I see a lot of posts here about parents in their 80’s and 90’s and some pushing 100.
They have Alzheimer’s or another Dementia or Parkinsons etc and their children are trying to look after them while keep them in their home or taking them into their own home. Why? How old are you if your parent is this old? Where is your life? A lot of talk about guilt and not upsetting them. Respecting their wishes or they refuse to go. When my mother was placed in full time care because of Alzheimer’s she was only 65. My father was literally killing himself trying to keep her at home. Life was a nightmare and then he expected me and my brother to help him. He wouldn’t even put her in respite. When he had to have day surgery he thought the nurse would watch her for him but I spoke with her doctor who got a spot for her in respite and while she was there I requested another assessment. That was in October and she was in permanent care in the December.
Your parent if psysically fit and with the aid of these life extending wonder drugs will keep going like a freight train while you will be the one who dies first or ends up debilitated. Their generation is living way beyond their actual life expectancy and the body will find ways to shut itself down and if the body is kept going the mind will shut down.
If you have POA and legal guardianship then use it. Let others (whose actual work is to do so) look after them. Why beat yourself up over it. Don’t you have children and grandchildren and friends? Don’t worry what others may think. You won’t go to hell for it and you will become a happier person.
If you or they have the means put your lived one in care, do so.
I bonded with my coworker over listening to her struggles with dealing with her mother. She would play me the obscenity laden messages her mother would leave her. Her struggles with health care workers who would not show up for their shifts. She said I was the only person she could be honest about how she felt about all of this and not feel judged. We had another co-worker who had cared for her mother years ago and could not relate as she made it sound like the most fulfilling experience of her life. She could not relate and would often said "but it is your Dad/Mom" and I would respond "And? what does that mean? it doesn't make things any easier".
I agree with the poster who said keep with the topic and try to be helpful, not critical .
There seems to be a lot of information on these posts about parents, but less on husbands / wives / significant others. What are other couples experiencing?
i don’t know how we will go from now on but I am going to take my own advice and make sure I am prepared and ready
there will be a feeding tube in the not too distant future and I think that’s where I might consider it. Will see how it goes
i know I don’t want to end up resentful
You must have meant to be helpful, however, the post as written seems critical of those caring to soul search. Actually, dishing out guilt?
soul-search·ing defined:
noun
1.
deep and anxious consideration of one's emotions and motives or of the correctness of a course of action.
adjective
1.
involving or expressing deep consideration.
"long, soul-searching conversations about religion"
What is wrong with soul searching? Let's have more of it.
I haven't passed judgement on anybody. I've just stated my opinion just like you just did. I know people like me are the minority on here but we still have a right to post what we feel just like anyone else.
I never ever said taking care of my mom was easy either cause it wasn't.
Just cause you and others on here have had rough childhoods doesn't mean you have more of a right to post what you feel on here. By the way, I didn't have a support system. I had five unhelpful siblings who chose to let me make all the hard decisions and do all the leg work and no it wasn't all sunshine and roses.
People such as yourself post on any thread they want so I'll count my blessings on any thread I want as well.
long and involved the care giving stint can be. It can go on for decades. Many of
us do not have support systems in place to begin with, due to divorce, illness or
due to the demands of care giving itself. Having to care for children, work full time, take care of more than one home, pets, and all the other day to day responsibilities on top of daily care giving is akin to building a house of cards. One card collapses and the whole structure can go down with it. That can be a care giver's illness, a child that is struggling, financial difficulty, etc. The demands of care giving continue on unabated. That's when a lot of folks hit burn out.
A lot of us here were also abused and/or neglected as children. Yet we still love our parents and try to help the best we are able. Often we have rushed in during one crisis that we think will be a single event. A decade later, having helped with one crisis after another we wonder what exactly happened to our life.
Many people put a huge amount of pressure on the willing family member to "step
up" and shoulder a huge burden that, like an ice berg, has most of the time and
effort required hidden from view. When my father goes to the hospital and a "friend" swings by for a 20 minute visit, they suddenly think their contribution is on par with my hours spent with nurses, doctors, case managers, residential staff, administration, etc etc. not to mention the hours spent reassuring and calming down my father. These same folks think it is their place to criticize and add even more pressure. I don't buy it anymore, but nonetheless it is still stressful.
Some of us have parents who are both demanding and very ill. The amount of need can be overwhelming. When we have helped with cheerfulness and gone above and beyond, only to be subjected to criticism and manipulation by our parents, relatives, et al, we start to feel betrayed and resentful. That isn't hate it's a normal reaction to being taken advantage of.
To those of you who are blessed to have good memories, at least one good support person in your life, good health, and enough money to not have to face your own old age destitute, I say good for you. That is wonderful. But please do not presume to think you know us and what is in our hearts. Nor chide us, or not so subtly shame us for feeling tired and burnt out. That is not hate. It is exhaustion and a kind of grief. We are watching our parents die and realizing we will never have the chance to know them nor to experience their love. We are also
grieving the loss of our own lives, the missed events in our children's lives, our
lost connections with friends because we chose out of kindness to help our parent when they were in a grave crisis.
For those of us who have had parents that displayed an all consuming selfishness
throughout their lives, we may have foolishly forgotten this when our parents were genuinely at death's door. We still harbored our childish dream that when they recovered they would finally receive us with love. It is not hate that we are crushed when our immense efforts are met with ingratitude, indifference or criticism.
For those of you who have support, your health, and kind memories you can't even
begin to imagine what it's like for the rest of us. So do us all a favor and let us have a place to vent and learn from other's experiences how to set healthy boundaries and take care of ourselves as well. Many of us are in fact great care givers, but we have been put into high demand care giving roles that are also toxic and without support.
By all means continue to count your blessings, but please have the grace to refrain from continually counting them in front of those of us who have not shared in your good fortune. It should be patently obvious, but a thread devoted to finding a way to help a parent without losing ourselves is not the place to do this
I never criticized anyone and yet I got criticized, "holier than thou" etc. If those of you who responded negatively to my post would like to reread it I said I don't think everyone is cut out to be a caregiver and if it's a struggle and it ruins your life doing it, don't do it. I said I was shocked at how many people have poor relations with their parents.
Why so defensive? Yes, I was very fortunate to have the parent that I did. I thank God every day for that. I'm sorry for those of you who didn't. If you want to vent go for it. No one is stopping you but give me the same respect then and let me praise my mom. I'm certainly not gloating.
Thank-you C Willie and Countrymouse. C Willie, you are right. I don't know why I follow these threads. I guess partially cause there seems to be so many of them. I start reading out of curiosity and next thing you know I'm typing. Next time I feel tempted, I'll text you first and you can talk me out of it. :)
Well, it’s been half a year now. The words of my friend have echoed in my ears, as well as words posted earlier in this thread... often, people don’t know what they have signed on for before it’s too late to back out.
Caring for my MIL is slowly draining the joy out of our happy home, and has rapidly consumed all the emotional energy of my patient and dedicated life partner. Am I sorry? Well, no - as I’m not sure either one of us could have lived with ourselves if we hadn’t at least tried.
BUT - I can say that there is, and will be, a limit to how far we can go with this. Thank god, we agree on that. When her mother becomes more physically impaired, needing nursing care, or is more combative and delusional as her Alzheimer’s progresses, it WILL be time for another level of care. And I will not pretend for a second that that could, or should, happen in our house.
Furthermore, I would not want anyone doing that for me. So many of our parents simply didn’t plan. I will not make that mistake, nor will I leave it to someone else to be the solution, were I to allow my selfishness or bad judgement to lead me to such a predicament.
I used to look at, and very much admire, cultures whose elders are revered - seamlessly incorporated into their families, included and valued in their society, and afforded positions of respect and importance in their later years. I still do. However, I have come to understand that pretending that we can, in this society replicate that in our own houses, when our culture has lost the generational wisdom, and the social infrastructure to sustain it, is simply a fantasy. We no longer live (the vast majority of us, at least) in the small tight knit communities, surrounded by extended family and kin, in an environment which not only allows this to be possible, but supports and values caregiving.
We don’t know how, and have not been enculturated as to how to be these caregivers (as if anyone could sanely do it alone) - but even more importantly, we have lost the knowledge of how to be cared for, to gracefully receive support, while making way for the next generation. The combination is a disaster.
My MIL, and from what I read on this site, so many other parents, move in to a child’s home and expect to rule the roost as they once did - demanding, judging, criticizing, and failing to see their grown children as adults with their own lives, responsibilities, needs and opinions. They know no other way than to become the authority again, wielding power over their ‘child’. But now, they are authority figures struggling to do all but the most basic activities of daily living, and failing at even those. Angry and frustrated, they lash out, or simply send disapproving looks and verbal zingers under the radar, to alleviate their own profound frustration.
Dont get me wrong - I understand why they do... I can’t imaging how frustrating it must be to age in this crazy society of ours; to go from able to feeble, from mentally adept to muddled and confused. We none of us wanted this mess - and yet, here we are, trying to do our best.
And thats where it ends up. Doing our best. It’s important that we not judge, or pre-judge our neighbors, or ourselves, for doing the best we can, whatever that may be. For some, that means ‘sticking it out’ with our LO whatever the cost. For others, it means opting for the preservation of our own families, partnerships, sanity and heath, when it all simply gets to be too much.
It is empowering, until my emotions cloud everything that I have just got straight in my head.
My husband is supporting me as we find an ExtraCare living facility for my Dad.
He has Alzheimer's and has lived with us almost 3 years.
The constant stress and problems that you all know about and sadly share , has made me very ill.
I should have acted on advice from people who know, and moved Dad out much, much earlier. Instead we are battered, exhausted and wasting our time left together. I don't know if I can get over this even after he actually leaves our home.
PLEASE please find an alternative to inviting elderly relatives to live with you. Sometimes it works out, but for many others it's the beginning of the end of your peace of mind and health.
God Bless.
We all have different levels of coping skills plus we must consider our own family and the time we share with them and the help they need
My advice to everyone since is GET READY AND BE PREPARED Don't leave it to its too late Just because you get approval doesn't mean you have to place them straight away Just be ready for when the time comes
I have never claimed that I thought it was a blessing to care for my mom but considering how many times she sacrificed for me during the course of my life I could do nothing else but be there for her during her time of need.
While I understand not every one is cut out to be a caregiver and truly shouldn't do it if it means hating your very existence and then eventually hating your parent I am saddened by the number of people who declare such hatred for their parent when the only thing their parent did to them was grow old.
Hey, if you always had a strained relationship with your parent definitely don't become a caregiver for them. Why should you? But there are people in the world who actually loved their parents and want to take care of them and that doesn't make them martyrs.
There is no way I could have my father live with me. Our personalities clash. Even if we got along he is too needy and requires more help than I can give. He is 92 and I am 52. I can't give up my job to care for him. That would destroy my future. He needed help with everything when I had him over at Christmas. I realized that would be the last time I took him out of assisted living. He is in a safe place and is warm and fed. That is where my responsibility ends. I lose sleep every night wondering what will happen when he runs out of money. He helped someone out a couple years ago with money and if he needs Medicaid we will be in trouble....and no there is no way to get the money back.
We are keeping out seniors alive well past the point of them having a meaningful existence. My father has no joy in his life that I can see. Mind is going, body going but heart keeps beating. He had a decent life until about the age of 88. I can't stand to watch the never ending trips to the ER then rehab then back to AL only to repeat within a few weeks if I am lucky (his record of two days back in AL before going back to ER). It is not a life but an existence.
Do I feel guilty for not taking him into my home and caring for him? Heck no. If I did that I WOULD feel guilty for inflicting him on my husband and children.
The first line of my autobiography will be 'at the age of 69 I became an orphan' - there are some that are younger than me that need care - ruining your own health to help them in their old age is not a badge of courage but fool hearty because then you double those who need assistance unless you want to be your mom/dad's room-mate in a NH then pay attention to reasonable levels stress etc
This is not to say when you help them go into a NH that you have ceased to love them rather you are being realistic about the future - you may find that with the burden of everyday minutia taken care of that you will enjoy & love them more
An oft-cited 1999 study found that caregivers have a 63 percent higher mortality rate than non-caregivers, and according to Stanford University, 40 percent of Alzheimer’s caregivers die from stress-related disorders before the patient dies." From article WHEN CAREGIVER IS SICKER THAN THE PATIENT --Nextavenue
Yes, I feel bad that I placed Mom in Memory Care at a Medicaid facility. We can't afford the $12,000 per month, and she has no assets and hardly any income.
What gets me is that the place isn't very comfie. But then again, she never cared about that. And now, she's unable to dress or use the bathroom.
If you bring anything there, it gets "lost," even when they follow protocol and put her name on it. The residents are like zombies, and they wander in and out of rooms, lying on other people's beds, taking anything shiny.
My husband and I go nearly every day to sit with Mom for a little while. She always begs to come home with us. We are all she has.
My mom was that kind of mom: she took care of my Dad when he got cancer -- and then she took care of her Dad who was an SOB if there ever was one -- and then she and my brother took care of each other in their mobile home until my Vietnam veteran, crazy brother finally passed away.
Forgive me, but it does cause an achy feeling, and I was raised to take care of people who love me.
Old people who demand things be done their way, who demand to stay in their homes when they've become too big and/or too expensive, who demand to drive when it's no longer safe, who demand their lives remain unchanged are sucking the life out of family and friends. Friends leave but family feels guilty for establishing boundaries or saying "No, that won't work for me." And lord help the neglected spouses and children of caregivers who are unable to say "No", who won't manage expectations, and can't maintain healthy boundaries.
Thank you, Polarbear, for starting an honest discussion about dysfunctional caregiving.
On another note, I have told my children that when the time comes that I need care, to place me in a home if I can no longer voluntarily go in one. I feel that no one other than nurses, trained for this, can take better care of a person than anyone at home. I don't want any of my children give up their life to take care of me.
When my mom died, my dad told me that he wanted to go in a home. He told me that he didn't want to live alone and didn't want to move in and be a burden to any of his two children. He too stated that a home is where older folks belong. Unfortunately he had a double aneurysm on the day of my mom's funeral and passed away very shortly after that.
My dad always had a clear view on life which I must have inherited.
Just my two cents worth.
We had the attorney set up a Living Trust in my DW's name, DPOA, Medical Directives, pour over wills etc. We required our adult children review the Trust and other legal documents and allowed them to ask any questions they wanted to ask. I reaffirmed my wish that when I needed AL or MC, that I wanted to be moved 100 mi from where we live so it was inconvenient for them to visit. My DW and adult children are aware of my wishes, and the fact that I want them to live their own lives to the fullest, and to take care of their own families, and not give Mom any trouble as she goes about living the way she wishes. We've made our wishes well known to our 2 adult children who are ages 22 & 20 with a 12yr old daughter who vaguely knows about my wishes, but her brothers and my DW, will get her up to speed when she is mature enough to completely understand my wishes.. I have one adult son age 38.
Fortunately for us, we listened to our parents advice and have profited from their
wisdom. We have passed these lessons on to our children and taught them about how their responsibilities in life would evolve and their first priority would become their spouses and children, not their parents. Every family is different, we have all been guided by our faith and that is what has made this road so much easier for us.
I've been noting difficulty in completing tasks that were once simply, and begun struggling trying to find everyday words, much more frequently. I am beginning to shed responsibilities as they relate to our taxes, bills, and finances, because I am losing track of things. I am saddened, knowing I won't be 60 until July, and I am now unable to contribute much to our family's welfare.
Make a plan for your family and live by it and include your wishes for how your finances are handled, future healthcare is handled and funeral arrangements. This will be a great gift to all of your family.
I wish you well, your words hold lots of wisdom.
That said, I've decided to think more about me and what I want. I set some goals that are about ME this year and already feel a little better. Encouraged her to try some frozen meals. Going to set her up with Uber and/or Lyft. One step at a time.
For us, though, it's not about guilt at all. The timing to place her in a care facility, if ever, can only be after such time as we are forced to go the guardianship route. TMI to explain here (rogue family members, etc. make this very complicated), except to say that she's only 91 and her own mother lived to 106. We are trying to hold out as long as possible so that it will be more likely the money will hold out to pay for the care facility all the way to the end. Also, she is still mobile and some of her behaviors might get her kicked out of a facility! So we may wait until she's literally bedridden.
Anyway, right now she's staying in her own home and we are living with her. (Thankfully, it's a large home and we have our own space.) What has kept us sane is that we have a lady who comes in a few hours each day and does some personal-assistance stuff for MIL. There is also a home-health nurse who checks on her once a week.
I know what you mean about the extended lifespans many are living now. I keep wondering if the rest of my life will be about care giving. If my MIL lives to 106, my husband will be past 80 and I may be having to care for him in my 70s. Sobering...
You make some interesting and good points, imo. I think that one of the biggest surprises that I encountered when I started reading message boards for caregivers of seniors and those with dementia, is how danged guilty everybody was. I have wondered about it for years.
The biggest and most rewarding day for me, was when I was able to place my LO somewhere where she was properly cared for and protected. There are a lot of hoops to jump through to get all the paperwork done, the medical stuff done, the financials done, the actual move, etc. To me, it was a labor of love and I knew that if my LO was thinking clearly, she would hug me and say THANK YOU for looking out for me.
So, when I see loving family members who have sacrificed years of their life, doing everything in their power to care for a family member and they are miserable due to guilt.....it boggles my mind. I think I read that caregiver burnout causes this. It's not rational, but, I think that when the body and mind get totally exhausted, that we just develop irrational feelings and fears. I sure am glad there are message boards like this one to vent, share, and support each other, because to deal with guilt, when you ARE A SAINT, must be pretty awful.
Because of his aggression, I can no longer visit him, but one of my daughters does and he regularly tells her how much he loves his place. If he were to see me, he gets very upset and wants to come home and tells me that he has no Alzheimer's, just some forgetfulness.
Glad you were able to fix what needed fixing, but it's just not quite that simple for everyone. Especially when mixed in to all of it is grief about the LO's decline and soon to be death.
Every person has to decide what's best for them in terms of making the decision to transition their parent(s) to a community or not. Things to consider about yourself when trying to make decisions include impact of caregiving on your health, stress level, relationships, impact on other family members, job, finances, level and quality of care you're actually providing. Things to consider about your parent(s) include their overall health, cognition and behavior, fall risk, level of assist they require for self-care and other daily activities, mobility, safety (can they really be alone or do you cross your fingers every day when you leave for work or other obligations?).
If your only reason for not transitioning your parent to a care community is because of guilt, it's a good idea to try to understand and work through that guilt so that you can make the decision that is best for your parent(s).