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I’m the first grandchild (I’ve lived with my grandparents my whole life) and I love them dearly. I’m currently a full time college student who still lives at home partly due to my disability. For the past year or so I’ve basically been a caregiver to my grandfather who has Parkinson’s Thursday through Sunday while my grandmother works out of town. On Monday through Wednesday my grandma and I run errands together and she does more of the care taking when it comes to my grandfather. Very recently my grandfather has been slowing down even more and I honestly believe he is moving into the last stage of Parkinson’s Disease and it’s become more of hands on care needed for him that I know for a fact my grandmother and I cannot handle by ourselves. I feel that 24/7 help might be needed as the stage progresses and my schedule is getting more hectic with school as time goes on and I have to start working soon to save up to move out and also put towards my masters degree. So my real concern is that I need to gather up the courage and right words to start the discussion of bringing a caretaker into the home or getting some sort of plan together to help my grandpa as the PD progresses. My grandparents are against hospitals (ironically my grandmother works at one) and my mom and uncles live an hour or two away (each in a different location) so any help we get from them is super temporary (two days max out of every other month kind of help) I just want to gently nudge everyone towards the discussion because it needs to be discussed. For the year I’ve been doing this I can honestly admit to being frustrated and having a few depressive episodes because 21 year olds are hanging out with friends and being independent, and I do not have that luxury 1) due to my disability and 2) being a part time caregiver who always has to cancel and rearrange plans around my grandpa and his needs. I want what’s best for my grandpa but also what’s best for myself and I fear bringing this up to the family I may be accused of being selfish (my mom and I got into a argument around Christmas for a different reason but she brought up how I always put friends before family which is a complete lie but it’s still haunting me a bit because I have to put myself and my needs and interests first because if I don’t, who will? I don’t want to be a caregiver at 21 years old and I am not selfish for that. I just need some advice, encouraging words, or good energy sent my way because this extremely difficult.

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ChannelLove,

You sound like a very bright and emotionally healthy person. These types of family discussions are always difficult to have. Oftentimes families take the caregiver for granted. Everyone lives their life while the caregiver deals with everything with very little assistance from anyone. But being the main caregiver comes with a super power. If the main caregiver walks away the family will have no choice but to find other arrangements for the elderly person who is being cared for. I'm not suggesting that you just walk away one day but being the caregiver you can choose what you want to do. And since you're not there against your will you can carry out your plans to live your own life and your family will have to deal with it. That's your ace in the hole.

That you live with your grandparents makes it a little more complicated. Because you are there with them everyday it's going to be difficult to step back from the caregiving. What are you wanting to do? Hire caregivers? Will your grandparents pay for that?

What you want and what you need are very reasonable. I think the problem is going to be you living with your grandparents. The attitude you may bump up against is if you live there why is a caregiver necessary? Of course we all understand why it's necessary but your family may not. Nonetheless, start the discussion with your grandmother and your other family. Be clear, concise. Don't plead. Be confident and know that you're entitled to be a 21-year-old college student and that that comes before anything.

Then come back and let us know how the discussion went.
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seems your mother and uncles definitely need to be more involved. approach your grandma first if you are closer to her. share your feelings with her. holding in all your worries to yourself isn't good. make a list of your concerns so you stick to the point without emotions taking over.
Its too bad your mom thinks you're selfish for having your own plans for your life. Why aren't they more involved? why should it be all you? Sorry just my opinion.

Let your grandma know how much you care for her and your grandpa but that you are feeling over whelmed and there needs some sort of change to the situation.
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ChanelLove, yes it is time for your Grandfather to have extra hands in helping him before you and your Grandmother crash and burn from exhaustion. There are caregiving Agencies that Grandmother can call, it all depends on if she can budget for the cost. Where I live, the cost is $30/hour and that can add up quickly. And it depends if your grandparents will allow strangers in the house. Many refuse help.

Otherwise, Grandmother can see if her husband can qualify for Medicaid [which is different from Medicare]. If yes, and depending on what programs your State offers for Medicaid, maybe an Aide can come over to help. But note, the Aide would not be full-time, just a few hours per week.

If more care is needed, then Grandfather will have no choice but to move to a skilled nursing home where Medicaid will pay for room, board and care. I mean, what if something happens to you both, where would Grandfather go but to a nursing home.

If your Grandparents agree that Grandfather needs to be in a skilled facility, do NOT let your Mom or your Uncles talk them out of this, as they aren't the ones doing all the "heavy lifting" regarding your Grandfather's care.
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