I will try to put this in a nutshell and not get too lengthy but I really need some feedback. As most of you know my twenty something granddaughter came to live with me shortly after Charlie went into the nursing home in 2009. She lived here almost a year and then tried to go it on her own. She lost her job and came back to my home a couple of weeks after Charlie died in December. She recently got a new job that had the potential to eventually make her self-supporting. I stressed to her that this was a good thing as I want to retire by the end of the year if not before. Last week she was diagnosed with a medical disorder that could be fatal but should not be if she gets proper treatment. But, isn't there always a but. The treatment will take 6 months to a year. It is a 90 minute round trip once a week and the treatments will incapacitate her to the point that she will not be able to work. I am willing to offer emotional support and whatever financial support I can afford but i do not want to be responsible for her. I am still trying to recover from the years of taking care of Charlie and I just don't think I can do it again right now. I what to think about me for a change. I am willing to be the helper but not the caregiver. My family will probably think I am a horrible person for this. Am I wrong to feel this way?
What about her parents? Can't they take her care of her? You cannot take on this responsibility; you've done enough with your husband - just my opinion.
I agree. Everyone should accept the fact that you've done your share of caregiving and are not up emotionally up to handle caring for yet another person.
I totally agree!! You need to concentrate on taking care of yourself. Even though I understand why you want to do it, my vote is no you shouldn't. But...I just wondered what I would do if it was my grandchild...my inclination is still no! Family should understand that.
I would also be interested in knowing in addition to not being able to work, how debilitating is the condition? Will she be bedridden at home, sick all the time...You need to know exactly what this all is about.
Being willing to have her come back in Dec was one thing, it is nice to have someone in the house for company as long as they are part taking in expenses and housework etc, not just being a consumer. But now that your granddaughter has an affliction and so soon after all the hell you have been through, the question is more than reasonable..what about her parents or siblings or other family members? There has to be someone else able to shoulder more of this. If you are drawn into this, you are going to face many of the same issues you have just been through and I would question if your own health could withstand this, the emotional factors that you will face not to mention financial..how is her care going to be provided and who is going to pay for it, does she have health ins?
No you are not a boogyman ( woman) to say no, I have been through hell and back and I am spent out. Unless there are many serious questions answered, you are not obligated to do more than that which you can COMFORTABLY do. If it means taking a turn with someone else getting her to treatment once a month maybe that could work..but if it means you are the full time caregiver...I would have to draw the line there and get others involved in helping this poor young woman get the help and support she needs.
When I became a life guard, back in my college years, one thing was stressed.. if a shepard's hook or life circle is not available and if you know you cannot safely enter the water to rescue a victim, you are not obligated to enter the water and risk your own life to save that person...The same rule of thumb applies...if you know you cannot do this, if the support is not there from family then there must be other resources that can step in and help so you do not face this alone all over again and so darn soon.
She's old enough to understand. Just tell her that after taking care of Charlie for so long, your just not up to being a caregiver again. You'll end up sick if you keep taking on things.
Thanks for the input. The grandmother in me wants to do all I can. I would change places with her if I could but the caregiver in me says run for the hills. Her father died when she was 6. She has a loving mother, 4 siblings, two aunts, several cousins and great aunts and uncles who love her. It is simply a matter mostly of geography. I had tons of emotional support during my journey with Charlie, but due to distance, (all the kids live at least an hour away) jobs, children etc. physical help was not an option. I am the only one who has room for her and I do not mind sharing my home with her, but I know that just as when Charlie was ill most of the work will fall to me. I want to move to town but I planned to move to a senior complex where she will not be allowed. I can't afford to rent a place big enough for both of us and foot all the expenses. Oh well, I didn't plan to retire until the end of the year. Maybe her treatment will be over, maybe the PCP over reacted and she won't need treatment (we don't see the specialist until May 2) or maybe a miracle will happen. One day at a time. If I didn't learn anything else in may journey with Charlie, I learned that.
Oh ehamilton I am so very sorry. I know how I would feel if I were faced with knowing that I would be required to caregive once more after this journey with my DH ends. I on the other hand am always the odd ball on this forum and my heart goes out to the grandaughter, to be sick and possibly terminal would be so horrible and at that young age, to just know there is someone who cares enough to be there for her is the most important thing in the world. At a time of illness I would have to put myself in her place and think how I would feel. We play the cards we are dealt, and in my case I would have to thank God that he has allowed me to be the caregiver and not the one who needs a caregiver.
There now, I know others as always feel that I am the odd one, always have been but those are my feelings.
Jane, being "normal" is very over rated, I find I like "odd" much better :D
I am also on the odd end of the scale. My Uncle is dying. Cancer. He was in the same nursing home as Lynn so I would stop in and visit with him every day. My family was shocked I could/would do that. Thing is, I love my Uncle! He is my Dad's brother and he reminds me soooo much of Dad!!! AND I know what it is like to have to be placed in a nursing home, and no one comes to visit! I was damned if I was going to be "one of those people" My poor Aunt, her health is failing quickly, and hospice believes she will pass before him.... my Uncle came home 3 weeks ago, so they can die together........... it breaks my heart!!!
I volunteered to help my cousin with their care. People look at me like I am a masochist. I am nothing of the sort! It hurts like hell, but I also know what it is like to try to be the sole caregiver when you yourself are falling apart. It is too much for anyone! So with some fear that I just can't do this, I put on my big girl panties and just do it! Never dreamed I would be cleaning my Aunt and Uncles bums!! But, in love, one can do just about anything. Though it hurts, I can make their final days one of comfort and dignity. I consider it an honor. The time we are sharing now, I will remember always.
((Edis)) no one here will judge you whatever you decide. I think you have the right attitude, wait and see what the specialist has to say. There is no doubt how much you love your granddaughter. Whatever you decide, she KNOWS this ♥ The best advice I have ever been given ((Nora)) was to follow my heart. There is never a clear cut right or wrong answer. We each do the best that we can, and only we know when we have reached our limits. One day at a time.... ((big hugs))
ehamilton, it sounds like you have a few weeks to check things out. She doesn't see the specialist until May 2. Between now and then you can heklp her research all you can about the Dx , the treatment, any Assn support, hospital support services, Social Services support she may qualify for, etc. Then put out a blanket list of chores you know will be needed asking all relatives to choose what they can commit to doing for the duration. Even a 2 hour drive (to fill an e-mailed in-advance grocery list) isn't that much if only once a week or twice a month. Make it clear that YOU have commitments of your own to honor and can't do it all for her.(If needed have a list you can spout--appartment hunting, healthcare of your own, etc) Having already been a Caregiver, you'll know what things can be farmed out. Be clear with your Granddaughter, the rest of the family, and the medical resources that all help possible will be required to make it worK. Once you have a clear picture from the specialist of what he foresees for her treatment, and what others will commit to, you all will know how to bring it together, with no one shouldering all the care. Even now, as I said, you can help her research this, even if all you do is help her stay on it and help organize the information. It's not out of line in any way to just say no , esapecially if it will all fall on you, but I sense that you would like to help. Helping sort this out would, I think, help her, help your extended family expand their caregiving abilities, and allow you to be gthere for her ON YOUR TERMS.
I agree with carosi. We used to drive 3 hours to help my aunt and uncle when he had AD. Relatives who are an hour drive away should be able to pitch in to help out too. I would enlist their help just as suggested..You will have to be organized and firm with what will be needed once you have a very clear picture of the illness and treatments. Take care of yourself too...this is not a selfish thing to do..if you don't you won't be able to help your dear granddaughter as you would like..if you become overwhelmed and ill the rest of the clan will have not choice but to help and then the stresses and worries for all will be multiplied. Enlist their help too. It sounds like you have a wonderful family and if asked I bet they will be more than willing to help you and your granddaughter...It will bring them all closer together doing such a wonderful thing for her..You are right, there could be a miracle there but not one that we would normally hope for and expect.. Blessings on all of you.