My husband is 84 and suffers from dementia. I am 74. We have had a beautiful 38 year marriage. we have sailed and traveled many long distance adventures. His condition has been gradual for the past 9 years, but now he can't be left alone. I am using some companion services a few hours a week, but it is very expensive and confusing to him. I do not have a good relationship with his 2 children, and have to almost beg them to give me an occasional break. I am still healthy and adventurous .I feel so TRAPPED and so lonely.
It doesn't matter. It is irrelevant to the matter of caring for this man as he declines.
Now that I re-read OP's complaint, Simbaya is making herself a victim,
"I'M SO TRAPPED AND LONELY". Because she still wants to continue to have adventures, and the husband's condition makes that not possible now.
Simbaya, you CAN continue to have adventures. Place your husband in a memory care facility and live your life as you wish.
Did you spend all your money on past travel and adventures so that you now have nothing left to provide for his care?
If that is the case, then this is now the price you pay for those great adventures.
The bottom line is, You do not have to become your husband's full time caregiver. And, your husband's sons do not have to become his caregiver or your relief caregivers. There are other care options.
You have enjoyed a beautiful marriage. Try and enjoy these last years with your husband, before he is gone. If you don't want to take care of him, don't.
If you do continue to care for him, get some outside help, and quit making his condition about you. He is not trying to trap you. He is vulnerable and has no control over his dementia, and I'm sure he would wish this was not the case!
It is not your stepchildren's job to rescue you.
Nevertheless, I'd like to soften this a little.
I think that many of us do tend to think of our own lives and how they've shrunk to becoming a caregiver, so we inadvertently make ourselves a victim. Simbaya isn't unique in this. We're human and we can't be perfect.
Sometimes it's difficult to see our situation from a different perspective, especially while we're grieving our loved one who has changed irrevocably and we're grieving the life we shared with them, as well as who we used to be.
So, while accepting that our outlook may be distorted, we shouldn't beat ourselves up for falling into the position of victim - we weren't the first and we certainly won't be the last.
But, having recognised that we aren't helping ourselves, it's time to pull up our socks and to make a start. The first thing is to let go of any thought processes that aren't serving, and change our beliefs about our lives.
E.g. believing that it's wrong for our loved one to go into care, or believing that we can't be happy again without them by our side, or believing that we can't do this alone. NO! That type of thinking is what traps us, so we need to turn those thoughts around in order to change our lives.
You can't change others, only yourself. So, that's where you have to start if you want to see changes and improvements in your life.
What you do not mention is the relationship you have with them and perhaps this isn't even necessary. The focus here is that you feel overwhelmed with the ongoing need to care for your husband with limited resources, and that you feel trapped and want to enjoy your life as best you can while you can.
The issue as I read it isn't about the stepchildren stepping up to care for their dad. The need is for you to decide how to handle the situation you are in considering how you want to live your life.
My question to you is:
Why are you focusing on his children?
As others have said, perhaps it is time to place him in a facility.
Have you considered this? Researched or (called/) visited any?
Do you have the income to place him in a facility or would he need to go to a nursing home (with gov't assistance)? and/or
Would you need to sell your home (providing you have one you own to sell)?
What are your options?
You need to decide how best to manage your situation moving forward.
And, if you are feeling GUILTY for wanting to live more of your life - being healthy and adventurous, I would encourage you to live as much of your life as you can now and moving forward. You have done a lot and the work caring for him will only increase. As I have said here, do not go down with a sinking ship. This isn't CRUEL to say, it is the reality of your life, and his.
Be sure to have all your legal documents in order.
You are very fortunate to have had such an amazing life with your husband over close to four decades. Your life is not over. Ask yourself why your focus - your question here - is on his adult children vs what you need to do to move forward, and deal with your own feelings of being trapped and so lonely.
You need to make time for YOURSELF to deal with your feelings of loneliness.
You have to decide how to do that. Even if you hire a caregiver for 4 hours a day, once a week, that is a start. However, you need to decide if, how, and where to place him (as his children have said they would do) - I agree with them. You have to make these decisions, not them.
Do not blame them for creating the life of their own (that they want) - and that you want for yourself. This is something you really want to think about.
Gena / Touch Matters
We are all aging. This is the inevitable.
I was drawn to your story because I too have had to watch the decline of my husband of 14 years, 10 of those years post-stroke. He can no longer sit up on his own, stand, walk, talk, or chew and swallow solid food. He is in diapers, which I change several times a day.
We met and married later in life. All of our children were grown. I have a complicated relationship with my 3 stepsons. One I respect and get along with quite well (he's the most like his dad), one is completely unreliable and immature, but he seems to welcome the relationship I have with him. The third doesn't like me. I don't know what he has against me. He can be a little secretive, shady, at least with me, but on the outside is very mature, strong, hard-working and principled. So, I respect him. But, we don't get along.
All of my stepsons have a family, young children and work hard at their careers. I would never expect them to compromise their family relationships or their careers to take care of their dad. Recently, I have talked with them about what they will do if I can no longer take care of my husband, their dad. They talked amongst themselves and decided they would put him in a nursing home. Not one of them is prepared to change their life to become a caregiver for a parent.
I respect that and I understand that.
Yes, it is lonely and it is hard work! Taking care of someone in this condition is physically and emotionally draining every day!
Personally, I am an introvert, so I don't mind the isolation much. It's not for everyone. You should find the help that you need. But don't expect his children or any other family to step in and relieve your burden.
Please, reach out here on this forum and provide updates. This is a great community of understanding care providers!
I hope that some of the more judgmental comments don't put our poster off.
It sounds as if life is hard enough without getting such comments off of strangers online.
But, she does need to figure this out for herself because she can't rely on the children.
I, personally, would advocate for a care facility because one person cannot do this alone. Alva's advice about seeing an elder attorney about separating finances for this seems good, sensible and practical advice.
Why "sadly"?
Are you suggesting there should be laws that require adult children to provide care for their needy parents? I honestly hope not, for a rather long list of reasons. But chief among them are for adult children who come from abusive households, adult children who are still raising their own children, adult children who would become indigent, homeless, jobless or otherwise needy themselves in order to do so.
There ARE states that still have familial care laws on the books - but they are very, very rarely invoked because Medicaid is now available for that express purpose - to provide for needy, elderly adults who need care. The only time I have heard about familial care being invoked recently, the parents had basically given their son so much money over the years that they no longer had any money to pay for their own care and the law was invoked to claw that money back by forcing the son to provide care for his parents.
But they are rarely invoked because everyone's situation is different and not everyone has the bandwidth, financial ability, health, free time, proximity, or even desire to become their parent's caregiver. And there are other resources available if the elderly either fail to plan for their future OR are unable to do so.
That's not to say that many of us have not given it our all to help our family members. But not everyone can do it. And not everyone SHOULD do it. And not everyone wants to do it.
They have there own life , time to figure out how to have yours or some of yours.
You can't change other people, to want to do anything they are not will to do, nor would you want people taking care of your husband that don't want to, for whatever reason.
Use your resources to either hire in home aides to care for your husband or place him in Memory Care Assisted Living if you don't want to be "trapped" as a caregiver. His children are not beholden to care for him. Its your job as his wife of 38 years to figure out his care, either by you, by paid caregivers or in managed care. As it would be his job to figure out, after 38 years, if you were struck down with dementia or another terminal illness.
Good luck to you.
In a perfect world people should do this and that, and "love covers over a multitude of sins" sounds great but the reality is that people are broken, communications can be misunderstood, and out of their hurt and disappointments they can become petty, vengeful beings because they cannot control the situation or regain what was lost.
Of course this isn't all or even most children and adult children of divorce, thankfully. It's definitely complicated, though.
Your post really resonates with me because I have an adult son who I didn't give birth to yet I've been his mother since he was two years old. His father and I were divorced for a while and I was still his mom. I always had time for him too. Is the same thing true of you and you husband with his kids? You had 38 years together and that's a long time. His adult kids weren't always adults.
It's not their job to become caregivers to their father. You will have to make another arrangement like placing him in LTC or getting live-in caregivers for him.
Yes, it's very expensive and will not be free. Depending on how you and your husband set up your assets and estate, you may not be able to afford to be adventurous and travel anymore. Many people are in the same situation as you. That doesn't mean their kids are going to be the free back-up plan.
When he left for the last and final time, he washed some clothes, packed them, and never came back except to come and check in. He didn't give my mother any money. My mother would have to call this woman's house to tell her husband to call home regarding the bills. He and his lady friend did a good deal of traveling and none of us were invited except for her children and my middle brother. Our family became divided after this.
After mom died, dad married this woman less than five months later. My grandmother called and told me. I asked him why didn't he tell me. The excuse was I didn't like his wife. I think the real reason was that he was ashamed to tell me.
From my husband's and his brothers' perspectives, no matter how nice of a person the step-mom is, she is not their Mom. There can be resentment for now having to "take care of" or help another Mom that they have no emotional connection to. They don't see it as their "job", especially if your husband left their Mom to be with you. But maybe he was widowed when he married you. Still, you don't replace their Mom.
Your husband will most likely precede you in death. You now see that his kids won't lift a finger to help you (but may become "active" if they smell an inheritance that they may view as "rightfully theirs"). When my FIL died many years ago, 2 of his sons were shocked and angered that they didn't "get anything" even though his widow was still a young retiree and would need what was rightfully left for her own support. So, the writing is on the wall and you must plan well for your own decline and related care.
But even in non-blended families, there are adult children who choose to not help. One cannot assume other people into a caregiving role. I agree with other comments that you take it as is and spend your savings doing appropriate legal planning and getting good-quality care for the both of you. I wish you all the best as you do so.
When you marry a man or woman who has kids, you have a moral duty to be a parental figure to those kids even if their mom and dad are still alive. Even if they live with their other parent (or parents these days because few people have full siblings anymore).
If a person cannot become a parent to those kids they can become a friend. When a man or a woman had kids with someone else you as the new love interest or spouse has to learn how to share the love and attention. Yet too many times there is competition between a new spouse and the old kids.
This problem is easily avoided. Don't marry a man or woman who has kids if you want all the love and attention exclusively.
You will find here that the vast majority of us, having done the caregiver thing ourselves, are huge proponents of getting our ducks in a row and planning for the future - one that doesn't require our own children to provide hands-on caregiving when the time comes.
You mention the dreaded double-edged sword. You are in a caregiving scenario for your husband of 38 years - but you are not the mother of his children - AND you do not have a good relationship with them. I, like Grandma1954, find it odd that after 38 years in the family, there isn't at least a working relationship with his children.
I'll go out on a limb and hazard a guess that there is some history there. (I mean I was only part of my abusive, narcissistic FIL's family for 30 years and still helped with his care - I would go so far as to say I could not STAND the man, but I love my husband and he needed my help so I helped until we could find another option)
Your title says "adult kids don't like stepmom". Your post says you don't have a good relationship with them. Either way - if you are having to beg them for an occasional break, and they are not offering to help because they want to help their dad (let's leave you out of the equation entirely - because I'm thinking maybe their relationship with Dad isn't so great either) - then you have your answer.
They are not your solution.
It's time to look into other options. If he cannot be left alone you really only have 2 options. You can hire caregivers to come into the home when you cannot be there - as you mentioned - very expensive. OR you can find a residential facility and have him placed, and you can manage his care, and go back to being his wife and not his caregiver.
Either of those solutions are equally loving and continue to provide his care.
Dad died in 2014. I haven't spoken to that woman until this day almost nine years later. Her choice of course.
No, I did not share in his care. After all I allowed the both of them to put me through, there was no way I was going to allow myself to be further used and abused by them. I would have more to say, but that kind of language is not allowed here.
After dad died, he left all of his bio children including his disabled daughter one dollar.
Sometimes adult children may have a good reason for not becoming involved as in my case. I did go visit him and I did have him over at my apartment before he died.
It appears that, for WHATEVER reason, his children do not wish to have anything to do with him or with you. That isn't something that will change, isn't something you can do anything about.
That means that, yes, you are alone as if they never existed.
I would write them that you are now having to consider placement of your dear hubby in care, that he is no longer safe at home alone and you are overwhelmed and cannot do this anymore. Ask if they wish to have a "family meeting" about this before you begin to explore the options.
They may, if the wish to protect any inheritance they figure may come to them, step in to help a bit. You will have to decide if it's enough. If not you should see an elder law attorney about division of assets and ways to protect your own money as your husband goes into the care he deserves.
You have had a good marriage, but this is no longer the man that you married. Sadly, you have limitation in what you CAN do.
So give them that chance to lend a hand or to take on care; if that doesn't work you need to begin to think about placement or hire in help. Because yes, this is now where you are at, whether anyone likes it or not.
It's not about who's a "good" child and who isn't. A good adult child who asks what they can do to help had a good parent. If they didn't why should they take on caregiving for that parent? Being elderly and needy are not good enough reasons.
You get what you give in life. The OP and her husband had 38 years to build a relationship with his kids and they didn't.
Does the Senior Service Center near you have any programs that might help?
Is your husband a Veteran? If so the VA may have programs that will help (and you may be able to get paid to be his caregiver, that would allow you to hire other caregivers on occasion.
Are there Adult Day Programs near you? If so getting him involved in that will give you a break a few times a week.
I can't imagine not having an at least cordial relationship with his kids if you have been together 38 years. That is rather sad on all accounts.