I'm feeling really anxious

[BethHorne]

After taking care of my grandmother for about six months, we had to have her rushed to the hospital with anemia, and almost lost her. While she was there, she had a bedsore that I'd been fighting debreeded, and we learned that it had tunneled and so now she's been in the hospital for about two months. I'm expecting her to come back home in a few more weeks, and I'm really nervous about taking care of her again. She is very hard to deal with, even the nurses at the Extended Care Unit have just thrown their hands up in trying to deal with her on some days, and they've told me time and again they don't see how I handle her by myself. We get along well, but I'm worried about going back into the old routine, you know the one, where I have no life, I worry all the time, I get up to turn her and have no sleep any more, I live to serve again. I love her so much, and I want to do the right thing, but after two months alone, I guess I'm spoiled. I miss her, but I don't miss being yelled at all the time, or having to constantly change diapers because she refuses some days to use the potty chair. I don't mind giving baths, or doing for her, but she's so difficult and cruel sometimes, and I have no one to give me a break...everyone just thinks, Oh, Beth can do it all. And I'm just not looking forward to going back to that life again. Am I just a mean selfish person, or what???I mean, it wouldn't be so damn bad if someone would give me a day off here and there, but now their saying that I'm not even going to be able to continue going to practice with my band anymore, and that was only for a few hours once a week. No one in my family will help, they all say they're too busy, that they have lives, and understand, my family all lives near her.
So I'm left just holding the bag. And this just sucks sometimes. If I didn't love my grandmother so much and not want her in a nursing home, I'd just mutiny and leave. I guess I am just a bitch.
Beth

 

[Jude]

Dear Beth,

Your post sounds exactly like some of the conversations that I have had with myself on zillions of occasions. And for some irrational reason, we go right on beating ourselves up over wanting to have just a little bit of a life for ourselves. Selfish it aint...!

Both my parents have AD and I have kept them out of a Nursing Home for the past six years. I've been share-caring with 6 months on and 6 months off. 6 months 24/7 was just as much as I could mentally handle with no family backup either. Living in a rural environment also meant almost total isolation and zero outside conversation - except for TP as my lifeline.

I got back home recently to find my parents in a totally appalling state, as the 'carers' had done anything but that. Won't go into details, but suffice to say the situation was truly horrifying.

The end result was that I just cracked up completely and thought 'I just cannot DO this any more'. [Please insert your post here, Beth]. All of your thoughts were mine too. I felt like an utter failure to have to make the decision to bail out. Taking them to the Home was probably one of the worst days of my life, but more in trepidation than reality as it turned out.

My parents have been in a lovely Nursing Home now for almost 3 weeks. They have a twin room which miraculously was on offer and they are relaxed and happy. Instead of the daily grind, I now can visit and we have coffee, go for walks or out to lunch. I'm also almost relaxed and happy too.......

The relief is enormous and I no longer feel guilty or stressed to the max because I know that they are in a safe and caring environment and enjoying themselves.

It's a terrible step to have to take, but do consider it for your own sake. You sound like YOU just can't DO it any longer either, Beth.

Kindest regards,

Jude

 

[Canadian Joanne]

Your grandmother

Dear Beth,
If the nurses are telling you over and over they don't see how you can take care of her at home, I think you should take this as the sign that your grandmother should be moved to a nursing home when she's ready to leave the hospital.

You do deserve a life and I'm sure that your grandmother, when she was well, would not have wanted you to sacrifice yourself for her. In a home, you can do all the more pleasant things, chat, walk, listen to music, whatever it is, whilst the staff take care of the bathing, dressing etc.

As to the practicalities, who has power of attorney? Does the family agree on her going to a home? Might be tricky there but stick to your guns and get her admitted. Tell them the only other option is that someone else in the family take care of her. You've fought the good fight long enough now. Your part should be done.

Keep us posted.

Joanne

 

[BethHorne]

Thanks for your support. My Mom has POA and I'm second on medical. No one in the family wants her in a NH, and I wouldn't mind having her at home if I could get some HELP!!!! Like a home health nurse in here to give me a break once in a while, or someone to come in at night. It just drives me crazy that no one seems to think I need any help, nor do they want to help me themselves. My mom lives 25 minutes away, and won't help other than a short visit or two here and there. The other relatives just don't even hardly visit or call at all, due to the fact that my grandmother is, well, kind of a bitch to most people. But she's funny, and a lot of fun to be around sometimes too.
But I just know that it's going to be the same old grind when she comes home. I am thinking very seriously about putting my foot down and demanding an aide at least a few days a week, especially since she can't be left alone at all now.
Thanks for listening,
Beth

 

[Jude]

Hi Beth,

It's all very well for the rest of your family to say that they don't want Granny to go into a NH and then leave you to carry the burden and do absolutely nothing to help out. Hardly fair is it? I've been there, done that.......

Since you've got a few weeks until she comes home, perhaps you could spend some time in laying down some ground rules with your family. If they really can't or won't help you, then you AND they could investigate some care options.

You could also just pull the pin if your family don't respond and say 'OK, I've done my bit, over to you guys. It's time for you to sort it out, gang'. See what happens when you dig your heels in.

I think you are going to have to be very firm about setting some new rules. Give it a go. Try not to let them walk all over you. Start a small fire and stand well back.

Best wishes,

Jude

 

[Sheila]

Hi Beth, now hang about a minute here, this is your Nan right, your Mum has POA. Listen, this is not your problem my love! OK, you love your Nan, thats how it should be, but to say that you are the only one in your family who should now have to take care of her, no way! You need to put your foot down with a firm hand. I know you love her, you have the wonderful capacity to see beyond the dementia to the lady within, the one who is your Nan. That's great, but that doesn't mean it gives the rest of your family permission to carry on their own lives regardless, leaving you to care for a family member with an illness that is never going to get better now does it? I am sorry if I am sounding a bit strong here, but believe me, I am in your corner. If you are finding it hard now, then it is time to set things in motion to lighten your load because it ain't gonna get any easier! For a start, it sounds like your Nan now needs 24/7 care, this is a task that even the staunchest of carers find difficult to cope with. You sound quite young, am I right? You have a right to go out and see your friends, do the things young people do, and, HAVE A LIFE OF YOUR OWN, no one should be allowed to make you feel guilty or differently, that is very wrong of them in my book. The hospital staff are, by their own words, recomending a nursing home. Quite honestly, I think it is time you said to your family, hey, I have done my bit, now you do yours. See who steps into the breach then. Give an ultimatum, you cannot look after your Nan when she comes home, you do not feel able to handle it. Ask them who is willing to do the next stint. If no one is willing, ask them what they suggest, (don't let them get you with the guilt bit here, you have done more than any of them) they will no doubt find the nursing home a very viable option then. If they don't, (God forbid), Insist that a rota is drawn up to include all family members who wish for her to stay at home. You can include yourself if you like, but be careful, they will start to put on you pretty quick again I fear! Then, ask SS to fill in the gaps, if they can't, then family members must do more, don't forget that this includes 7 nights a week too. This agreement must be adhered to, if it is not, then a home must be found. (If I were you, I would do my home work now and find a good one that you are happpy with and get your Nan's name on the waiting list. That way, there will hopefully not be much of a time lapse when they all start to default on the agreement. You may find that your Mum has to OK this as she is the one with the POA, at least this will illustrate to her just how exhausted you are becoming and that you cannot carry on coping as you were.) I know this sounds daunting, if you can't face them, get them to read your posts, then look you in the eye and say why they think you should carry on with her care alone without any help from the rest of the family. It just is not on my love, your Mum (and any other children your Nan had) is/are the next of kin, they should be the ones sorting this out, not you. You have done a great deal more than many grand daughters would or could do in the circumstances. So often families take for granted the one who puts their life on hold, I cannot understand how or why this should be or how these others do it, or, what gives them the right to think this way, but it happens all the time if you let it. Don't allow any one to force you to feel guilt because the task is now too big for a single person to cope with. As Jude says, there are good homes about, if you check those available in your area, you will soon see what you like and want for your Nan, then, when you go to visit her, you will be able to give her quality time because you are not totally exhausted trying to care 24/7. Please post again soon, thinking of you, love She. XX

 

[Canadian Joanne]

Listen to Sheila

Beth,
I think Sheila is dead on. I know it's going to be incredibly hard - some families can be very challenging. Gently but firmly stick to your guns. It is someone else's turn now.

I really do think it sounds like it's time for your gran to go into a NH. I understand that you don't want her to go in but try to step back and look at the situation logically. Extra help for now is not the answer because as time goes on, more and more is required and you will get more and more tired and go downhill.

Do not let yourself become a victim to Alzheimer's also.

Take care of yourself.
Joanne

 

[Mjaqmac]

Dear Beth

Firstly, don't dare call yourself names like bitch, you are an angel and everyone knows it. That's why they are letting you continue to do everything because they know you are a loving, caring, wee soul and families play on this. It has happened to almost all of us carers on this site. There's always one in a family whom is gentle, loving and has a heart the size on ocean, this is you.

Families can be very cruel. They have a way of making everything alright in their heads and handing everything over to the willing one. They will let you break physically, emotionally and mentally and then you will get no thanks for what you have already done. You are a wonderful person for what you have done already, but it's time to look after yourself a little more. Push the door of dementia world open a little, either demand help if you really don't want to let your gran go, but please remember that it will probably be inevitable for your gran to go into a home sometime. You sound young, but you sound exhausted and emotionally drained. If no one is going to help you Beth you need to take matters into your own hands. The family will let you drop down drained before they change anything, trust me I have been thru it. Most of us here have been. Carers start off very loving and trusting but as the system and family abandon us we have to become strong and sometimes go to drastic measures just to save ourselves and our loved one. (I had to go to the newspapers to get help, by that stage my mother was dying anyway. But at least I got to name and shame a few whom were not doing their job properly). Demand help to look after her or let your gran go into a home. You can visit her as much as you like and enjoy each other's company without you giving up your life. You've done brilliantly, now let go of the reigns a little, you must if you are to stay sane. Your granmother wouldn't want you to sacrifice your life and sanity, you have obviously been close or you wouldn't be caring for her as you are, trust the advice she would have given you on this matter if she were herself without the illness.

I'm sending you a big hug for courage Wee Angel, this is your chance to change things. Take it.

 

[Geraldine]

Hi Beth

You've done brilliantly and by the sound of it you have done enough! Your Gran is in hospital and the nurses say you cannot cope on your own, so you have to be resiliant and say that you casn no longer look after your Nan at home. If other members of the family don't want your Gran in a NH then it is up to them to make the alternative arrangements. I put off NH for too long with my Mum because I always said she would not have to go into a home, then like Jude I cracked and Mum had to do into hospital. Unlike you though I am the only one and my extended fam,ily were fully behind my decision. Maybe you could get a healthcare professional to be an advocate or gobetween with the family to state your case from a medical point of view.

Good luck and stand firm

best wishes Geraldine

PS to Jude...no recriminations you did brilliantly, and aao doubt still are!!

 

[angela.robinson]

HI BETH,just need to say what a wonderfull grandaughter you are ,and obviously a very caring person ,as Sheila said ,there are other people responsible in your family that should be giving the help and support to your gran.life will become unbearable if you try to tackle this alone ,i wish your family could see some of the replys you are getting .TAKE CARE OF YOURSELF.LOVE ANGELA

 

[Jude]

Dear Geraldine,

Yep - still fighting the fight.... I've got over the guilt trip now fortunately and that makes things a whole lot better.

Jude xxx

 

[BethHorne]

Thank you all sooooo much!!!

You have all been so wonderful and supportive! I have talked to my mother, and we've decided to get some in home help to care for my grandmother, so I'm not going it alone any more. I'll have HELP!!!!!!!!!!
None of us want her in a NH, so we've decided that since I can't go it alone, we're going to put Hospice to good use and get nursing care in here and give me some help so she'll be in familiar surroundings and I'll be with her, and Mom is going to help as well.
Thank you for giving me the strength to put my foot down and say, enough is enough!
Love to you all!
Beth

 

[angela.robinson]

Well Done Beth .stay Strong ,make Sure Your Family Know How You Feel ,thinking Of You .angela

 

[Sheila]

Dear Beth, so very glad things have improved for you, stand firm, love She. XX

 

[Mjaqmac]

Well Done Beth! You should be proud of yourself for standing your ground. We all know how hard it must have been for you. Great result.

 

[Jude]

Dear Beth,

Hurray for you...!!! I'm so glad to hear your good news. Do keep posting and let us know how everything is progressing.

Good luck.

Jude