[sstuart]

I know that there are others out there that are helping care for their parents. I would love to have some place to go to vent. To commiserate. To share ideas and frustrations.

My mom had a stroke 2 years ago and has had several since. She is no longer able to drive, so I have to take her to appointments, shopping etc. I am lucky because at this point she is still able to live by herself, but we have to check on her frequently. She refuses to go live anywhere else and she keeps EVERYTHING!! I also have a full time job and a 11year old and 5 year old.

She says to me--Well I help with my mom like this--YEAH--and we were all grown or in college!! Sometimes I feel like she is being very selfish--then it makes me feel selfish. UGH!! I hate this!!

I know there are others out there--Can we support each other??

[NJNative]

My 77 yo mom had a stroke AND a heart attack 2 months ago. She had had two ministrokes before that. She has been living with us since December, when she had the second ministroke. She can no longer drive, and is infirm as well. She needs to be helped up and down stairs, needs someone to help her get ready to bathe, etc.

Fortunately, I have a job where I can work from home three days a week, and right now, my husband is unemployed so he looks after her the other two days. If he gets a job, we'll have to get a private aide for those two days.

We have just sold her house and are in the process of emptying that out now. Settlement is June 25. I have an 18 yo son (I am an adoptive mom), and my brother has been staying with us temporarily, too, since he is in the process of a divorce.

So we have 5 people and a dog and a cat here. It's a regular zoo.

Robin

[Rylee45]

It was be great to have a place to go that was for people who are taking care of a parent. As you've probably read I am taking care of my mom. It's TOUGH to do and it's mostly by myself.

My sister who lives about 40 miles from us says her station in life is to be a "mother and wife" and she doesn't have time to help.

She tells me that I had nothing else going on and since circumstances are as they are with the house I am the one who should be taking care of my mom!

She as well as my other siblings don't have time for her. They don't visit or call or anything. They just ask me occationally how she's doing and don't even bother to ask my mom herself!

They're all laying out waiting for the inheritance. They don't figure they need to do anything for my mom except just lay out and wait for her death. It makes me sick!

But it would be nice to have a place to vent and get ideas too while I'm still able to take care of my mom. I am looking into nursing homes right now but haven't been satisfyed with any of the ones I've seen yet. I hope I'm seeing them in the real light and not the "guilt" light and nothing is going to be good enough because of the guilt trip my mom is putting me on about it right now.

Rylee

[NJNative]

I think a senior day center -- and we have several nearby -- would be a great break for my mom. When she's home with me, I am working, so she doesn't have much to do but watch TV. These centers have activities all day long, serve a hot lunch, go on trips, etc. Many if not most of the other people are handicapped in some way -- use a wheelchair, or a walker.

It would be especially important if my hubby gets a job. Because we are either going to have to get an aide or send her to the senior day center for two days a week anyway.

But you would think I was asking her to voluntarily commit herself to the nursing home for good! I want her to have something interesting to do for some hours of the week, that's all.

Any ideas?

Robin

[sstuart]

You know NJ, I agree, there are very nice day cares for the elderly and it does give them something to do. My mom complains that she doesn't like to sit and watch tv. She has lost much of her vision due to her stroke, so she can't read very well anymore. We wanted her to get a condo in a senior community--you would think that we ask her also to commit herself.
I wish I had better suggestions. That is why I started this thread , I know there has to be more out there.

Also Rylee--I wish that I could help you with the guilt thing. I understand where you are coming from. But you should not feel guilty. Caring for someone in your mothers condition is so OVERWHELMING. Esp. if you have siblings that do not help out. Wouldn't it be nice if your sister would offer to give you a weekend to have to yourself.

If anyone else out there is dealing with this or has dealt with this and has any tips--We are open to suggestions.

[Rylee45]

Before my mom had the surgery that paralyzed her in November she was going to the senior center almost everyday during the week. Her reason for starting to do that was my telling her I was going to put her in adult daycare because I needed a break from her and she found her OWN way to give me a break.

RIght now she's so scared to go anywhere even now that she has her power chair because she's afraid to have something going wrong (like a birthmom or getting dizzy) and not having me there to take care of her.

So, if she goes to the senior center I have to go with her and therefor he's not a break for me. It's a mess!

Rylee

[EZ2Luv]

I took care of my Momma for nearly 6 years when she got alzhiemers. I finally had no choice but to place her ina nursing home when I could no longer meet her need. Yes it was hard and definately a labor of love. I do not think I could care for anyone else except one of my paents. My Mom was combative and quite a handful early on and it was extremely challenging. My only other sibling is a younger brother and God bless him he was very helpful. I was the one with the flexibale work scheduale. My dad also was able to work until he was 78yrs old so I had most of the responibility during the day. Rightfully so as it is easier for a daughter to bathe and care for a Momma. I had 3 very small babies too. Thank God my MIL was able to step up to the plate and take care of them. Would I do it again? In a heart beat. I still visit Momma daily and feed her dinner. She requies 24 hour total care. If not she would still be home. My father is 86 and lives alone. I am also his carediver but thankfully he has no major problems except for being somewhat of a slob when it comes to the house because my Momma or myself when Momma got sick would do all the cooking and cleaning.

Early in my Momma's illness she did attend an adult day care and loved it. I had small children and needed to balance my time with them
As Momma's needs increased, my Dad stopped working to care for her at home because she could not be alone at all.

ETA~ i had no outside help at all. The only agency that I took advantage of was teh adult day care. My father refused any kind of help from outside sources and I agreed with him. People told me that I could have got paid for caring for Momma, but I could never accept a penny for caring for the woman who would have given her life and her last breath for me.

[thanksgivingmom]

I think it's great that you've created this space for people dealing with this! My grandparents have become INCREASINGLY reliant on my Mom (and Dad, but mostly Mom - she's their parents) in recent years. Due to illness, it looks like it's now going to be a full time job - they've even suggested that my sister or I move in with my grandparents just to be there.

We're not at that point yet, but I do try to pitch in and help my parents as much as possible. Currently, neither of them drive - so there's a lot of driving to appointments (Pops was having chemo/radiation about 30 miles away every day for nearly seven weeks), running errands - the bank, grocery store, pharmacy, etc. Even though I'm not the sole provider of their care, I'm becoming increasingly aware of how much work it takes.

The biggest struggle that I've faced so far is just how emotionally tiring it can become.

[thanksgivingmom]

NJ - do you think if maybe you went WITH your Mom the first couple times she might become more comfortable with the idea? I don't know if this would be possible for you to do, but if it works it might be a short term committment that could really benefit you all long term.

[Janeytwo]

Hey All!

I have not been in this position myself and so I will just offer my e-support, say my small piece and then get out of the way so you guys can help each other.

(((( Stacy and Everyone Else ))))

You know, I think there should be mandatory classes taught in senior highschool or college maybe that help people understand that there will be future challenges in caring for parents and grandparents. Maybe people wouldn't listen at the time, but when they need the info, it would be there in memory to be retrieved.



TG - thinking of you today (for both reasons if you know what I mean).



Anyway, my love and prayers to you all.

[Rylee45]

I'm getting paid to take care of my mom (which is why I can't pay anyone else to take care of her so I can have a break. If I do, I get taken off the program or so my case worker told me). I feel a bit guilty about getting paid to take care of my mom but I won't take money FROM my mom but I think it's ok to have assistance from the programs that are provided for a person to be taken care of at home.

They send me a statement every month with what my mom is supposed to give a "caregiver" for her part, based on her income from Social Security. If I weren't taking care of her and she was having to be having someone else coming into the house she'd have to pay almost $300.00 a month for her care to the provider. I absolutely WON'T take her money. But I do take the money from the program because it helps us getting more things for her we need (no one in the family will help us with her needs so it's very helpful for that too) AND it helps us pay our bills.

I had to quit the job I had when my mom had her surgery and became incapacitated. I really needed the money from the job I had and when they told me I could get paid to do this, I applied for it.

In doing this I have to be certified and have to have 30 hours of training in taking care of a person like my mom and 8 hour first aid certification too. They said it's state law in order to get paid to do it. I could do it for free but not for pay without the training to be an "individual care provider".

I was authorized to train at home with manuals so I don't have to go to classes however the 2 hour test I have to take next month, if I don't pass it, I have to go to in class training and do the 30 hours in class setting. I don't know how I would be able to do that because I can't get anyone to take care of her now so I can have a day out except my daughter and she's not always available.

But by my doing the work myself and not having someone else coming in to take care of my mom it saves her $300.00 a month and I think that's something good. She can barely afford the bills she has now to have to put that kind of money out for her care every month. That's on top of the prescriptions that aren't covered and the other things that aren't covered like OTC meds that she needs and her "personal" supplies and that kind of stuff. She barely has a dime left by the end of the month.

I just wish it weren't so hard to take care of her and getting into the position that I'd have to put her in a home. That upsets me a lot that it's coming to this because I really DON'T want to put her there but I just don't know how much longer I can do this before I CAN'T do it anymore. You know?

Rylee

[thanksgivingmom]

Thanks janey, and I do know

Rylee - I do know....we have had a LOT of the "when do the grandparents move" conversations lately. None of us want them to have to move out of their home (they've lived there for over 50 years) but it's all of us that take care of them, the home, everything.

At some point, you have to take care of yourself Rylee. Or else you won't be able to best serve your Mom either. I don't know what the "right" answer is - the "right" timeline for your family, but I hope you can find something that works for both of you.

[lahdh4]

I am becoming increasingly the care giver for my Grandmother as I am the only relative living close to her. The closest after me is my Aunt who is about 4 hours away.
She is able to still drive, approaching 86, so she is taking herself out and about but there are just some things that I know she can do but she doesn't.

[EZ2Luv]

Being a caregiver to a parent is a very lonely and isolated world. I had to take a leave from work after cutting my hours. Finally at one point I stopped working because my Mom was requiring more care. My Dad finally decided to retire well into his 70s and that was kind of a break for me as Mom could not be left alone. Mom did not qualify for any programs because of their assets so any pay would have come out of their pockets.
While my parents had great insurance (so they thought) it did not cover or touch any long term care..
This was another battle. They kept the same insurace plan they had when thye were a young growing family, never bothered to change things like planning for the future so it was abattle straightening out their estate. I won't even get into that one. It has been since Nov 2003 since Mom has been in the nursing home. The ONLY reason why she is there is because she required multiple peopel to meet her needs. My Dad is a frail 86 yr old and our fear was if she fell he would try to lift her(Mom is well over 200lbs).
Though I am a nurse one person providing care was not doable and it was not fair to her to be denied the care she required and deserved.
Of course the situation is different for my Mom as she is basically a 200 and something pound infant. She is uanable to speak or even mover herself around. However she is thriving and does smile when she sees us and will even give a kiss.
I waited until I basically had no choice to place her and it happened in a way where the decision was made for us. Mom had gotten a fever and UTI which landed her in the hospital. That is when the Alzhimers went into full swing and she could no longer feed herself, speak, walk ect. The hospital suggested skilled nursing facillity.(a fancy name for a nursing home) to see if she might recover some ofher ability. This did not happen and as a result Mom has been there.

Even with her in the home it is very important to be visable and advocate for her.
I see her daily and wouldn't have it any other way.

EZ

[Rylee45]

I know this might be stupid but the C.O.P.E.S case manager came today and she was really nice everything seemed fine. She said she thought I was doing a good job and that she didn't see any reason she'd have to make "suprize" visits however she probably would.

She told me that she would occasionally just stop by unannounced because that's what they do to make sure everything is "as it should be" and no abuse going on or other things going on and that I'm really home taking care of my mom and not leaving someone else in charge.

I know that I'm doing the best job I can and that there is no reason to worry about her "finding something wrong" but it's stressing me out thinking about someone showing up without notice to "check me out" in making sure I'm doing my job right.

After I told the woman that I do get a little grouchy with my mom sometimes and especially in the mornings and I felt kind of bad about it but I'm not always the most patient with her. She turned to my mom and said, "If your daughter gets more than a little grouchy, I want you to call me and let me know."

She also told my mom that she (my mom) was my employer and that I had to do what she told me to do and to let her know if I didn't.

I know this sounds terrible but having to hear all that and know that I have to be on my BEST behavior or get sent to jail or lose the money taking care of my mom upsets me and is stressing me out even more than I was before.

My brother in law was almost arrested while he was visiting his mother in a nursing home for merely telling her to "be quiet" (or he may have told her to shut up I don't remember) because she was yelling at him first and causing a scene.

Someone told the head nurse that my BIL had said that and the head nurse without knowing the whole situation or why he told her to be quiet called the police and they came and a whole bunch of stuff happened because of that and he hadn't even raised his voice at her. He was able to explain and didn't get arrested but the fact remains he didn't do anything worth having the police called and yet he was still nearly arrested over something that simple.

I've told my mom to be quiet when she's getting out of control and when she's throwing fits. I've raised my voice a time or two to get her attention because she wasn't wanting to listen to what I've said but at no time to I abuse her or do anything that should cause me any problems with the law. Yet now I have to worry everyday all day and whenever I'm awake of getting into trouble because my mom says something that I'm telling her to be quiet or I'm raising my voice etc.

I don't know if I can deal with this. From what I understand it wouldn't matter if someone else was taking care of her or not for the 164 hours a month either. If the caregiver tells the case manager that she's heard something she didn't like I could be in trouble.

That means that I can't get anyone to come in to take care of my mom and I will have to quit the job taking care of her before we find the right nursing home and will have to settle for whatever we can get. There is no other choice. We just haven't found one we like yet. We haven't been able to find one close to us that has a good enough reputation not to have to worry about my mom all the time being in it.

I don't understand why they have to sneek around to see what's going on. I just hate this so much!!!

Rylee