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My grandmother is 95 years old. While she can pass away any day, her health is such that unless something drastic happens (fall, etc.) she will not be going anywhere for a while. I want to remain with her until she passes, because that is her wish. She does not want to go to a nursing home, or even a hospital. She wants to remain at home until the end.

I am concerned about some things:
1) Career: I have no job skills that can help me re-enter the job force when my responsibilities change. I studied viola performance in college, and am a good violin teacher. But there is no demand for this skill, so I have to get reeducated. I am already 26, and I am concerned about ageism in the work field. I do not want to go into care taking as a career. I regret going into a profession that does not earn money, and I only have a small window of youth left to really pursue "what I want."

2) Exercise: The past 3 weeks, I have been leaving grandma alone for about 3 hours, 6 days a week to exercise at a local gym. I gained 90 lbs in the last 3 years, and I need to get healthy and lose weight. I am able to go and leave her alone at the moment, but I know there will be a time that grandma can't be left alone. Recently her back has been getting weak, so she needs someone to walk behind her and hold her back to ambulate. Lifting her off the toilet, etc.

3) Church: I go to church 4x a week, and I would like to continue doing this because this is the most important part of my life. Again, she is left alone when my mom drives me. There may come a point when she can't be left alone.

I guess a lot of these concerns are "what ifs" but they are bothering me. I have squandered a lot of my youth even before being a caretaker, because I made poor decisions and had psychological problems. I'm on disability (though I don't feel "disabled.") I'm very motivated. I am finally getting my life together, becoming Christian and going to church to be with godly people, and this challenge comes up. I guess it's God's will for me to be a caretaker. But the dreams I had once to be a career woman, an independent person who could support myself with a career I love, I feel like these dreams are gone. I guess reality sets in.

Thanks,
Neesa

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It went ok. She told us that we will be eligible for home nursing care through medicaid on May 1st. We are taking grandma home this morning (Tuesday) so we will be on our own until then. We definitely are going to try to hire someone privately right away though.
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Neesa, try pushing further w/hospital (if Grandma isn't home yet). My husband's aunt was in the hospital in December for the minimum 3 days. She then spent 5 weeks in rehab. All she had was a UTI and a related fall. I don't know, maybe it's the fall that helped qualify but generally, the fact that the seniors are in bed for several days qualify them to get rehab. Good luck
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How did the visit with the lawyer go?
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The hospital has staunchly refused rehab. Period. They don't want to give it because she didn't have a stroke or broken hip, she just had a UTI. Which doesn't require rehab. So that's it; they're washing their hands of her. It's completely preposterous.

My grandma EXPECTS 24/7 care. She expected it even before going to the hospital, and we were really at our end. My mom visited the hospital today and she said that Grandma was 1/2 way back to her old belligerent self. Probably because she feels stronger and less weak. (She was nice when she was weaker.) Grandma expects us to care for her 24/7. It was frustrating before because she would always want to manage everything we did, and "help" us with the garbage, etc. Then she'll want to go through her papers that she can't read, and she's constantly asking "What's that? What's that? Put that there." and then the next week she tells us to put the stuff back where it was before. If she is bed ridden this will be easier, but I think she will start to be belligerent again. We'll see how she is at home, but if we can't take it, we'll have to spend her life savings in nursing care. There it goes. What a stupid woman.

If I am caregiving for Grandma, I don't want her to pay me. It doesn't feel right; I am her granddaughter and I love her and will do it for free.
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It seems like the hospital should at least give GM the chance to go to rehab and see if she can improve strength wise. I'd push for that. When my dad was in rehab, they did much more for him when they knew I would be bringing him home. He improved quite a bit. His swallowing improved quite a bit too. They would not have done the extra if he was going to be a resident. If they understand that you want to continue to care for her at home, they bust their butt to make headway, and Medicare approves that because it's a cost savings to them to have an elderly person return home.

Jeanne has a point too. Your GM might enjoy 24/7 care. It's hard for you and your mom. Try the rehab and make it clear you are bringing her home, but need her to be as strong as possible. If she can't do it, then that's another story.

You need to get to the gym and carry on with your life. Your idea of teaching English is fantastic. Wow and you speak German too. Girl you rock!!!!

Yes, the need for escape and a little rage can be a motivator for exercise, but it's good for your brain, mental health, etc. regardless. Love Ya, Cattails.
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Thanks for the update! An elder law attorney is a good source of information. That should really help.

If you are bringing grandmother home in order to save money you can inherit, be sure that you know the contents of her will and who else will be sharing this money you are working so hard to protect. The lawyer may suggest GM pay you for caregiving as you go rather than waiting for her to die.

If GM has gotten to like the kind of care available when there is a 24/7 staff of professionals, perhaps she really would prefer a nursing home. Would that be OK with you and Mom?
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Here's an update:

Grandma has been in the hospital since Wednesday. Today is Monday. Since Friday they have been trying to kick her out because she is "better" from the UTI. However now she is too weak to get out of bed, and she herself doesn't know if she should go back home. This is coming from the same grandma who VIOLENTLY hated the hospital. Now she thinks they're taking good care of her. She needs someone to change her diaper at least every 2 hours, and also feed her (although she can eat some foods on her own like sandwiches or easy-to-see food on the plate). We are concerned because my mom cannot lift her to change her diaper. Also we would need to hire someone to help us out at least part of the day. We have a woman in mind who can come at least on weekdays from 1-8, but we don't know if she does personal care. Also of course Grandma needs to be sponge-bathed, hair washed, all that stuff.

We are also concerned because if we agree to put grandma in a nursing home, the government is going to take all her money that she saved her whole life. The matter was not dealt with when we had the opportunity, so now we have all this money showing. So even though grandma is willing to go to a nursing home, we most likely will take her back home anyway.

I am enjoying the break now, but because I am unsure if she will return home, I have been sort of in "limbo." If I knew she wasn't coming back, I would organize my "new life." But right now I am just feeling very unproductive and stagnant again. I am actually missing having a routine in caring for her. Also I am not motivated to go to the gym again. It was very easy to go before because I had all this pent up stress to let off from caretaking, but now I am just relaxing so there is no "rage." Funny how that works. I am still eating well though, probably around 1500-1600 calories a day with no snacks except for 2 100 calorie power shakes. Fingers crossed. It will be a super blessing if she returns home, because then I will want to work out again or something.

A friend of mine at church offered to give me a hospital bed for our house if she returns home. Our insurance is not providing one, so if she needs on we have one for free.

Also people have talked about rehab and after-care plan. The hospital gave her none. They have been really unprofessional in this whole process. When we were told of her discharge, 2 social workers called us and said stuff like "Well she's been like this for a long time." (she hasn't) and "She's 97, what do you expect?" (She's 95, and that is not the attitude they should have.) They told us nothing about our options. Then we talked to a 3rd woman, and she told us some things that were more helpful, like "talk to an elder care lawyer." So today (right now) my mom is meeting with an elder care lawyer. We'll see what the result of that is. But regarding what I know right now, it seems like Grandma will come home.

In terms of "career" that is on hold, I have this idea that I want to teach English. I live in NYC so there is high demand. I could get a TESOL certificate and then teach English. Also I can get more violin students when my schedule frees up. Right now I found a German tutor online so I can improve my German while I'm at home. (I speak German fairly well.) I'm trying to figure out Spanish lessons as well. I hope this works out.
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Neesa, thanks for bringing us up to date. Sorry about the UTI but it may be responsible for MANY issues. After the admission, etc your GM will likely settle in and you can get away during her naps or tests, etc. Presumably, she will be offered the opportunity to go to rehab (standard after a 3 day hospitalization). Consider this too as it may help strengthen your GM. (Also, it gives you a break). You can start to look into rehab centers now as it is the family's decision not the hospital's as to which rehab she goes to. Last summer, the hospital wanted to send my Mom to the rehab in her continuing care community. Its reputation wasn't all that great. So we chose another one geographically closer to my brother and myself. This made for easier visits and their reputation was better.

How is your new eating plan working out? Don't let the hospital stay get you off of your objective. We're all pulling for you.
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Nessa: I so agree with Jeanne. Be open and engaged and the world will find you. As for your GM, I so understand what you mean about a different kind of stress. I went through it with my mom on many occasions during hospitalizations, cancer diagnosis, surgeries, etc. and I've been through it with my dad too.

I'm going to advise you to get some rest and go to the gym. Keep something of your routine in your life. It's very difficult when you feel that the person in the hospital can't eat on their own. Your GM probably doesn't eat a lot to begin with so make it a point to help her with at least one meal and ask the hospital to provide a supplemental shake (calories and vitamins) to go with that meal. That will help her and help you too. You hang in there sweetheart. Cattails.
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Neesa, I want to comment on your career fears. Don't worry about being "too old" to start a new career. I say this not because employers are benevolent and want to give older folks a chance, but because it is in their self-interest and they know it. Assume you'll start at or near the entry level. If you were the employer, would you rather pay that entry level salary to a wet-behind-the-ears graduate or to someone with a little maturity, a little experience with being reliable, conscientous, and serious about achieving a goal? Once you are hired, your advancement depends on your contributions, not on your age.

It is amazing how often people in our culture change not just jobs but careers. The dentist who becomes an art dealer, and the biochemist who becomes a park ranger are alive and well. People start new careers at any age. You'll fit right in.

When I started my third career, I discovered it through a course designed for women entering or re-entering the workforce after an absence. I highly recommend seeking such an experience, when the time comes. For now I'm just trying to reassure you that your age will not be an obstacle to leading a fulfilling and productive work life. There are plenty of other things to worry about. You can cross that one off your list.
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Thank you for the update. Hang in there!
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Thanks for the encouraging words from everyone. Here's an update:

Right now I am sitting in the hospital with my grandma. She was admitted today for a UTI, and they want to monitor her while the antibiotics kick in. She will be here about 3 days. She is really freaking out, because she hates the hospital. She was yelling in the stretcher as they were wheeling her in the hallway. The hospital is excellent, they are caring for her very well, and are very patient. I am staying with her all night tonight, and will probably leave in the morning to go to the gym. (Maybe I will go home to sleep before if I am tired.) I thought her going to the hospital would be less stressful, but it is just a new type of stress. I shouldn't say stressful because it is not like I am tearing my hair out, but the responsibility is not entirely off my shoulders. For example I am still accompanying her to the bathroom sometimes, with the nurse. Also I need to help her eat because she really cannot eat without help. Just poking the food with a fork is hard for her, she is weak. She also asks a lot of questions about what she is eating, I guess because she can't see well.

I didn't go to the gym today because of this family emergency, but I will be going tomorrow again.
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Neesa, you're doing so much good for your family and for yourself! I saw that you were waiting for your Mom to come with a Plan B. I know your mother loves you and her own mother, and wants the best for you. At the same time, sometimes it can be hard for people NOT in the direct caregiving role to delay a "Plan B" simply because Plan A works so well for themselves: "Neesa has it covered. Mom is safe."
Maybe suggest that you want a Plan B for something catastrophic, like a fall, or an illness -- you want a plan in place NOW to deal with that, so it's not having to be researched and implemented on the fly, in the middle of a crisis. That might get Mom thinking about an alternative plan. And through the lens of the next stage of Grandmother's slip into less functionality, she may be able to see more reality now.
Finally, I meet so many caregivers in a support group I am part of, who see their children as an extension of themselves. They send their own children to live with Grandpa because the "kids" -- in their twenties -- don't have a full career to manage at the moment. It feels to them like the family is doing the car taking. But the onus for things is on the third generation -- and the productive loss of time to build a career and new family is in the third generation.
It makes sense why this happens....AND it's woken me up to the need to keep my own daughter out of the fray entirely. The time with your grandmother sounds like its even you a cushion to adopt a healthier lifestyle, and lean into a supportive new community, and you are starting to take on music students. That's all great -- AND you've accomplished that while caregiving! You are taking all the right steps to build your life. As you help your Mom recognize the need for a Plan B, and as you both step closer to the fact that Grandma will HAVE to be disappointed that her living situation is no longer going to be independent of help she doesn't prefer -- you'll be taking huge steps to the next part of your life. You are doing more than you realize!
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Neesa, I too had that issue. I still live with my 94 year old mother so she could stay at home and not have to be put in the nursing home in her last days. I felt like I was reading my own story except I am 63. At 63 there is NO hope at finding a job when mom passes on so I took matters into my own hands and you CAN TOO. If you can contact me I will share with you what I have done to start building myself a foundation so I don't wake up one morning surprised that this chapter in the book is closed and another one started without preparation. I have cried myself to sleep many a night wondering what I was going to do BUT thank God I don't have to any longer. I know I am on the right path. This has not been an easy journey caring for my aging mother but I know now why I was put here with her. Get a hold of me if you like. DO NOT give up. There is a light at the end of the l o n g tunnel so to speak. I thank God everyday that He showed me what I was to do when this journey is over and another one starts. I am confident now and I can focus on mom instead of what my future "would not be". I hope this gives you a little hope. Contact me.
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Neesa: Thanks for explaining in detail. It does sound like you and your mom have a plan. Maybe your grandmother would benefit from medication to address anxiety and compulsive behavior. I don't have a lot of experience with dementia, but many on this site do and I'm sure they will share their knowledge with you. It would be good to have her evaluated by an expert in field. Stay in touch and hang in there. Get to the gym. Love, Cattails
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Sorry I meant read the bible with "her."
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I received "What Color is Your Parachute?" yesterday at church, and read a bit of it. The career assessment section is SO comprehensive, I felt really overwhelmed! Especially because Saturday was a rough day taking care of Grandma.

We think she has symptoms of dementia. She recently had a CT scan (6-8 weeks ago) which came up normal. However, her behavior can be really frustrating. She has this intense fear of water, and so she's always in the bathroom dabbing herself for at least a 1/2 hour, sometimes over an hour. She is incontinent so she is always afraid that she is wet. She also has to know where everything is, so she is constantly asking us, "What's in that bag? What's next to me?" She cannot see very well because of macular degeneration, and she has very poor hearing as well, so we are always shouting at her. Saturday was really tough. She went to the bathroom about 8 times, each time was about 45 minutes of assistance and she was completely irrational and obsessive. We were really tired and also concerned that she is degenerating. I didn't get to go to the gym on Saturday, and I really felt the effects of this on Sunday; I felt like I wanted to punch a wall or something. I will go again today (Monday).

Cattails: I think that you are right in terms of trying to get help to have her stay home as long as possible. However, we have already had home health attendants come over from city agencies, and she is always very dissatisfied with their work. The workers are limited in what they can do (they cannot do heavy cleaning of stoves, etc.) and also they unfortunately tend to be lazy. This means that they need to be managed and told what to do. My grandmother cannot do this, so sometimes when I come home I see my grandmother watching Oprah with the attendant. (Grandma doesn't normally watch TV.) It is not useful. We have definitely decided that if we need outside help, we will hire an attendant privately. We are concerned, however, that an attendant will struggle with my grandmother. She is very difficult, and she exhausts us at times. A woman at my church has connections to people that would be willing to be an attendant for her, so when the time comes I can ask her for some names.

My grandma owns the co-op that we live in. However, her social security payments are just above the amount that qualifies for full medicaid. I think she has medicare though. Her income pays the maintenance fee for our co-op. She has some money in the bank (low 6 figure amount), which she has refused to transfer to my mother's name until very recently. Recently however, she went to the bank with my mother, and she made a joint account with my mother. We are concerned that if my grandmother needs care, the government will take her money before providing the services for free. I have religious objections to what my mother is doing with the money right now (withdrawing it), but I know it is her responsibility and her decision. At the same time it was very unwise for my grandmother to hold on to the money as long as she did. It is a difficult situation, but not my responsibility so I am not worrying about it too much.

My mother seems to be slow in thinking of a Plan B. I have ideas for Plan B, but ultimately my mother is the authority on what Plan B is. I guess right now, my mother is going to call grandma's doctor and tell him about what is going on. He will give us advice and tell us what to do. If grandma's behavior gets worse, we will call 911 and have her tested at a hospital. Then we will probably decide to get a home attendant, unless she is really needing a nursing home. But this is very undesirable. I think that plan of action really covers Plan A and B. The first step is talking to her doctor. He is very interested in her because he has been seeing her for 12 years. We see him fairly often (every month) so he cares. I even talked to him about my desire to read the bible with him, and he gave me some good advice in caring for her. (He is orthodox Jewish.)

I got 2 more violin students yesterday at church, with another who is interested. I'm glad that my music teaching is expanding. But I still would like to find another career I'm interested in. I can read the parachute book when I have a little more energy.
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Neesa: You are a wonderful person and I so admire you. Great job with going to the gym and changing your eating habits. Good for you!!! That will really help you keep a clear mind and stay motivated. You are seriously thinking about your future and you have plenty of time to find your way so don't get down on yourself regarding the past and just keep taking those forward steps.

I understand that your grandmother is a private person and doesn't want people in her home. Nevertheless, I'd like to suggest that you also give some thought to what you will do when she can no longer be left alone. When that day comes, you need to have a plan in place that will allow you to still go to the gym, church and continue with your violin lessons. It will be important that you keep as much normalcy in your life as possible and not become house bound 24/7.

I'd like to suggest that you call your local State Social Services Department. Explain your situation and that you are looking for answers to get in home care for your grandmother at some time in the future. Ask them if they have a number for a local Area on Aging office. Start the ball rolling to get as much information as you can get.

At some point, something is going to happen to your GM. I'd like to see you have the support you need when that time comes. If you could have a trained care taker come in and stay with her during those hours that you have your activities, it would be the best thing for both of you. You can still be there to take care of your GM all the other hours of the day and night, but it's just as important that you have some hours for your life too.

There are many resources out there to assist the elderly in staying in their homes. You should become familiar with them so you are prepared to get assistance. You don't have to do it when the time comes, but you should know the options and have a plan B in place.

Based on your GM's income, she may qualify for Medicaid. Does your GM own her home? How long have you been living with her? What is her income?

These are important questions, if you can get back to us and answer them, I can give you some more suggestions.

Take care and keep going to the gym. God Bless You. Cattails.
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Neesa, you are doing a great job and making progress quickly. Terrific news. It sounds like the new eating habits and exercise are helping you to feel better already.

I am familiar with the book and it should be a big help to you. Keep us posted and encourage feedback along your road to success.
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Geewiz, a couple at my church are bring me a copy of "What Color is Your Parachute?" tomorrow. It is a book that helps you decide what career you want to pursue. I think deciding that is the first step. The online course idea is really good too, because I can start to prepare myself while I am still care taking.

I actually don't read that much except for the Bible, 3 or so chapters a day. I am motivated to read Job these days, because he went through a lot of failures. I have a lot of christian commentary books though, that I amassed over Christmas when I joined paperbackswap.com. (Hence the name "bookwormneesa.") So I have plenty to read.

I teach violin already to 7 kids every week. 2 are at church, the rest are driving distance. I don't drive, my mother drives me. (This is on the weekends when she is not working.) We leave my grandmother alone when I go teach. It brings extra income into the family, which is good. Right now we can leave her alone. I don't know what will happen if we can't leave eventually. But I am not there yet. People can't come to the house because Grandma doesn't want anyone to come over and see her. She is a very private person.

I am going to keep going to the gym as long as I can. In the last 2 weeks since I was working out I lost 8 lbs and about 8 inches. I have also modified my diet to a 1500 calorie diet, so even if I can't go to the gym anymore I will continue to eat better. I was eating garbage before, but now I feel so much better. I don't even miss the garbage anymore. I am treating myself to sashimi tonight because I have had diet food for the past 2 weeks. It's not really diet food, just not junk food. No desserts. Which is fine. There is plenty of healthy food that is fun to eat. :)
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Neesa, your Grandmother is so blessed by your presence in her life. You are a kind and loving person who cares so much. I admire all that you are doing at such a young age. You said you are getting your life together and sounds like you are extremely motivated. At the age of 95; anything can happen to your grandmother. Sounds as if you are the only one taking care of her and your mother works? You are a truly wonderful grandaughter; but most likely and sounds like soon - you won't be able to leave her alone. I know you want to be with her to the end; but sometimes that is not possible.

Let go of the past. We all make mistakes; what is important is that we learn from them. If you believe it is God's will for you to be a caretaker; I understand, but keep in mind you have a life to live as well and deserve it. We can't always keep our promises. Your dreams for the future are never gone! You don't realize how young you are.

Have you ever seen the movie "Music of the Heart" starring Meryl Streep? If not, I highly recommend it - it is a true story about a violin teacher and think you will enjoy it. It's an older movie - but you could probably find it on-line. Blessings to you and keep dreaming big dreams; this movie will really give you even more motivation. Take care.
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Dear Neesa

Your whole life is ahead of you, embrace this time with your Grandmother and consider all of the free time it allows for you to develop yourself for new opportunities.

Some things to ponder:

* Your "bookworm" ideas hints at you being an avid reader. Hit the library and get a book on the top future career growth areas. Consider some of these for yourself. Then read about things in that field.
* There are loads of on-line courses to help you develop new skills
* Can you ask your pastor if there is anyone in your church group that might spend a little time with your Grandmother to give you additional free time?
* Can you teach the violin at home or church whether it is volunteer or paid? You must love music and it will give you some pleasure.
* Keep going to the gym and if that takes too much time get out and walk. It helps relieve the stress, gives you time to think and helps keep the pounds off. It's easy to pile them on when you are care giving, I know!!
Good luck
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