I'm not doing so well...introduction
This is my first post, and I’m not doing so well. My Mom and Dad are 90 and 93, and live about 90 miles north of me in their own home.
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Hi there, sorry you have to be here.
First, I am going to tell you that one person CANNOT take care of TWO people with dementia. Even if you were living with them. I assume you have your own home and life to take care of and there aren't enough hours in the day to take care of the two of them 24/7. So there's that.
Second. Are there any legal items done previously that give you the ability to make decisions on their behalf? If so, great, your decision needs to be to remove them from the home (they are not taking care of themselves AND your dad is likely being neglected by your mother). When is the last time either of them showered/bathed? If you don't know, it probably is months.
If not, I would recommend seeing an attorney to petition for emergency guardianship. Then, both need to be placed in memory care and your father, if he is spending 20 hours a day in bed, might even need a skilled nursing facility or hospice.
I am going to say this because I think you'll understand what I mean. At more than 90 years old, the "good news" is your dad doesn't have to suffer many more years unless your family has a habit of living to over 100.
Your mother's attitude will likely continue to deteriorate toward you and you just have to know you are PROTECTING HER and not harming her in any way. She could have 5 or more years like this so get ready because it's going to be ugly. She cannot stay in the home even with help.
You need to connect with a therapist and could also be an antidepressant is in order. This is a big thing you are taking on but you're also in the position where there is no other choice. While you're choosing an attorney, I would get an idea of what memory care or nursing homes are NEAR YOU and pick a few of them that match their financial ability. If they will need Medicaid you'll need to take that into consideration too.
After they're out of the home, you can have a professional inspect it and see what repairs need to be made and then you can decide whether it's worth doing or whether you need to just sell it "as is" and use the money for their care.0 -
Steve, you are in as tough of a position as a caregiver can possibly be in. You have my sympathy.
Dayn2nite2 has excellent advice for you. My mom absolutely didn't want to move, either. I got pushback from my oldest brother about it arguing that mom didn't want to move. Thankfully my sister and other brother were supportive. Mom was so stressed and so convinced it would be bad, but now that she's moved, she's much happier and safer where she is. I am 1000% glad she moved.
Your mom is going to treat you horribly throughout the process, just know that going in. It's not her, it's the dementia. It can help to depersonalize it a bit that way. But her words will probably still hurt.
Hang in there.
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First, I am so sorry that you are going through this. Your parents are quite elderly and they will likely not live much longer, especially in the condition you describe. I differ from many people on this board in my views and agree that it would absolutely be better for them to pass having lived long lives. Since we have no control over when that will happen, you need to take steps to provide the best care you can and prioritize your own health. What is the legal situation? Do you have POA? If not I would suggest you immediately contact an elder law attorney and get guardianship. Your parents need to be in a facility, what you are describing is past the point of in-home care. Don't think about the house and cleaning right now, my advice would be to do what you need to do legally to move them to a nursing or MC facility. Once they are there you can put a plan in place for the rest.
I am also glad to hear you are seeking a therapist. Be sure to convey to that person how much stress and anxiety you are feeling and be willing to consider medication that may help you to cope in the near term.
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guitarstevie wrote:
Mom smiles and says she’ll think about it.
Your mom has anosognosia. She truly believes she is fine and that she can "think" about things. She is unaware of her limitations. If you try to correct her, she will resist and get upset so don't confront her unawareness. The members will teach you work-arounds to get things done.I want to try and honor their wish to stay in their own home, and it is feasible if they accept the help they need, but they don’t.See above, anosognosia. They won't accept or ask for help.I don’t want to force anything on them.Yes, you do have to force them, with gentleness. Keep in mind you are doing things FOR them, not to them. Pay attention to the suggestions and proceed with confidence that you are honoring your aged parents, who can no longer care for themselves.It would crush them, and I know I would be haunted by that till my dying day.Many PWDs do better with better care. Better care is not a cure, though. They are in the December of their lives.
I really think it would be best if they passed, and it hurts me to say that. Their quality of life is very poor. There’s no joy left in their life. Simply surviving takes considerable effort.They can still have some good time left.
I think about them continuously. Recalling so many memories, and filled with so many regrets. I just can’t imagine my life without them.You're in right place. Keep posting. Many here will help you!
Iris
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Thanks for writing. No, none of the legalities are in place. I can't imagine having to live with the disappointment my parents would have if I were to put them in a facility. I feel it would haunt me continuously, until I drew my last breath. I can't do it. It would destroy me. I don't contend that I'm right in my thinking.
Do you participate in any of the online meetings?
Steve
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Thank you for writing.
Steve
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It is important to have the legalities in place.You need to have power of attorney for both of them for financial and health reasons as neither of them is capable of making decisions for themselves. Parents in their 90's even if they don't have dementia usually have legal papers giving a child POA etc.
Hopefully a therapist can help you as you sound like a tortured soul. You need to think about your health. Seriously you could die before them the rate you are going and imagine what your parents would feel like? I feel for you.
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Thank you "Elshack". You are right. I am heading up for a visit with my folks tomorrow, and will be bringing it up. I will be calling an attorney next week.0
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When I read, " I want to honor their wish.." I felt like that was me about three years ago.
It has taken me a while to truly understand that my mom has no ability to reason, rationalize, or understand consequences. What she wanted 10 years ago has no bearing on today. Today, she is not that same woman.
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The journey of an only child can be either easier (because there is no other family to hurl garbage at you and create complications) OR much more difficulty (because you are the sole decision maker).
That being said, the primary decision maker is often a lonely place to be. Those who have friends mean well but absolutely do not 'get' it, nor is it their responsibility to provide direct care (though a kind ear for you is a good thing).
Your care of your parents will become much more clear if you can take the time to fully understand what the disease does to thinking and the loss of rational decision making.
That allows you to, when you are not upset, to draw a firm line in the sand to assist you with decision making. Old Mom and Dad of yesteryear, vs. the current situation. It all snarls together into some sort of unholy, torturous mess otherwise.
What Mom and Dad say now, and said in the past, has little to nothing to do with the current situation. Simply, because they did not have a crystal ball to foresee what would happen.
For example - the old promise extricated from children "Don't ever put me in a nursing home" is a patently unfair thing to say to your children. It is spoken out of fear - fear of aging, the view from being healthy to the inevitable decline of old age - and often based upon a bad experience from their childhood or for a relative.
I promise you I speak the truth - my LO's life improved 300% over living in his own home when I found an excellent placement amidst other doubtful choices. All done during after years of protests about care.
To be a good decision maker, the old days and relationship patterns must morph.
You are now the Parent.
It is a terrible place to be, when you realize that your own failure to act has hurt your parent.
It is a terrible place to be, when you realize your own inaction was negligent because your parent has less than the cognitive ability of a child to self care.
It is a terrible place to be when the ER physician asks the nurse why the patient they are seeing is so malnourished, where was their family?
Work with your therapist to learn what you have under your control and what you think is your responsibility and under your control, but isn't.
It will help you be more comfortable with your decisions.
The situation as you describe with your parents is not a good one. There is much in your post that indicates the need for 24/7 care and monitering. You cannot do that all yourself.
Most likely, one of them is going to have a hospitalization which will be the springboard for change. It happens this way for most of us. Be prepared with your first, second and third choice of a nursing home for short term care after the hospitalization for rehabilitation, with a game plan for staying after. The course can always be altered.
Most of all - we all do the best we can do. There are no perfect answers. There is no returning to the Mom and Dad of 20 years ago. But we do 'best as can be' solutions.
The disease does not reverse. When we shift our focus away from what has been lost, our decision making becomes better, dealing with the 'now'.
You are at one of the most difficult phases of the journey. Getting them care.
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stevie, I was where you are. Both my parents are elderly and needed support, but refused to move or get help. After my dad fell and had brain surgery, we put 24 hour carers in their home which was the only way they would be able to stay there. They hated having "those people" in the house, and I still had to do all the cooking, cleaning, emotional support, etc.
I found a great place for them, and managed to convince my dad to try it out "for a few months". I knew I would never be able to convince mom, but with one of them tentatively on board my conscience was clear. I moved them a few months ago, it's been a huge improvement for all three of us. Mom still complains but she's always been a complainer---however, for hours every day she is so happy to have other people to talk to, new things to look at, nice food. Dad spent a few months asking when he could go home but now has accepted it and finds things to be happy about as well.
Maybe you can get one of them to agree to try an assisted place, for a month or so? While their roof/plumbing/wiring is being "fixed", might be a good excuse.
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guitarstevie wrote:Please think about the other side of this double edged sword. Wouldn't you be haunted if you allowed something to happen to them? If they suffered because you didn't act and get them the care they need? FWIW my mother with Alzheimers did not want to go to memory care but has done great there since she settled in. Her cognition and quality of life improved immensely once she was getting the care her disease required. The facilities have changed so much since your parents were your age. Many are pleasant places with a a focus on dignity and quality of life and treating each like an individual. Please take King Boo's post to heart. None of this is easy and I'm sorry you are in this position.
I can't imagine having to live with the disappointment my parents would have if I were to put them in a facility. I feel it would haunt me continuously, until I drew my last breath. I can't do it. It would destroy me. I don't contend that I'm right in my thinking.
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GS-
They don't seem to have taken any steps towards their wish to remain in their home and they are too impaired, at this point, to do so. Is there a LTC policy for each? Are their liquid assets to fund end-of-life care at home? Did they take the legal steps to appoint someone to make this happen for them? A wish is not a plan.
One glaring problem you have is that your inaction is also a choice and one that could cost them and yourself dearly.
If your dad were to drive and be sued for everything they own. If your mom burned the house down attempting to cook? If one of the goes walk-about and isn't found alive.
What if a concerned neighbor feels you aren't acting with a sense of urgency and asks for a APS well check, they could end up with a court ordered guardian in charge of making the hard decisions you are facing. There's already a paper trail with your mom's poor care documents by the hospital, you'd be hard pressed to prove you are handling the situation.
HB
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I could not honor all of my mother's wishes. She wanted to live in her house "until I am carried out." However, she asked me to "don't let me do anything stupid." Which is it, Mom?0
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The thing is - there are no easy answers, what you are dealing with is just plain hard, but you have to look at the whole picture. At this point, you all are just an accident away from all sorts of bad. Get legal papers in order, then take the leap and arrange for care, it's very hard, but its the right thing. Good luck.0
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Hi Steve!
I too am an only! My mama is also a hoarder who dared me to touch anything. 2.5 years ago (at 94), I realized that she could NOT love like she was any longer! I was an hour away, and she was not caring for herself. When I looked into the fridge and realized how much rotten food was in there, I had a meltdown—right in front of her!!! I told her she COULD NOT live like that and she HAD to let me help her!! She reluctantly agreed, but if she hadn’t, I was ready to do whatever I needed to to keep her safe! I had begun to cry every time I left her house as well!
I was fortunate to already have POA, but at this point, you will have no problem getting guardianship as they are incompetent due to their medical conditions.
Take some time to look around your area for MC facilities and determine what you all can pay. I think you will discover that many are very nice )and clean—my favorite part!! You just have to do it!! And you can!!! And yes yes yes get into counseling…you deserve it!
This will work out! You can’t beat yourself up for caring—getting them to safety whether they like it or not, is what will help your more than anything. I understand the horror of seeing your parents with insects and rodents! I’ve been there! You can do this!!! We are here for support!!
My mama is almost 96 now and has had a wonderful year plus at assisted living and now is at MC—not “happy,” but well cared for. I can sleep at night knowing that!! You will feel so much better
Prayers and positive thoughts!!!
Kim
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Thank you for writing Dawn. I have explained the possible consequences of them not accepting help may be declining health or an earlier death.0
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You're facing a terrible situation Stevie. Many here have been in a similar situation and can sympathize. You've received some great advice. I want to second Dayn2nite2's statement that there is no way that you alone can care for two parents with dementia.
A friend helped care for her 90-something parents who both had dementia but she lived in their house along with her two sisters. Plus they hired home healthcare workers to come in shifts to assist with bathing, feeding, toileting, entertaining, etc. 24-hours a day. And they had hospice aids coming to help every week. So there were at least 6-7 people working round-the-clock to support those two parents and keep them safe and in their home. It was an incredible undertaking that stretched for years.
You CANNOT do all that by yourself. It is not humanly possible.
When a parent reaches their 90s unless they're in great health with a perfectly sharp, sound mind there is no way they can continue to live in their home. That's the sad reality of aging and living so long. The children need to get them to a place where they will be safe and well cared for. That is incredibly hard to do. Emotionally. And physically because a lot of work and heartache is involved (going to a lawyer, touring care facilities, and then prying them out of their house possibly against their will). It's a long tough journey.
The good news is that many people with dementia do much better in good care facilities than they do on their own. The environment is emotionally supportive, they're getting good nutrition, sometimes for the first time in years, and family members can be with them without the stresses that go along with nursing someone's physical needs. Friends have reported that their relationships with their parents actually improved and grew warmer and richer once they were in a memory care facility.
If you haven't already you should phone your local Alzheimer's Association chapter and ask to speak to one of their counselors. They offer counseling and great advice for free. Most chapters also have local support group meetings. Ours are conducted every week via Zoom.
Don't ever hesitate to post questions here. The people here are great. I don't know how I would have gotten this far in the journey myself without all the great advice I've gotten here from all the members who've been so generous with their time and words.
Good luck!
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Steve, I assume you mean you have tried explaining to your parents that their actions may cause health issues or an earlier death. This is where the problem lies. They can't make decisions any more to ensure their safety. You, as their only child, have to take over. The rules have all changed, sorry to say. Your job now is to keep them safe, not necessarily happy. And I bet they aren't too happy in their current situation anyway. I am afraid they are somehow going to get reported to APS and a guardian will be appointed, which will take you out of the equation all together. I think what will haunt you the most, for the rest of your days, would be for you to lose all control over them OR get a call that something bad has happened.0
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Steve: first of all I totally relate to the feeling "Why don't they die already?" The body keeps on going even when the mind is gone. It's not fair, and it's really hard.
Second, you need to understand that if you are able to place them in a facility, that is the best thing for them. You are helping them. Internalizing guilt for doing what must be done is not a productive approach for your own mental health. Children disappoint their parents in many ways, but making sure they are properly cared for is not a reason for disappointment. Frankly it sounds as if there are underlying issues here.
I hope you get counseling and are able to untangle your feelings of unworthiness. It sounds like you could use social connection too, that will help with perspective and being able to do things other than dwell on your parents. Loneliness is at pandemic levels in our society, even before COVID. Find a church, a birdwatching group ... take a look at the Meetups offered in your community. Believe me, I know that it takes effort to connect. But it's a fundamental need of all creatures to be connected.
Good luck.
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I feel your pain and your want to do the right thing. I don’t have any advice, as I just joined the group today, but I do hope things change for you and them soon.0
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Hello, Steve - I understand and empathize. All of the rational, pragmatic advice in the world can't appease the heartache and stress that you, as a caregiver, feel. You are doing the best thing possible in seeking help for your own physical and mental well-being (though I'm sure my ninety-year-old mom with dementia would just say that's yet another example of my mean-spirited insensitivity, self-centeredness, etc.). Take care.0
Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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