Starting with caregivers

[Nuts]

The VA is about to approve hours for an aid, and we've just realized that with the monthly limit on our long term care policy (we though Diabetes would get him...), we'll probably never exhaust it and might as well start using it. He wants me to have help now. Here's the thing--I am extermely fortunate in that I'm not crazy or exhausted yet. I know how rare that is. I also realize that it's better to start accepting help now than trying to get things in place later. The thing is, I don't want to share him yet. I don't want to face the need for outside help. I don't want the parade of people to start filling our days. I want to close out the world and wrap myself around him and pretend that this is as bad as it will ever get.

I know that I need to get back to walking and doing some things for myself while I can, and I'm already having trouble with the monotony of the daily grind, so I've done my best to cut out everything else so that I don't feel the loss as he needs more. I'm not ready for this, and yet I know how fortuante I am to have it available. It's just an admission that I don't want to make--a reality that I don't want to face.

How to do it? How to hand him over to strangers? How to give up the intimacy of caring for him? I know I need to do this, both for my own good and to ease his concerns for me, but it's so hard. I want to turn back the clock. I want to go to sleep and wake up five years ago. I DON'T WANT TO ACCEPT THIS!

 

[tripete]

Nuts, it is ironic to read " I want to go to sleep and wake up five years ago. I DON'T WANT TO ACCEPT THIS!" my wife was just saying that she does not want to remember anything but the spring of 2011 -everything else is to hard.

I am sorry for your pain.

 

[cheerleader]

I am so sorry you are torn up. One thing I've learned through the journey- you will NEVER be ready for what's ahead and never be ready to fully accept it all. I discovered when the end came, I was totally physically and emotionally exhausted and didn't realize it. Thought I was superwoman, and was fully capable of doing it all and WANTED to do it all. Boy, was I in denial! My kids literally waited on me hand and foot for two weeks after we lost my hubby. NEVER before have I let anyone care for me, superwoman! Sounds like you recognize you MUST accept help to preserve yourself. My thoughts are with you, Sister, as you continue to give all you have to loving your husband. Hugs. Donna

 

[Nuts]

Donna, the sickest I've ever been in my life was after a stressful situation. Once the stress was gone, I fell apart, and that was nothing like what lies ahead. I'm glad your children were there for you and that you allowed them the priveledge of caring for you. Mine have already epressed their gratitude that I am taking antidepressents. I hadn't realized how glum I was until they told me!

Pete, please give your wife a hug from me. I almost wrote that I wanted to wake up a year and a half ago--prediagnosis--but now that I realize just how serious those early symptoms and falls were, I suspect that I wouldn't be able to ignore them quite as successfully as I did the first time around.

OK, I just gave myself a wedgie (pulling up those big girl panties). It's pretty pathetic to complain about getting help when so many people would give their right arm for it. Now I'm going to drag him to bed so that I can turn him into a pretzel (range of motion--don't get excited guys) before I fall asleep.

 

[Grumpy'sWife]

I think one of the hardest things I did was letting someone help me. We are fortunate to be on a program through our VA that simply gives us an allotted amount of funds each month to use for an aide. I started by hiring my sister (who is an LPN) and then hired someone from our hometown who we both knew of. I have someone here Monday through Friday from 9 am to 1 pm. Weekends are as needed but mostly we are on our own.
Randy no longer has any movement except turning his head from left to right. With someone here we bed bath him, do personal care and dress him as a team. We get him up and while I do breathing treatments she will change sheets, vacuum, put things away, etc. Then if I have errands I run them, sometimes I just go in the office (fancy way of saying I have a desk in the spare bedroom) and answer emails, return phone calls, pay bills. She leaves at 1 and honestly most days it's just the two of us for the rest of the day. On most Wednesdays my sister comes and I go play Bingo with my girls from 7 pm to 9 pm.
I felt the same as you did. How in the world could I just hand him over to someone else? It was so hard and I still only have those two people that I leave him with. I have never even left him with his own mother lol. One of my favorite times of the day is the end of the day, once he is bed and we are doing that nightly routine....it is the time when we talk about everything. Sometimes we cry, sometimes we laugh but it's together, a feeling I can't explain but that I know I will miss.
It is hard but he tells me he worries less about me since I have help. I have people I completely trust who know his complete routine so if there was an emergency I know they could handle it until I was home. I don't know if that helps any but thats how I cope with it.
We will be thinking of you.
Hugs
~Kaye and Grumpy

 

[cheerleader]

Dear Nuts and Kaye, some days I wonder why I still come to the forum! It is so hard to watch the pain those of you still caretaking are going through. (And the frustration, despair, courage and humor our Pals display!). It breaks my heart all over again. But I know the reason why I can't stay away is because by feeling your pain, and reliving the journey with all of you, I know that I am SO lucky to have survived this and to have had the privilege of making life as good as possible for my loved one. And I would do it all over in a heartbeat. And I know that I am still very alive because I can cry for you. You are always in my thoughts- wish I could give you more but the sisterhood of understanding is the best I have to offer. Hugs. Donna

 

[Atsugi]

Now that you make me think about it, maybe there's a compromise.

I never let Krissy go into the hands of others completely. When we had nurses in the house, I trained them, gave them guidance what to do and when to do it.

Having the help allowed me to sleep for several hours at a time.

 

[4tloml]

It's pretty pathetic to complain about getting help when so many people would give their right arm for it.

My husband's progression is a little behind yours, but I really get what you're saying. Maybe it's not so much complaining about getting help, but about one more thing this monster takes away from us--our "cocoon." I feel like we've created our own little worlds to protect and care for our PALS, but then the ALS cracks it and we have to bring others in. We can feel so fortunate to be able to have the help, but it can also feel like a loss and intrusion. I sometimes get chilled to the bone just thinking about it.

I'm so sorry you're facing this right now.

Donna, so glad you still come here. You, Tillie, Laurie, Atsugi--your wisdom, experience and encouragement mean so much.

 

[affected]

OK Nuts, instead of thinking that way, try this.

What CAN they do that will help you?

Can they do some housework or garden work so that you have more time with your husband?
Can they come and be there with him and do some meal preparation or something while you go out for a walk?
Can they take him out for a drive somewhere nice so you can just have some time to do things you want around the house without an ear out?

That way, at this point you are doing his personal care, but they are relieving you of having to do and be everything. They also begin to establish a relationship with both of you, without doing all the personal care stuff at the beginning.

Maybe they could come in 2 days a week and just do that stuff so they aren't intruding too much?

You probably can think of things that you are doing besides his personal care that feel like they tip the scales on how much you can achieve in a day. That's what you need to get someone else doing.

The whole time I had care workers coming in they were only doing real personal care in the last couple of months. I eased them into it both as Chris would tolerate it and as I needed more help.

So at first they prepared his breakfast, cleaned the kitchen, made up his bed and the veranda where he sat during the day. Did the washing, cleaned the bathroom, cut up veges and stuff for the dinner that night. When he was cooking they did some of that with him as his hands were weak. They learned how to do simple massage on his hands. Made both of us cups of tea or coffee. Take the garbage bins out and bring them in. It wasn't until I broke my toe that they started actually showering him.

But it was huge having someone doing so many of those little things and I even learned to leave the housework for them after a month or so!

 

[Gembead]

Great ideas Tillie, it will help me down the track a bit.
Love Gem

 

[Nuts]

Every time I whine here I'm reminded why I do...I always get a new perspective! When I think of help I think of hands on help with hubby, but doing other things to free me up--that qualifies too! I would love to find a caregiver or two who would make this journey with us. I keep reading about the nighmare problems with them... I guess you don't know if you don't try!

When I think of having help I think I need a specific list of needs, and indeed I can come up with one. We'll call it the routine cleaninging and prepping that would not be a burden if I wasn't also his legs and strength for so many things throughout the day. Just having someone here to help him out so that he can use his precious energy to do what he wants (working right now) is also important. Thank you all for helping me get my head on straight about this. Now that you have me thinking my list is growing!

 

[Nikki J]

Sometimes it takes time to get a good match. We have found personality and attitude to be the biggest factors. You may not get a perfect match but you should be able to get someone that fits well. My sister recently had to get a new caregiver as one of hers left. It took a number of tries but now has someone she loves. Her situation is different as she needs the physical care now but early on the caregivers did more household things and they still do light housekeeping and often prepare dinner for the family like a casserole or salad

 

[Barbie]

Nuts, you have the luxury of looking for the right person who you feel good about to come into your home and help. I am lucky I have had 2 really good nurses for my husband and they have become very close to me and him during their tenure. bringing in help doesn't have to be a parade of people, and if the two of you don't want full time then that is ok too. but you build your network so if you do need more help then you have it. and you learn how to manage home aids as well. If you want to continue doing the personal care, get someone to clean or stay with him a couple of hours a day (maybe 20 hrs. per week) so you can get out and walk or get your hair cut or have lunch with a friend. the longer you are at this, the more important those little things are. 24/7 care is brutal physically and mentally and the breaks help you perform better over the long haul. And you want to be there and do your best for the long haul!

I feel a little silly now that I have hired a night time caregiver 2 nites a week--she just sits with him while he sleeps and I go up stairs and sleep uninterrupted by myself. I feel a wave of guilt every night that she shows up--but I needed this so much for ME, and it is bliss. those two nights off have helped so much already and have not hurt him at all. my shoulders are less achy and my memory is improving because I am not walking around exhausted constantly.

 

[cheerleader]

Barbie, so good to hear the relief is helping you. You have been at this SO long and still manage to remain loving and positive! Hooray for Superwoman !

 

[affected]

You just have to be open to the fact you will spend more time in the beginning training people, but if you find a good match it will be so worth it.

We were really lucky and had more good or at least OK workers come here than the couple of poor quality ones.

I did learn not to run around cleaning up before they came to clean the house, but it took some weeks ... :lol:

@Barbie I'm so grinning to know your night help is working out!