't do it then there will be problems. Many times health care providers will allow you to make final decisions if you are next of kin (but a PoA or conservatorship is definitely easier and better), but the financial institutions just won't do that. 

Do your parents have visitors? Any socialization? It doesn't sound like you or your sisters are visiting much. You could sign your mother up for an AARP Friendly Voices phone call  - it's a new program, it's free and it's offers socialization while people are stuck at home etc. A volunteer will call and chat on a regular basis. 

If your mom eventually goes in a facility or RCF you might want to consider one near where you'll be living. I'll be honest with you, it is much easier to manage all of the care when they are closer. But it can be done from a distance. It's crucial that you have someone who is your eyes and ears on the ground though - whether it be other family members, friends, neighbors, professional geriatric care manager (also known as an aging life care expert) etc. In this blog post I share some tips for long-distance caregivers.

We also have a caregiving forum here in the AARP Online Community where you can get more input from other caregivers and also a caregiving Facebook Group! 

Take care,

Amy Goyer, AARP Family & Caregiving Expert

Author, Juggling Life, Work and Caregiving