Long distance/only child caregiver of mom with AD…also caregiving for teen with mental health issues

mainegirl222

Hello everyone. I’ve been lurking since Tuesday when my 95 yr old mom was diagnosed with late onset early AD. I’m an only child who lives across the country from my mom with my DH and our teen daughter (Senior in HS). Our daughter has mental health needs (severe anxiety, self-harming, suicidal ideation). 

My mom is in the early stages of AD and wants to stay in her own home alone as long as possible. She has a 99 yr old boyfriend who comes over daily from a nearby town.. She is not wanting people to come in to help her, and her boyfriend is insisting she is doing well and “backslid” when I was with her for the past month (both at her house in ME and at my house in WA). He doesn’t see the missed pills, the dropped pills, the pill put into the wrong prescription bottle with other pills, the not recognizing a long time family friend, the missed bill payments and confusion over finances (which I am now taking over), the inability to make simple decisions (answering “I don’t know”), the poor decision that she should be taking a walk around the block alone early in the morning or after her friend leaves in the evening. Mom hasn’t accepted wearing a medic alert button and she is balking at me having a friend come in weekly to organize her pill box or to help her do laundry which is downstairs in the basement if her house. 

I want to move her to WA to an ALF or maybe a CCC (because staying in our home with us and our daughter would be difficult for all of us and stressful for my mom if teen is self-harming or screaming)  but this will mean leaving her boyfriend and the home she built with my late dad in the 1950s. On one hand, I understand this and wish to honor her decision. OTOH, with my suicidal/self-harming teen who is going into her senior year I feel that I have two people whom I love with my whole heart who need me very badly. I feel like a wishbone. I have a part-time job, too, that I love and need to keep to help my pension accrue and to pay for all the things these two people are going to need. If I’m with one, I’m neglecting the other. I have no family nearby to help with Mom in Maine as she is the last of her own family and my dads siblings are all gone now too. I have a handful of dear girlfriends who can help a bit but she is not their family. Things would be so much more manageable if she were out here in WA, nearby. 

At what point should I just make her move here? It sounds so mean but would decrease my stress level greatly and allow me to focus on both her and my teen. Then  the money I save from not flying across the country every 4-6 weeks to visit Mom could go into her care instead. I would still call her every day as I’ve done for years. I would visit her 3+ days per week at minimum. And I would be here to help DH to manage our daughter’s mental health issues. I feel selfish but I want her out here nearby. 

Anyone been in a similar situation? Any tips or thoughts? I just returned to WA after that month with Mom and I feel so overwhelmed with what I need to do. And I’m afraid, at her age, the decline may be quick and then I’ll need something urgently and won’t be able to find something or — worse — she won’t tolerate a cross country move. 

Thank you for reading this. Just finding this site makes me feel less alone but I’m sorry any of us (and our LOs) are going through this at all. Gentle hugs if you need them. 

loveskitties

You sure have your hands full.

Sure hope you have all the legal docs in order (DPOA for health and finance).  If not, you need to get that done.

What our LO says they want or don't want should not be the driving factor.  What is best for their health and well being is more important.

Until you can determine next steps about a move, it sounds like she needs 24/7 help in the home.  While it is nice that she has a boy friend, he obviously is not a care giver...just a companion on occasion. 

From a financial perspective if SHE does not have the funds she may qualify for Medicaid in her home state to help with care giver expenses.

Remember whatever actions you take, you are not doing it to her, but for her well being.

mainegirl222

Thanks for replying, @loveskitties. I do have POA but I believe I should connect with my LO’s attorney to make sure everything is as it should be and that I have everything I need to help her. 

And thanks for the validation that I’m not doing things “to her” but looking after her health and safety in the best way that I can. I’m feeling tremendous guilt for not being nearby and for wanting her to move out here but I need to let go of that and eventually do what will allow me to help her best. 

Thank you so much. 

towhee

Hi, welcome to the forum. 

Moving--Good to see you have the DPOA. While it is always best to avoid long distance caregiving a few key pieces of information, mainly financial, might help you make your decision. Your mothers care needs to be paid for by your mother, unless you are extremely wealthy. It can get horrendously expensive. If your mother might need medicaid to pay for AL or MC check out what each state will provide. Some states do not provide AL MC medicaid coverage, only nursing home level. Some CCC will not let a person enter once they have been diagnosed with dementia. Once you know your mothers finances, it would be good to immediately check out facilities, all levels, including nursing home/rehab, because something could happen tomorrow.

Getting her to accept help-Telling a PWD they need help usually does not go over well. Letting her think that somehow they are helping works better. Some people have said My friend really needs a little bit extra right now, I really appreciate your helping her out, or My friend is really feeling down right now, it does her so much good to get out of the house, or Mom, I just can not seem to stop worrying about things, it would help me so much if you would let my friend visit. If you can get her to agree with your friend visiting, maybe you can add services. Also, some people have used remote cameras or Echo Show to extend the time a PWD can stay at home.

Cynbar

I think the answer is clear in your mind --- you need to move your mother near you as soon as it can be arranged. Caregiving from this distance is going to be a nightmare going forward, she is 95 with progressive dementia and it's going to get worse not better. Most people with dementia think they're fine (google "anosognosia" if you're not familiar with that) and can't see the safety risks involved, so that is no surprise. The boyfriend has no standing here, at 99 he may not be seeing things clearly and doesn't want to lose his friend. You need to do what's best for her, and living alone across the country from your only child is not a good scenario if she declines or has a crisis. Plus, you need to conserve some of your own mental and physical energy for your husband and daughter. Sometimes, you just need to choose the best plan, even if none of them is perfect, and this seems like one of those times. Good luck, I can see in your letter how much you care about your mother and your daughter. There are posters here who have navigated long distance relocations, I'm sure you can get good advice for them if you decide to go ahead.

harshedbuzz

mainegirl222 wrote:

Hello everyone. I’ve been lurking since Tuesday when my 95 yr old mom was diagnosed with late onset early AD. I’m an only child who lives across the country from my mom with my DH and our teen daughter (Senior in HS). Our daughter has mental health needs (severe anxiety, self-harming, suicidal ideation). 

Wow and welcome. That's a lot of moving parts for one person/family to juggle. You seem to be sandwiched between the unhappiest of circumstances- a soon-to-be-adult-child with mental health challenges which will preclude a timely launch into independence and  an elderly parent who is actively fighting the loss of her own independence. This will likely require some delegation around care needs. In terms of priority, one's own children come first- especially in a situation where your child is about to age out of you having a say in what they opt to do. Mom comes next, but even so, decisions about her car should not impact your security in retirement.  

My mom is in the early stages of AD and wants to stay in her own home alone as long as possible.

That's already happened. Job well done.

She has a 99 yr old boyfriend who comes over daily from a nearby town.

I would be inclined to take him out of the equation. It would be foolish to make any care plan dependent on the consideration of a 99 year old man. 

 She is not wanting people to come in to help her, and her boyfriend is insisting she is doing well and “backslid” when I was with her for the past month (both at her house in ME and at my house in WA). He doesn’t see the missed pills, the dropped pills, the pill put into the wrong prescription bottle with other pills, the not recognizing a long time family friend, the missed bill payments and confusion over finances (which I am now taking over), the inability to make simple decisions (answering “I don’t know”), the poor decision that she should be taking a walk around the block alone early in the morning or after her friend leaves in the evening.

He's lying or he's had a cognitive shift of his own that prevents him noticing this change. Either of these make him unsuitable as a voting member of your team.

Mom hasn’t accepted wearing a medic alert button and she is balking at me having a friend come in weekly to organize her pill box or to help her do laundry which is downstairs in the basement if her house.

TBH, it sounds as if your mom has already or will soon progress to the point where she needs more than electronic devices (assuming she was compliant and still capable of learning to use new devices). Devices and drop-in checks might be enough in the earliest stages, but likely won't be enough very soon.

I want to move her to WA to an ALF or maybe a CCC (because staying in our home with us and our daughter would be difficult for all of us and stressful for my mom if teen is self-harming or screaming)  but this will mean leaving her boyfriend and the home she built with my late dad in the 1950s.

Long distance care giving is a special challenge. Her safety comes first. If your mom were well set with a great LTC policy or was wealthy, you might be able to engage a geriatric care manager and caregivers in her home. Barring that, you have a range of options which will not make her happy. The way I see it, you could place her in a MCF in town near her boyfriend so he could visit with a plan to move her as soon as he is no longer able to. This risks a situation where she might progress to a point where she can no longer be moved near you. Or you could move her to a MCF near you. 

On one hand, I understand this and wish to honor her decision.

She didn't have a decision, she had a wish. A decision to remain in her home would have come with a solid plan to age-in-place meaning an assessible home and cash/LTC policy to fund care.

OTOH, with my suicidal/self-harming teen who is going into her senior year I feel that I have two people whom I love with my whole heart who need me very badly. I feel like a wishbone.

I feel your urgency on this. I was fortunate that my son's mental health issues were improving when my long distance parents crashed and burned. But, TBH, they were a distraction when I needed to focus on DS. (I, too, am an only. My parents split the year 1200 and 300 miles away, my son is on spectrum and has co-occurring GAD, ADHD). In your shoes, I would consider residential treatment for your DD if it has been offered because you have so little time left to be the one calling the shots. 

 I have a part-time job, too, that I love and need to keep to help my pension accrue and to pay for all the things these two people are going to need.

 If I’m with one, I’m neglecting the other. I have no family nearby to help with Mom in Maine as she is the last of her own family and my dads siblings are all gone now too. I have a handful of dear girlfriends who can help a bit but she is not their family. Things would be so much more manageable if she were out here in WA, nearby. 

All true. You do need to take care of yourself and your husband's security in retirement. 

Your mom, though, should be paying for her own care and that means your travel as POA. To that end, moving her now is the financially responsible option. Her home and assets should be liquidated to pay for her care. Should she live long enough to run out of money, Medicaid is her safety net. 

At what point should I just make her move here? It sounds so mean but would decrease my stress level greatly and allow me to focus on both her and my teen. Then  the money I save from not flying across the country every 4-6 weeks to visit Mom could go into her care instead. I would still call her every day as I’ve done for years. I would visit her 3+ days per week at minimum. And I would be here to help DH to manage our daughter’s mental health issues. I feel selfish but I want her out here nearby. 

It's not selfish. She has tasked you with looking after her well-being, there's no need to make it harder than it has to be. As the disease progresses, there will likely be emergencies. It is a lot easier to drive 20 minutes to meet her at the ER than to schedule the next flight out some time tomorrow. (Trust me on this- more than once I have flown into MCO as the only passenger not wearing mouse ears)

Anyone been in a similar situation?

Sort of. In my situation  dad had dementia and mom did not. She, however, fought me around many of the decisions to be made. She wanted to go back to FL for the winter after dad was diagnosed, wasn't happy with me for arranging with the police to dispose of handguns, let dad drive AMA and therefore, without insurance.

Any tips or thoughts?

I would bite the bullet and move her in the next month or so. You'll need a fiblet to get her to come with you. Perhaps a little vacation near you. Maybe the doctor wants her to do some rehab, so you check her into a MCF under the guise of it being a fancy rehab center. You can use their furniture to start and move her things in later. 

I would get her set up and then go back to ME to clean out personal items and things you'll want to keep. Then arrange with the best Realtor available to stage and sell the house after she's out. If she has some nice things, you might find someone who will empty the house on consignment. We did this for my aunt's place on the Casco Bay. A man pulled up with 3 trucks- one for the dump, one for the local Goodwill and one for auctions. We even got a check for a portion of the proceeds. Otherwise, I'd look into something like Maxsold to sell off the contents. 

You'll want to set your mom up with medical care. Get any pertinent records from her existing docs and her medication list. If the MCF has an in-house doc I would be inclined to go with that person. If she needs specialty care, you'll want to line that up. Given her age and dementia diagnosis, you might want to make some choices about how aggressively she is treated. We went to a more palliative approach with dad but did keep his Pulmo to treat his COPD, his urologist to continue his treatment for prostate cancer, audiologist for hearing and his geriatric psychiatrist but ditched things like derm checks and retinal specialist.

I just returned to WA after that month with Mom and I feel so overwhelmed with what I need to do. And I’m afraid, at her age, the decline may be quick and then I’ll need something urgently and won’t be able to find something or — worse — she won’t tolerate a cross country move. 

It feels like a lot because there are so many moving pieces to this. I would tour MCFs near you and find out what you'll need to do to make the move. You'll want to know what their COVID protocols are, what training staff uses, what activities are offered, how the pricing is done (dad's was OSFA, but some places have tiers with additional fees for medication management, 2 person lifts, incontinence care), how they address behaviors and under what circumstances would they ask her to leave. 

At her age, I would probably try to move as soon as possible. She is one broken hip from being placed in a SNF in ME and being unable to move to a MCF near you.

Thank you for reading this. Just finding this site makes me feel less alone but I’m sorry any of us (and our LOs) are going through this at all. Gentle hugs if you need them. 

windyshores

I gather you have Power of Attorney. Are you the primary medical proxy? If so, I would try to get the proxy "invoked" due to dementia. I was told this also invokes the P of A so you would be in control of all decision-making (and signing) in your mother's life. Also, get on her bank accounts.

Your focus needs to be on your daughter right now, especially if she is in her senior year of high school.  And I am sure the stress of COVID is not helping. I wonder if your mother's move can be delayed until your daughter is more stabilized. (I have a kid with bipolar 1 and another with medical issues while dealing with mother with dementia so I understand.)

If you are taking over finances, that is one thing down. Much can actually be done remotely and online.

Medications are the big challenge, it seems, as well as safety on stairs for laundry. Can you set up a system for meds that you can monitor? Would she tolerate someone coming into her home to administer meds, if the MD told her this was a good idea?  Of course, aides generally require 4 hour stints so they could also do laundry.

This situation gets easier as the dementia gets worse. At least fiblets are more effective!

You could start by looking at CCRC's or memory care facilities or assisted livings or board and care homes in your area.  If you find one that you like, you can start planning the move.

Moving her, cleaning out the house, and selling it are big big tasks and I am just afraid that it will take focus away from your daughter at a transitional time when she needs you the most.

It's tough to hire help when your mother rejects it. So one other option is to put her in a facility in Maine while you work things out. It might be easier to convince her to go to "rehab" (the easiest fiblet seems to be rehab, but I really mean AL) near her home.

Get a doctor involved.  So you aren't the one telling her to do things!

Iris L.

I am in the position of your mom although I am not as advanced as your mom.  My aim is not to become a burden on my family members or my friends.  That's why I am making plans and taking steps.  Your mom has anosognosia and she is not cognizant of the dilemma she is placing on you.  You already have a plan.  Now you must implement it.  

Iris L.

King Boo

@harshed buzz.  You are an awesome, knowledgeable oh so helpful to so many posters.  I got downright teary at all the detailed info you provided this inquiry.  

@the original poster - save the most excellent, detailed response, it will be of future guidance to you and help your resolve.

Form the fiblet, and keep living the fiblet.  Mom is just coming for a visit, to get stronger, because winter is coming, and she doesn't want to slip on the ice and break a hip, and your doctor needs you to get stronger; there's a leak at the house, I'm taking care of it, my friend Johnny lives down the street and takes care of it, Jane wants to see you before she leaves for college,  etc, etc, etc.   NEVER try and have "THE CONVERSATION" that she cannot absorb and process.

You have no choice but to move her.  Don't waste energy agonizing over this because the care path is clear.  Her care needs drive the decsion making (YOUR decision making).  Making life and death decision from afar stinks and frankly is really not possible. The chips fall where they may, and THAT is a way worse feeling.

 I would suggest you look to Memory Care which has a higher acuity of care and can absorb more symptoms that a typical AL.  Some AL have what I call Memory Cares in disguise; very involved but not quite nursing home ready residents. They are a true find. 

I had littles when I started my elder care journey.  One parent had a pretty terrible exit because I 'respected' their decision (which wasn't a decision at all, it was masking and severe cognitive impairment).  One parent had as good an exit as possible because of a very harsh learning curve.  Which didn't cancel out my pain and agony about the first.

Never question kids first.  Your daughter has her whole life ahead of her.  I hope her treatment path brings wellness and better days.

Jo C.

Hello mainegirl, this is indeed a very challenging set of circumstances; I am so very sorry.  Harshedbuzz and King Boo have given excellent advice and I would copy their Posts to refer to.  First responsibility is to your daughter; that is a complex situation that cannot  take shortcuts and as it is, she is graduating this year and will soon age out of your care unless special legal provisions have been made or unless she is very compliant.  Your mother has great needs but they must come after daughter's safety.

I am truly so sorry about your mother's situation wanting to stay where she is in her beloved home filled with memories of many years; it is an emotional attachment as well as a secure feeling attachment.  It is what she knows.  You wanted your mother to be able to live in her own home as long as possible.  Mainegirl, you have already seen to that.  As long as possible has already been reached.  She is in a position where she can no longer live safely independently in her home; she is unsafe on multiple levels on the 24 hour continuum and she refuses any assistance.  This will only continue to get worse.  If she was to stay at home, she really needs someone with her on a 24 hour basis as dementia knows no time schedule. Since she is in the early stages of her dementia, she feels no different and dynamically insists upon her own wishes. Of course, that cannot continue and someone must be the "bad guy." It would be good if her doctor "ordered" care, etc.  If he/she is the bad guy, it may be better accepted.

Assets to afford care are a part of all of this. Does she have sufficient assets to pay for a 24 hour care aide or more likely, to pay for the costs in a care setting?  Her home may have to be sold, but that is something that can be a necessity despite the emotions surrounding such a decision. 

It would be key to any and all planning to immediately do some computer searching regarding alternative living settings for your mother both in Maine and in Washington.   When you see a few settings you feel may be acceptable in each state, then give a call and speak to the Directors regarding your mother to find out what is and is not acceptable for someone in your mother's circumstances AND their ability to continue caring for her as she moves farther into her dementia.  Since you do not plan to have her in your home which is seems best under the circumstances, you need to know where she would be best served for living conditions.  Once that is known, it is the point at which you can begin to set potential plans into place in your mind or in concrete action.

This needs to be done quickly as winter is already hitting Maine and it will get far worse; in addition, the infection control specialists have given us forewarning that in all probability, there will be a significant surge in COVID nearing the end of and after the holidays.  Both of these situtations of weather and COVID surge can very well make traveling extremely difficult. 

I agree with the kindness of using a "therapeutic fib," to get her to Washington if that will be your decision.  A "visit" would be the idea and she may have to be at your house for a few days, OR the chosen facility could be a center for older adults to stay rather than using a cold hotel (or all hotels are filled up.)  You get the idea and you know best how to present this to your mother.

No matter which way you go, this will cause an expense of  your energy and time but when all is in place it will be a huge relief. Guilt can sometimes tap dance on our heads when having to make such decisions; but as another Member here taught me - it is NOT guilt, but regret.  I believe that.  Regret for what must be, but we do what needs to be done out of love and we are not doing something TO our Loved One (LO); we are doing something FOR our LO.  We keep them safe and secure and guarantee the level of care needed. 

You have some decisions to make with your husband as to how to move forward whether in Maine or in Washington.  If this were me, I would probably opt for the move to Washington. Reason being that the disease will advance and it can do so quite abruptly, and also abrupt healthcare issues can arise out of nowhere including need for hospitalization - all of this making the long distance travel and management issues even more of a difficulty.

Let us know what you decide and how you and she are doing. We will certainly be thinking of you and we truly do care.  With warm thoughts and best wishes being sent your way from one daughter to another,

J.

raisinggirls

After walked a hard road with my mom, I also suggest you find MC close to your home and start the process. One you can visit easily and often. When there is an opening, I would get her room ready, fly to go get her and bring her to WA.Don't tell her it's permanent. You don't owe the boyfriend any explanation. After she is settled, then deal with selling the house. A local realtor should be able to help you and guide you.

If your mom is upset with you and doesn't adjust well to MC, you'll be ok. You don't want to have any regrets and in my experience, this is the only way to do that. It just gets worse.

Good luck.