I have got to get this off of my mind

abc123

or I may go off the deep end. Alzheimer's disease has taken my mother thru no fault of her own and my dad has made the choice to let it take him too due to NOT BRINGING IN PROFESSIONAL HELP. That is HIS decision, NOT MINE. I am so sick of this scenario I could scream. HE has also made the decision to remain living 500 miles away from me. Yet, I am expected to be readily available to care for her whenever HE has something to do. I returned to my home on September 10th to deal with the aftermath of hurricane Ida. He just called for the third time asking me to come back because he has something to do that involves a 5 day trip. 

If he would have hired a care team when I left on the 10th this would not be an issue. He should have hired a team at least two years ago. This is not a money issue. This is HIM not accepting reality and he is ruining my life. I am miserable and exhausted. Our relationship has turned into a tug of war. He is so hard headed. He has refused to research Alz, he has refused to join a support group, he has refused to reach out to anyone but me. God forgive me, I wish he would leave me alone. He has made decisions to suit himself. I wish he would leave me alone. She is stage 7 now and its all a big surprise to him because he's selfish and stubborn. I hate this disease. He calls almost everyday, sometimes multiple times with a play by play of how many times she has soiled herself or the furniture. I don't care anymore. I just want to be left alone. I hate this disease and thanks to him, I hate my life. HIRE A CARE TEAM. Hand pick a care team and run the show! What is he waiting for?

I wonder how many other hard headed, selfish people are out there in the world who are caregivers, by themselves because the choose to be?

Michael Ellenbogen

I am sorry you are dealing  with this, especially since money is not the issue. I am not sure what to say but I do hope things get better  fr you.

Quilting brings calm

Oh, abc123,  I feel your pain.  Hugs to you. I wish we could be saved from selfish, stubborn, hard-headed in denial parents.  I’ve followed your story for a year  now, and I know you’ve followed mine.  You’ve tried multiple times to bring in help, and he has shut you down every time.  I made 3  of those 12+ hour drives before the medical crisis that brought them back to our state.  And that move meant they didn’t have  a place to live, so assisted living it was.   

As far as I know the only  thing you can do is say no.  I can’t come.  Here is a list of respite facilities that you can arrange to place mom in while you are gone.  The minimum stay is x days, at x cost.  Here is a list of hospice agencies that you can call.  Dad, if you want to be free to come and go, then place  mom in a facility. 

I’m currently on a sort of modified  no visit strike-as much as you can be while still making sure bills are paid and medical stuff is handled. And I make almost daily phone calls to her too.she’s nowhere near as bad as your mom yet. I’m avoiding him.  

I think the stress of the non dementia type of parents that we have  is harder somehow than dealing with the parent with dementia  ===for those of us that aren’t 24/7 caregivers===. I would never intend to compare  what I do with offspring that live with their parents  

abc123

Dear Michael and QBC, I can't thank you each enough for your reply. I needed to be acknowledged, thank you. I needed someone to hear me. 

I'm so upset, I can't stop crying. I do feel better because of you both. Thank you so much. 

mommyandme (m&m)

So so hard and frustrating.  I’m really sorry.  The 2x4 that hit him upside his head didn’t help. 

Ignoring his phone calls is probably counter productive cause the wolf might be real the one time you don’t.   

Ugh, the anguish! The anguish is real.  

Whyzit

Dear Abc123, I’m going to echo what Quilting has said, JUST SAY NO. No explanation, no apology. Put it back on him, it is unfortunate he hasn’t found anything worthwhile in your efforts or suggestions. He obviously feels he can handle everything his way, so let him. Remove yourself from being at his beck and call. You deserve respect for what you have already done. Treat yourself with respect and maybe he will learn to also. Make yourself be unavailable and free him to seek help elsewhere. He has the money and the information, he just won’t do it because he can count on you to bail him out. Have his calls go to messaging so you can listen to them at your convenience and sort out what a real emergency is. Practice saying, oh my, oh dear, that’s too bad. I know you can take care of it Dad, let me know what you have lined up for yourself and Mom. 

Keep repeating until you believe it and eventually he may believe it too. 

I’m praying for you to have strength, courage and wisdom. Sorry you are in this difficult situation. 

jfkoc

Your post brings to mind something studied in college many years ago. It was The Family Ballet.

The Cliff Notes;

A family is itself a ballet which is choreographed with each member having a certain role/steps to dance. The whole depending on the preset and reliable functioning of each individual. When one person changes the ballet changes and the dancers on stage either adapt to the change or you might have to bring the curtain down.

I would like to add a little something about reality. I believe facing it becomes harder with the advancement of the grim reaper. I truly want to believe that I am capable of living as a fully functioning adult. I do not want to need help because that need goes down a slippery slope...a slope I do not want to acknowledge.

There was no way my husband would have fessed up to needing any king of care so I did a role reversal. I told him about a women who had been laid off and was desperately looking for some work. I asked him if he thought we could hire here part time. He thought it was a great idea and felt good about helping someone.

Two thoughts above. I hope in some way they may be useful to you.

 Above all remember it's all in the approach.

M1

I agree abc, there's no way you should say yes to this.  Sounds like it might be time to let his calls go to voicemail too.

I know it's easier said than done, but we're rooting for you here...

Ginsamae

abc - I'm so sorry you're stuck in this situation. I agree with what others here have said - just say no. I know it's difficult to do, but for your own mental, physical, emotional and financial well-being it is a must.

I also have to say that it isn't just hard-headed, stubborn parents. Siblings can be this way as well. MIL has moved to another state to live with one of DH's siblings so that DH and I can help our daughter with her any-day-now-to-be-born child (she lives with us), but we are continuing to get e-mails, texts, and phone calls about what MIL is doing. We told them when we took her up there what they needed to do (get dr appointments for both neurology and PC for prescription refills, cut off access to Amazon, monitor her bank accts, etc) but as far as I can tell, nothing has yet been done...yet we are still getting complaints.  Do they not really accept that MIL as she used to be is gone, do they think this is a temporary situation, or are they lazy? I don't know. DH and I had her for 16 months straight with no breaks, yet they've had her for 2 months and are "almost done." 

Michael Ellenbogen

Love your idea jfkoc

dayn2nite2

Remember the reply I made to Ginsamae a few months ago?  Here's my plan for you.

Buy new phone with new phone number.  Don't give to father.

Put phone he knows the number of on silent.  Bury phone 10 feet under ground.  Dig moat around site.  Fill with piranha   Surround moat with 6 aggressive dogs and appropriate fencing.

You're going to have to allow these calls to go to voicemail and reply every once in a while "Sounds like you need some help" or "mmmm, maybe you should look into placing her" and continuing to repeat that you CANNOT come there, maybe next year, you're not sure because you are very busy with whatever you are very busy with.

I'm sorry.  He is practicing the learned helplessness that has always kept you running back there.  Don't give in on this.

harshedbuzz

I am so sorry.

I had a somewhat similar dynamic with my own mother who was in many ways much more challenging than my dad who was the one with dementia. His baseline was somewhere around r@t-b@stard pre-dementia, so it's really saying something that she was tougher to deal with. While she did eventually come around with some "tough love" it was quite the process getting there. It was hellish for a while. I'd make progress in getting her to move closer and then had to deal with extinguishing her plans to go to Florida for the winter or she'd ignore suggestions around fiblets and validation and tell him things that would send him off the rails leaving me to drive over and deal with it. 

I wonder if it is about the money. My mom could afford help but she was loath to throw money at caregivers or a MCF because she was thinking about all of the fun things she could do with that money once dad was gone. Since his death, she has completely redecorated her house, filled her closets with new clothing and is talking up river cruises. 

YMMV, but one thing that helped me in this stage was understanding the notion of a reduced level of resiliency in the elderly. There's a lot of talk about how human brains aren't fully mature until the mid-20s; there's also a notion that even among those who have not had a cognitive shift, proactively dealing with hardship and change is harder than it would be for someone in their 50s or even 60s. It's almost as if mom had used up her lifetime allotment of spoons.

From one daughter to another, you have been dealt some uniquely difficult cards to play.

HB

Wilted Daughter

Hello,

There are some good replies to your post, but I'll add my 2 cents. Can you research local agencies (home health care, elder services, etc.) get contact information for each and request that they contact him directly? If she is clinically diagnosed perhaps you can request the clinician for a referral to home health agencies in her area, making your dad the contact person. 

You can request services for mom (referral), materials, and instruct them to contact dad for the details (scheduling, insurance, billing, etc.). Order the materials and have it mailed to your dad. You can act as a facilitator. Refusing to get her the help she needs may be viewed as neglect and if you are not able to come every time he calls then he may be forced to accept other options. Denial can run deep...

Hope this helps and things get better soon for everyone involved.

Quilting brings calm

==I wonder if it is about the money. My mom could afford help but she was loath to throw money at caregivers or a MCF because she was thinking about all of the fun things she could do with that money once dad was gone.==

HB  - in our case it IS partially about the money.  Dad is just sure they could live in a regular apartment or a house cheaper.  Of course, they can’t because he’s never been an adult in  his life and mom can’t adult any more.  No way they could handle anything more than they are doing in assisted living with me managing bills and medical stuff.  I’m so glad that I didn’t blink when I got them back to our state and went straight to assisted living for them while he was shell shocked.  I think he is just like your dad I a lot of ways.  

Back to abc- if  I remember correctly. - you had caregivers lined up before you even got there this last time and your dad said no after one came for the evaluation? 

Lucy 2011

This is my first post. Hi everyone. I feel all your pain. My mother was formally diagnosed 8mos ago w alz. It was such a devastating shock. Get this her older sister has very advanced alz as well! I never expected my vibrant brilliant interesting involved mother to develop alz.I truly thought she'd grow very old as her mother did and pass on. Yes she also has a rare form of behaviors that have been heart breaking. Frist she was flailing all over and sliding from chair to the floor at times. repetitive motions, rocking, hitting herself-i can go on. This has stopped due to seroquel in the morning. Now she has a severe form of OCD monitoring her sips of water every 15mins. It is now her daily job.She goes to work from 10a-1030p This all stemmed from a stint in the hosp with low sodium from drinking too much water. Her brain switched to this as a solution. So far we can't help. I want to bring someone in to work with her 1 on 1 CBT? 

Okay to that is my mom stage mild to moderate. She happens to have a husband of 40 yrs. He has been the thorn in my side. thankfully my mother made me HCP. I scheduled every scan every drs appt to get a proper diagnosis. Husband had he had his way would've forgone every scan, drs and geriatrician appt. He feels it's senseless, a waist of money etc. If grown distain for him during this life altering news. It gets better. for decades my mother has wanted to get estate settled. He's held back. Mom will not improve. I'm a planner. I refuse to sit on the sidelines-that is his thing. I got a elder law attorney to agree to settling/protecting assets, trusts, everything! Price being expensive yet fair-first husband stalls, then with my urging said OK. Yesterday, he makes my poor mom tell my brother and I-were not doing the planning. We both agree. Yes the same mother who has alz and hasn't much idea that the planning is to protect her and him. And to get her on Medicaid which she could eventually need for in home care. I will never send my mom to an institution. I want her to remain home. Husband is causing such pain and anxiety adding to the mix-my brother on I are suffering. We want to do what is right-husbands too selfish and uniformed.

My job is to get folks out of SNF who are stuck. I've been in many and none are acceptable. My mothers income will qualify her for Medicaid,but husband needs to sign "spousal refusal" It's a nightmare I want to stop and jump off. I am wishing he will disappear-horrible but he is a HYGE barrier to progress. All I want is peace to know when the time comes we are ready for MLTC and mom aging in place. Caveat; I'm in Rochester NY mom 's in Syracuse NY. No stress here though. TY for listening. Any advice appreciated. Lengthy! I apologize.

Lucy 2011

Yes it is sooooo hard to keep it together. I feel as though my heart will shatter or have a nervous breakdown minimally!!

BTW: Has anyone had to report a spouse of LO for not making sound medical decisions or refusing to have LO best interest at heart for the future? I'm seriously feeling that my current situation will go from bad to worse. Mom and Husband are both 87. His ignorance is profound and he will remain wearing his blinders until he crashes and burns. Albeit my mother will be the one who suffers.

[Deleted User]

The user and all related content has been deleted.

abc123

I appreciate the feedback and emotional support. a heartfelt 'Thank You" to everyone. Each one of you covered crucial issues. I am blown away. Tomorrow, when my head is a little clearer, I want to go back over each reply and make a bullet list of what was mentioned. I want to get it down on paper and use it when I do decide to speak to him. 

day2night! I most certainly remember your reply to Gin!!! I almost fell outta my chair!

Thank you all! I'd truly be lost without my forum family. 

dayn2nite2

Anyone who HASN'T had any experience with dementia could peek in here and think we're all a bunch of uncaring, selfish people.  Those who DO have experience with dementia AND deeply entrenched spouses who don't want people in their homes know better.

We understand.  Truly.

It disturbs us deeply to "ignore" calls and not fix everything for them.  But when you have fixed and fixed and your fixes are reversed the second you go back home, well...

Then you have to practice a more distant approach to caregiving and it mostly involves consequences of decisions made in opposition to what you know will help them.  Eventually a crisis occurs and often then you can force help.  Sometimes not, but again there are consequences the PWD and spouse will have to live through.  When it hurts enough, they will have to do something different.

abc123

dayn2nite2 wrote:

Anyone who HASN'T had any experience with dementia could peek in here and think we're all a bunch of uncaring, selfish people.  Those who DO have experience with dementia AND deeply entrenched spouses who don't want people in their homes know better.

We understand.  Truly.

It disturbs us deeply to "ignore" calls and not fix everything for them.  But when you have fixed and fixed and your fixes are reversed the second you go back home, well...

Then you have to practice a more distant approach to caregiving and it mostly involves consequences of decisions made in opposition to what you know will help them.  Eventually a crisis occurs and often then you can force help.  Sometimes not, but again there are consequences the PWD and spouse will have to live through.  When it hurts enough, they will have to do something different.

WOW! This is so true! I have spent the past years fixing, fixing, fixing, and it's all undone the minute I leave. The things I do, the changes I make or suggest are all done because I love them and am truly trying to help them. It's like banging my head on concrete! Thank you for this post dayn2nite2. 

abc123

UPDATE. I spoke with my dad yesterday, he called to ask if I was going to come to stay with mom. I said I can't come right now. He reminded me its three weeks away and I said I just can't come at this time. He seemed to take it well but I'm waiting for the "fall out". The conversation was short and pleasant. 

I want to thank everyone who replied. I have read the comments several times since I originally posted and have taken them to heart. When we are together at Thanksgiving I want to have a serious talk with dad. My sister will be there too, maybe even my brother. I feel it's important to remind him that the choices he has made is part of why it's hard for me to be available more often. He decided to remain living 9 hours away to be near his friends. I tried to respect his decision but it does impact my life and I want him to realize it. Not to mention, all his friends are men. You can't ask another man to sit with your wife while you go to the doctor or the grocery. You can't ask another man to help you pick up your naked wife off the floor. His only female friends are the couple next door. They are absolutely fabulous and are like family. They bring over a home cooked meal 2 to 3 nights a week. When mom could still go out, they would take them out for ice cream and a ride around town. But as mom declined further and further, dad started to depend on them more and more. They were going over daily to help him do things that professionals should have been doing. They are 65 and 70, they have lives of their own. They helped me a great deal with putting together a care plan and talking to dad about moving forward. The minute I would leave for home he would start to depend on them and the minute I arrived everything was on me. He was using me and them as the care team until the three of us put our heads together and said "No More". He has since called the home care company I lined up and he has hired them to come in twice a week for four hours. At least its a start. Hospice is still coming Monday thru Friday. The RN keeps me up to date with phone calls and the neighbors still spend time with dad but have made themselves less available for daily caregiving needs.

Yesterday when I told dad I wasn't coming, part of me felt a sense of relief and part of me felt like a schmuck. I would really love to be with both of them right now but I need to tend to the house, the yard, the insurance company-ewe! Progress is being made in my city but we have a long way to go. There was so much destruction, severe destruction. The people who live in the lower lying fishing communities (down the bayous) were hit extremely hard. There are people living in tents, waiting on FEMA trailers. I got a phone call from a married couple with 9 year old twin boys who are bouncing from hotel to hotel until FEMA furnishes a trailer to place on their property in Pointe Aux Chenes. They needed someone to keep their dog until other arrangements could be made. Chloe stayed with me for two weeks. I'm still delivering donated dog/cat food door to door/tent to tent. I'm grateful to be able to help in some small way. I'm grateful for all of you. Thank you.

Iris L.

abc123 wrote:

WOW! This is so true! I have spent the past years fixing, fixing, fixing, and it's all undone the minute I leave. 

This is because they, the PWD and the caregiver, may be cognitively incapable of executing what is set up.  They may be impaired.  Impairment of executive functions may appear before memory loss if the issue is early dementia.  Depression and anticipatory grief can cause impairment of executive functions also, along with other problems.  If they don't function, it's likely they can't function.

Iris

Space within

abc123~ you are completely allowed to feel everything you are feeling . 

 some of the things you wrote resonated with my experience. It sounds like you are the child your dad goes to the most.  I can completely relate to what you are feeling - the anger, selfishness. Who would believe this side of love ?     

 The best thing may be for you to do what you truly want to do.  Take care of you.  

Thank you for sharing !    

Lucy 2011

mommyandme's use of the word anguish is so profound and on point-it hit home. Finding words to express what we are all experiencing and how our heart feels is impossible.Only those going through caring for LO can fully relate. Don't take it all on if you can avoid it. 

Private pay shouldn't be on the table unless all the below has been explored. Private pay for in home care will devour ones assets in little time. Please read ask me anything. 

I live in NYS. Medicaid changes are lurking just around the corner. They will be drastic and make the application process much more arduous. 

I wanted to mention this tidbit of info. As most of you know Medicaid pays for in home care. Medicare pays nothing. Medicare offers EICEPT (for the most needy) it's BS! If you'd like to keep LO home w PCA services, MLTC is the best way to go. And you can be an employee of parent as well. This is called CDPAS program through MLTC vendor. Some MLTC vendors allow a split PCA and CDPAS. If parent has extensive medical needs CDPAS is the route to take.

Even if your parent/parents have assets, there are trusts to protect them. If you think your parent cannot qualify for Medicaid-try applying. There is something called a "spenddown" however that can be a reason to get Pooled Trust. If there's a spouse involved, yes it's more complicated however there's something called "spousal refusal." There are many legal loopholes to protect a person. 

In our world ideally we don't want our mother in SNF EVER. But there's no crystal ball right. I don't believe there is a such thing as a "adequate SNF." Before making the excruciating decision to place LO in SNF; look into aging in place options. Being home is the ideal. Of course there are extenuating circumstances. Even in the advanced stages care is out there. And don't forget respite volunteers. Many are skilled in ALZ.

Elder law should be part of your plan. They definitely know the ins and outs of the legal process of setting up estate plan and LO plan. It can be 6000+ however worth every penny in my book. Navigating all the legal aspects of the process of protection isn't feasible. There is help out there. Agencies can help with Medicaid applications. give sound advice and steer you in the right direction. 

Not to be a know it all. I just do know much of this for my job. I'm here for anyone.

XO to all. stay strong!

eaglemom

This is why the message boards exist, to help people. You've gotten some great suggestion and I'm glad your listening. One thing you can do to is to call the help line 800-272-3900 and ask to speak with a care consultant. They might be able to give you more advice.

I can't image the stress and mess your going through in the hurricane aftermath. You might want to chat with your PCP and be honest with the stress you are going through.

eagle

Jo C.

This is indeed a challenging situation which may have multiple reasons why the dynamics are as they are.   As already mentioned here, one reason may be that the LO has been "enabled" by a caring and kind daughter who has not yet found a way to put the brakes on the behaviors, so Dad continues to operate the way he always has.

And/or:

Another thing does come to mind, especially with the age of the parents.  It may well be that your father has cognitive issues that are far more subtle, but still affecting his ability to think and manage situations.  He may not be able to process matters and all the thought processes that must go into making such a decision and then actually applying them. 

Sometimes, a LO with cognitive changes seem to have nothing overtly wrong and they may seem stubborn, or worse and that may be - yet, they may already be on the cusp of their own slowly evolving dementia.  Some have a short course of this before actual dementia is evident; others can operate in such as situation for a very, very long time.   Scolding, badgering, insisting, arguing if such a hidden situation exists usually does not help as the thinking and processing is affected. 

It may be, that during the holiday dinner when there is to be a family "meeting" with Dad, that the siblings will already have spoken together and decided what decisions need to be not only made, but implemented.   Hopefully the meeting is to be started in a kind and caring but firm manner with no heavy-handed communication if not necessary so he would be more apt to cooperate.

NOTE:  It may be, that once the decision is firmly in place for the plan of care, that Dad will not be able to be the one to hire and set caregivers into place - it may be just too, too much to expect of him and his capabilities. He has a LOT on his own table to deal with and he is already not doing well with it.  May be that a family member may have to be the one to hire and establish the caregiver in the house.

It may also be that the hired caregiver will have to interact by phone with the adult child even after care is in the house.  Dad may not be able to manage matters that arise.  First things first - getting a good aide into the house.

NOTE:  From personal experience, I do have to say just WHO you hire as a care aide is extremely important.  It must be a good fit or it can cause failure of the endeavor.  SO . . . who would be the person to do the interview for hiring such a care aide?  That too must be decided.  IF you are to be the one to do all of this - it will take time to find and interview aides and hire one; then getting the aide into the house and established in what expectations are.   Not a positive thing to think about having to do, but once done and success is present, it would be worth the effort.

Then; failing setting adequate care in the home, there are options that must be considered for not only care but basic safety.  Would parents move to be near you?  If not, then even though one would rather not have an alternative living setting, there would be the need for higher level of care such as moving to a multi-level assisted living setting where there is assisted living for the parent(s) who can manage that level as there is still a need for quite a bit of independence, but there would also be a step-down unit for the spouse who needs memory care or even custodial care in  the same setting.   It is a matter of absolute need for safety and security and needs of aged, compromised LOs who could come to harm if adequate care is not present.  No matter what, it is a difficult situation.

NOTE:  There is no perfection in all of this - there is only the best one can do under the circumstances with the challenges at hand. 

I see that you are in, Dallas, Texas.  That area has quite a lot of service choices if one needs a care setting for LOs should the parents be able to be moved.   The parents are at such a distance that it does indeed create barriers.   Yet; a move for your father would probably feel dreadfully anxietous and even fearful for him at this stage.  Could you "invite" your parents to "visit" you if you have accommodations for such a visit?  Don't know if your mother can travel that distance or not.  If Dad becomes more comfortable with an area, would he be more likely to make such a move?

Just throwing some ideas out there since there is a very complex and needy situation that requires more permanent solution options.

As for Dad; it may be time for him to have a thorough physical exam and then an in depth Neuro assessment to ascertain if he is having either physical issues or slowly evolving cognitive issues of his own with very early onset of his own dementia which may be affecting his thinking and processing.

You have been doing so much and I do understand you must be exhausted both physically and emotionally.  Having been in a rather similar situation myself, I do understand how futile things can sometimes seem.

Also, the Alzheimer's Assn. has a 24 Hour Helpline that can be reached at (800) 272-3900.  If you call, ask to be transferred to a Care Consultant.  There are no fees for this service.  Consultants are highly educated Social Workers who specialize in dementia. They are very supportive, have much information and can often assist us in our problem solving.

I so hope that you and your siblings will be able to be successful in helping your father accept a plan and that it is successful.

Let us know how you are; we will be thinking of you.  With warm thoughts being sent your way from one daughter to another,

J.
 

Beachfan

Dear abc123,

I am happy to hear that you are making some headway with your mom and dad and their issues.  I hope it continues.  Aside from that, I wanted to applaud you for what you are doing/have done for those less fortunate than you in your area.  You have enough on your plate; no one would blame you if you put yourself and your personal problems first.  Your empathy and compassion for others is commendable; may you be rewarded one hundredfold.  Bless you!