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I take care of his financial needs because he has medical issues, 3 kids, wife has passed, and he's a working dad. He takes time off for a special needs child and it really cuts his pay. So my retirement fund is almost gone. But after reading the pain and heartache my living with him might cause I think I should maybe just go travel to another country. At 66 I think I don't want him to see me less than whole. Reading this stuff makes me realize I'm probably already a pain in his butt. I'm a single old lady who talks too much.

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I would suggest having an open and honest conversation with your son about the future, your wishes, his wishes and the needs you both have. Then work out a plan that works for both of you before the need to make those choices actually arises. Some adult children happily care for failing loved ones while others may be unsuited for the task. Every family is different and only you and your son can make these choices for you.
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Sounds like you're doing a LOT for your son!

But--you shouldn't be suffering financially so he can manage.

You're only 66? That's still young and you have many years still...

TALK to your son and see if this is working for him, what he would like to see, 2, 5 years down the road. The kids will grow up and leave, but I imagine they are fairly young still. Do you do a lot for them, care-wise, or does your own health prevent that?

If you feel you are a burden, you can look into 55+ housing that is gov't subsidized. A one bedroom apt would be all you'd need, and with health issues, you don't want the hassle of a large place. You can still work PT and retain benefits of subsidized housing--if you want.

It's really between you and your son. Sounds a little like he's taking advantage of you. Only you can make that decision.
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I don't see where he could be taking advantage. I see a young widower trying to deal with 3 children, one having special needs. My SIL lost jobs because of a SN child she was raising. Employers are not sympathetic to needing to take time off for Dr. visits. I see two people helping each other. The problem is going to arise when the MS gets worse. My cousin did well but she had a husband who literally did everything. He worked f/t. He came home and cooked, cleaned, did the wash. TG she could be left alone in the beginning later on he was retired. The cost of the meds were staggering.

I agree, you and son need to sit down and talk with no distractions. No kids interrupting. I know, that could be hard. Are there other grands that could babysit.

Your son may love having you around. Ur a woman's influence for the kids. You may find out that at this point it works. But you do need to think about your future. Son cannot care for you and 3 children too.
There's Medicaid homecare. Medicaid LTC. Where I live there are HUD apts that are pretty nice. They take 30% of your income as rent. All u pay is electric and TV. There are Senior buses. What I am saying is I think its great you are looking ahead. Always be open with son and tell him to be open for him. Does he miss work because of appts. Do you drive? If not, maybe you can use a Senior bus to take gchild to appts. Depending on the childrens ages they should be taught how to do things around the house.
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anonymous897489 Apr 2019
your answer is good. but I will never qualify for medicaid if I have given money to the support of son and grandchildren at least if I apply within 5 years. I did have 2 minutes on the front porch and was able to tell him that. lol..he was shocked, the magnitude of the situation is hitting him. but yes there is another "good " set of grandparents that do help. and one grandparent from a previous child that doesn't . How did the Brady Bunch do it? LOL...He's self-employed but because its in construction, He looses some customers if He has to take a day off. He's backed up about 4 weeks to get to their work as it is. hard to find good workers. and he works even when he's not there doing the office stuff. the children will not do the chores. I even put up a chore board for the oldest. He's a special needs and is now on meds but they only make him worse. and I have no way to enforce it. my son tries, but with the mental aspect of special needs it doesn't work. hopefully this counseling will . thanks for your answer. it was uplifting and positive. I feel better. I just don't want to add to his problems.
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You say that like it's a bad thing. Lol, okay that was bad I admit but seriously, if your son has talked with you about this, then let him see you "less than" when your MS flares up. Seriously, there's nothing wrong with being vulnerable in front of your son. Doing so means your strong as his Mother and you raised him in a very loving way. Talk to him and see what he thinks about sharing quarters. No two parents have the same relationship with their kids, but you know your son as his mother better than anyone else. By talking with him about the options as one adult to another, I'm sure you'll find a solution that you can both agree on together.
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anonymous897489 Apr 2019
I spent sunday with the 3 year old, and a 7 year old and a 12 year old. All boys. I had just spent the whole week with a 7 year old granddaughter and the other grand there. the other grand sat on her butt and smoked cigs on the porch. I cleaned and entertained the granddaughter. I loved it. but I am dead and in pain today. MS robs you of what you want to do and it does it suddenly without warning bells. or you wake up and the weather is not your friend but you made promises for taking the kids to the drs. I think JoAnn's answer is the situation. my son has to work. I don't qualify for medicaid, never will. I give him too much support in dollars so unless I stop that the then look back period when I need it probably wont be met. but thanks for your answers. If we live together and he remarries i will be a burden. if we live in the same house now and save the money, I will have to move out eventually. just another move. I'm tired of moving. 13 moves in 20 years already. JoAnn, I was supposed to take the 12 year old to 2 appts today. I will miss his counseling one. I just can't move after the other stuff. I will probably be ok for the 3 pm appt. my son just didn't realize I'm not the old mom that raised him. and yes, I should let him see the me, but then I see the anxiety in his eyes. He's still grieving. He's trying to figure out who wants to be with a man thats 39 with 3 kids and one step that he spends time with. I will try harder to make plans to care for myself. but I did so want a vacation. I haven't been anywhere since 1998. oh well. such is being a caregiver, that will then be a burden if I don't get it together. thank you all.
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I think with a little maneuvering, you and your son could work things out. He needs to step up and make the kids pitch in. There are small things they could do to make things easier and take some of the physical strain off you. You need to stress to them that you are all family, you work together and help each other and everyone wins. Promise them something like a pizza and movie night once a week as a reward for doing chores. Hire someone to come in once a month or so and do the heavy cleaning. Plan doc appointments one or two at a time during the time of day you feel the strongest - don't overload your day or you will undermine your health. Take advantage of grocery and pharmacy delivery services. Make it clear to the family that there are times you need to rest. Want a vacation? Put the kids in summer camp for a week and go. There are camps for special needs kids that are wonderful. The Medicare 5 year look back doesn't need to be a problem. If the two of you are sharing a home, you are just contributing your share the living expenses, not giving him monetary support. And as for your son's chances for another relationship, you sound like a potential mother-in-law any woman would be happy to have - you won't hold him back.
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Thanks everyone. I appreciate the ideas. I had gotten the idea that caregivers didn't really want a care needer around once they had out lived their usefulness. I know how hard caregiving is. So I should live with him until I need to be bathed and changed, then I should gracefully move into a specialized care home. But last time I checked, you had to have about 200k to enter one, have already gotten on a list, be able to pay about 3,000k a month and hope they accepted people with Brain disorders. Not necessarily memory disorders. and of course it would be nice to be near my family. They are building more of these too. so I will keep on look out. MS is a pretty nasty little disease for end stage but then end stage anything is nasty. It does usually require special equipment like respirators and such. so I think Medicaid will be needed. that does away with the 200k and the 3,000-6000k a month care. I have learned a bunch. I wish you all the best and try not to burn out. Like they taught me in nursing, you can't water the patients until your bucket is filled. Its also helpful to remember that the care you give today, might come back to you when its your turn. But then, you might not get it back you never know.
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The choice is both of yours. But, informal caregivers, like your son, may suffer from being overwhelmed. Especially if he has children and working full time.
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anonymous897489 Apr 2019
your right.
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Are you on Medicare, since you are age 66? I'd look into that, as well as Medicaid, for the future, if you need it. It seems that you used the two interchangeably and they are very different programs. Just don't want you to overlook what you are entitled to. I hope you can work it out. In my early childhood, there were 4 generations of my family under one roof. It was awesome and there were so many benefits. It's not for everyone, but, for some the benefits are priceless.
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You mentioned not qualifying for Medicaid because you have too much income. You may want to speak with an attorney who specializes in elder law about a millers trust This will enable you to keep some money in trust and be eligible for services. There are tiered senior places that offer independent, assisted, memory care and skilled nursing and will accept medicaid if money runs out so you won’t be kicked out. However first talk with your son. Hope this helps.
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with his special-needs child your son will need your help and you are someone he can trust with his child. from the information you provided, I believe you would be better off if you two live together, and he can pay you something. baby sitters are not cheap. with you around there is no reason why he should have to take time off from work. now if there are other family dynamics you should know best whether to move out or not.
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As you read these post you must remember a lot of negative comments are just caregivers venting because they feel safe to do so here and everybody needs a safe zone for venting caregiver or not 😉
now as far as moving out I think the person you should be discussing this with is your son you are probably a lot more help then hindering to him. My mother is 94 and lives with me and I wouldn’t have it any other way, are some days emotionally and physically demanding? Absolutely! But trust me when I say just knowing that I am doing for her all the things she so lovingly has done for me makes it All worth while. Now as far as the MS goes yes your condition may degenerate as time goes on but you may never have any new episodes/legions and stay as you are now and could actually improve. Spoken from experience as my brother had MS and went from initial diagnosis in wheelchair to walking sticks to cane and actually was walking totally on his own before he passed of heart failure. Bless you as you travel this journey and enjoy those grand babies.
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Perhaps try talking with a geriatric case worker. They know the facilities around you, and may be able to help you find one that will work with the money you have. An elder lawyer can also help you protect both you and your son in regards to the Medicaid look back. Hugs to you!
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thanks I appreciate that this is a venting site. totally understood. And yes, everyone needs to vent. "But after reading the pain and heartache my living with him MIGHT cause I think I should maybe just go travel to another country. " I do not live with my son right now. I would not do that. I am having trouble breathing today because of the heat. He actually told me that he was sorry I was frustrated with him...you see guys on this site, in the heat at 6:50 pm in Georgia after standing trying to discuss business with him, I was having trouble breathing. That made me sigh and made my voice crackle like Neil Cavuto...and this isn't the first time he mistook my disease as being frustration. And that is why I said, I think after hearing the venting that you can do, and knowing he won't be able to vent anywhere I should go live further away. However, I did catch that his brake line was leaking while we were standing there. I'm short and he's tall so I was looking down as he was venting on my sounding frustrated. Hint: there is always a silver lining if you look for it. So when you can't take anymore of your abusive parents, then by all means, go to a happy place in your mind even if its following an ant trail under a work truck. I am not living with a son. I gave him the bad news that there will be no more monetary help due to Medicaid rules. I'm not signing my house over to him. he has his own. I cried last night because I wake up at 4 am every morning, miss getting hugs, hate where I live. love the neighbors, its the busy road behind me that wakes me up. I have my input from all you wonderful folk. I can take it from here. Thanks!
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Please contact A Place for Mom. The councilor there was a huge help to me in finding an assisted living facility for my mom in the area she wanted. She pays a flat monthly fee and if she runs out of money she can stay there and go on Medicaid. (Medicare doses not pay for assisted or nursing home care)
It does not have fancy gyms, physical therapy rooms, swimming pools, etc. that she wouldn’t use anyway. Meals, laundry, housekeeping, activities etc are included as well as group outings, help with showering and dressing if needed.
If her physical or mental condition declines to the point she can’t care for herself she can be moved to a sister facility with a higher level of care, and cost of course.
Please reach out to A Place for Mom, Senior Services, any local church service before you go to the expense of a "Geriatric Attorney." I spoke to one who told me it would be a minimum of $2500 to get my dad signed up for Medicaid!
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Since you say that your retirement fund is almost gone, your best option would be for your son and family to live together with you.
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Oh my goodness.  It finally occurred to me that if he's still grieving, then the kids are too.  Any possibility for a 'Big Sister/Big Brother program to help (not for the grieving, but time spent)? You have thought about it a lot. Keep venting, thinking, and resting.  Big (((HUGS)))
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Dear Ann O’Nym, Cheer up! You are not useless, certainly not a pain in the but. You are actually in a situation where you are competent, caring and very useful for your son and grandchildren. My daughter aged 40 has MS, and she and son-in-law are coping pretty well with a very bouncy 4 year old boy. You are doing much the same. There is nothing wrong with your brain or your common sense!

You need to pace yourself. Be sensible about what you can do and what is too much. Being a martyr and then collapsing in pain isn’t sensible. Put a bit more effort into making the kids step up to the plate. There are many (too many) 12 year olds who are caring for younger siblings and a single parent with a mental health problem - a lot worse than what yours are facing. Your grandchildren need to know that the family needs their help right now. Pushing them some more is the best thing you can do currently for them and for your son.

See if you can find a free financial counsellor who understands all about Medicaid, and make a plan for the time when your son has found a wonderful new partner and you need more care. Your worst assumptions probably aren't right. Then do your best until the time when you want put your long term plan into effect. Remember that women hold up half the sky, and that includes women with one or two problems, like you and my daughter!

Lots of love, Margaret
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At 66 you're not an old lady. For a start.

From your original post my first thought is that you are having a really bad day. You sound terribly depressed - not just venting, really low, really despairing. I don't know as much as I'd like to about MS, but am I right in thinking that depression is a common aspect? Is this something you should be reporting to your healthcare team?

Then I read the replies and your follow-throughs, and I hope venting has helped a bit? - sounds as if it has. But all the same, my two cents - spread the load.

I have my usual barrage of questions -

when did your DIL die?
how old are the kids?
where's your son's Dad? - forgive me if you've been widowed, I'm just wondering why he can't maybe pitch in

- but the main point is that you both of you deserve help and support and it doesn't have to be only from one another. Neither do you have to leave the area to spare him from your being a potential burden.

Please keep in touch and let us know how it's going. Best wishes to you.
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