At 19 years old, how do I cope caring for grandmother when losing my own happiness?

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WildWildHorses Asked April 2013

At 19 years old, how do I cope caring for grandmother when losing my own happiness?

I'm 19 years old and am currently faced with the difficult position of caring for my Grandmother who was recently diagnosed with cancer. I and my brother (25) both live with my Grandmother - my Dad (her son) lives elsewhere with my step mum and two younger brothers. Things are hard at the moment as my Grandma is receiving chemotherapy and finds it very difficult to move and/or sleep - we have to help her with basic tasks such as going to the toilet/getting dressed and on particularly bad days she is very lucid and confused. My Dad does a lot still, but he is only here for perhaps an hour a day on most days due to his own work and family responsibilities, and so me and my brother are responsible for her care most of the time.

Me and my brother have no experience at all similar to dealing with this and I worry that we just aren't capable of providing the level of care she needs - yes we can help her move, we can clean out the commode and help her dress etc. but there's other considerations - or deal with the responsibility of providing this care. She recently fell out of bed and bust her nose in the middle of a particularly bad night (very lucid, disorientated etc.) and since answering her call for help that night I've found sleeping difficult as I'm so scared by the thought of not hearing her call if she needs help in future and thus her being in a similar situation alone all night.

I know it sounds selfish, and I almost hate myself for feeling this way, but recently I can't help finding myself miserable due to the responsibility of maintaining such a high level of 24/7 care. I work from home so it's often just me around during the day and it's slowly beginning to affect my work (taking 10 minutes out in the middle of a shift to help her is not something I can afford to do constantly) and any break I have is mainly filled with basic care; I'm also going to have to give up my social life from now on because going out and leaving her alone at night just isn't an option with how things are. I know I must sound like a horrible, selfish person - I really do love my Gran so much, and am forever grateful to be living under her roof, but I can't help but let these selfish concerns make me miserable.

Furthermore - I have suffered from depression for the past three years and whilst things have recently gotten better, I'm now struggling to keep happy and avoid sinking back into the low state I fought so hard to get out of (the shock of finding out, the burden of care, being confronted with mortality etc. - all weighing out my mind). I don't see how I can balance looking after myself with looking after my Gran. When I was at my lowest I was told to do whatever it takes to make myself happy, but I don't see my family feeling the same way if I moved out of my Grans or said I couldn't cope with the demands of caring for her right now (of course I would never just leave entirely - I want to help her as much as possible). I just really don't see how to cope in this situation and was hoping for some advice from others who are in a similar position or who have had similar experiences?

A further note (sorry to make this such a long read!) - We have utilised the care available so have a helper who comes briefly in the morning and the evening to help her wash/dress but even with this, the other 23 hours of the day are incredibly hard. For example, just had an incident now where I am the only one here and am unable to get her to the commode as her leg is bad and she can't move (doctor called, has arranged a scan of the leg tomorrow but until then we'll have to cope).

Thank you for any advice you can give :/

Burnout

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score 0 · Answer 1

Obviously you are in over your heads and can't get more help. I don't know how laws are where you live (seems you are in Great Britain judging by your use of "whilst") but if you stay there for two years here in the US and help keep her from being institutionalized she can leave the home on "assistance" and you can't be kicked out of her house, if that's what's on your mind. By the way, "lucid" means she is clear-headed, not the opposite.

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score 0 · Answer 2

God Bless you! Most people your age aren't able to cope with this type of illness in a loved one. You and your brother are wonderful people for helping your grandmother. I don't blame your Dad. He's doing the best he can at this time.

A lot of seniors don't have anyone in their families that are willing to step up when they need the most help. Stay strong! Know that you are not alone! Your Grandmother is blessed to have you and your brother.

Note: If the pressure is too much, it's OK to step away. Seek the best help you can for your Grandmother, feeling confident that her needs are taken care of by professionals. Being a caregiver is not for everyone. Just like being a Neuro-Suregeon isn't for everyone. It's alright to let go a bit and enjoy your Grandmother strictly as a supportive and loving Granddaughter. She'll love you regardless!

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score 0 · Answer 3

WildWildHorses, you sound like a wonderful, bright, caring and very mature person! I too have struggled with depression and remember that "With much knowledge comes much vexation"...:) Seriously, I had to begin caretaking for my dad years before any of my peers have had any similar responsibilities and I can relate to many of your feelings.

I think alot of the advice here is very good. I have found this forum to be a lifesaver.

I would say DO YOUR RESEARCH. Maybe you have already done this, but program key phone numbers into your cell phone, Area Agency on Aging, etc,
doctors, etc. There are times when I simply look at it like a management or research project...and that helps me to realize that caretaking can teach us
valuable, transferable life skills.

Whether you continue to help her or not, give yourself a pat on the back. Some employers also consider caretaking an important additional to a resume. I do
feel that limits should be put on what you are doing...definitely. Do you have
your own support network?? You deserve that!

I feel that this help you are giving will pay off later on in your life in some way.
Set limits, take care of you...and hope your Granny feels better soon:)

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score 1 · Answer 4

Hi there, Please take the time this hospitalization provides to get some sleep yourself and to organize things at home. If your Grandma is on Medicare and is in the hospital for 3 days, she may qualify for rehab. This will provide an additional break for you and your brother. Meet with the social worker at the hospital and at any rehab to be sure they understand the home situation. Ask them to come and assess it. There are mats that can be placed next to the beds in case of falls. I know this is blunt, but your grandma may qualify for hospice. That would provide additional aide and nursing help wherever she resides. Some houses of worship have volunteers that will some and do errands or sit with someone for a while. This may provide some respite for you and your brother. An at home neighbor may be happy to come sit for a while. You really have to think outside the box and draw on EVERY resource. Keep us posted. We're thinking of you .

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score 2 · Answer 5

Thanks so much guys for all the helpful and caring responses - Grandma is actually in hospital right now as it just got too difficult to try and help her move (Dad was up from work straight away etc. no problems there) and is going to have an x-ray on the leg and most likely stay there a few nights. It might sound horrible but this is a huge relief as its the right place for her to be at the moment.

I will speak to my Dad about my concerns more but I hope I haven't given the wrong impression of him - it's just a bit of an unusual family situation and obviously everyone is very tense at the moment. I do think this incident today may help us all cooperate more and realise that we do need to take an equal share of responsibility - I'm particularly keen to stress that my work from home shouldn't be taken any less seriously than the work my Dad and Brother do outside of it (unfortunately I've found this is a fairly common misconception about work from home jobs). I'll be taking all of your advice on board and keep you updated on the situation, so pleased to have found this forum and such genuinely helpful people.

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score 3 · Answer 6

Wildhorses~You are too young to be in this position. It really is your father's responsibility. You should be planning your future, going to college, having a social life. If you absolutely have to caregive for your grandmother, you should be getting paid by her and or your father. You should have weekends off. I would have a little chat with your father. I would put a time limit on how long you are willing to do this. I say this not because you should not love and care for your grandmother but because you are too young to be tied down with these family responsibilities when your father is really the one who should be doing it. Just don't let your family take advantage of you.

I suggest you look into getting a mattress to place on the floor next to your grandmother's bed so if she does fall, she will land on something soft. Also look into getting baby monitors so you will know if grandma is up during the night and needs help. Insist on the helper staying longer during the mornings so you can work, get a break, leave the house for a while. Make a contract with your father so he knows you are serious about this. Keep us posted on what happens and how you are doing.

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score 3 · Answer 7

I have a different take on it. Call your Dad, "her son" and tell him it's HIS responsibility to care for HIS Mother. You and your brother have a life to develop and live. I suppose Dad expects you and brother to take care of him, also, when the time comes? You were not bred to be the family caregiver for multiple generations. Does this make any sense to you?
Sorry if I sound irritated, but I think it is awful that this burden is in you and your brother. It actually hurts me to think of it and I am tearing up over the injustice of it. Just not fair.
If you really WANT to be a caregiver, get certified in CPR and other details and Get Paid to do it. Maybe do this for one more year then you are out of there.
Look to your future, plan your goals, and live. God Bless you. xo

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score 1 · Answer 8

WildWildHorses, I understand what you are going through. I have a home based business with my husband and we care for my 88yr Mother-in-law, (has Parkinson's and dementia) who lives with us. Day to day caregiving tasks can be daunting, especially, when trying to take care of our business's needs. We have an aid that comes twice a week to help her bath and light housework. From the research I have been doing, depending on the diagnoses of the illness(s), there may more options for you, but you will have to do some digging. Also, if you cannot provide the level of care she needs she may need to be in a rehabilitation facility until her health improves. Definitely, you need to discuss these things with her doctor and family. I would suggest that you make time for yourself each week. Hire a elder sitter, (your grandmother's funds could pay for it). I have 2-17yr high school students( with first aid/CPR certificates) that sit for us occassionally, so we can go to a movie, shopping, etc. Work out shifts with your brother and father. You definitely, need to voice your concerns with your brother and father. Don't feel bad that you can't do it all. Remember, you must take care of yourself FIRST, to be able to care for your Granmother. I know it is easier to say than actual do. Been there. Once I learned, I needed my time for me and started doing it, I and our family became much happier.

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score 1 · Answer 9

First and foremost, I think it's wonderful that you and your brother are providing care. There's so much I would like to touch on, you have a lot going on. I think in order to give, it would serve everyone well if you are at your best, easier said than done, I know it, but your mental health is so needed for your energy, focus and coping. I work from home too so everything's on me most hours of the day. You are not "selfish" and there's no reason to be so hard on yourself. You are doing a great job, I'm sure of it. The only advice I can give is to not turn down help, try and come up with a schedule as best as you can between your dad, brother and the helper, so that way at least you know when your "time off" is. If you can step away for even an hour or two, even if it's not everyday, at least you can go meet some friends or do what you would if your social life was more active right now. When you have a free moment at home just step outside and get some fresh air, do what makes you feel refreshed. One day at a time .......

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At 19 years old, how do I cope caring for grandmother when losing my own happiness?

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