So very, very tired . . .

[Miss]

As we approach month nine post diagnosis, I am overwhelmed with fatigue. I have been the sole caregiver. We've had a morning CNA, but the home healthcare agency keeps changing them up. Today, the case manager acted like she might not be able to get help in here for the next four to five days. Merry Christmas. I wonder how much more I can put on my plate before it breaks. To add insult to injury, the Christmas tree fell on me tonight.

 

[laurel]

Missy I feel so badly for you. I don't know what to say that could possibly help other than I respect what you are doing for your husband, and I do know how hard the job is for all of you devoted CALS. I really hope that the agency can find some help for over this holiday period. I am thinking of you and sending you lots of good wishes.
Laurel

 

[abbas child]

Missy, I've had you on my mind. Your current stress level is so rough. I hope and pray you sleep tonight, and that you hang onto the thought that this is not going to continue forever. It may sound stupid, but it's helped us with parents dying. You give it all you have, knowing that you get one shot at it. You've been marvelous. As Laurel said, you have my respect, also, to the utmost. My prayers are with you and your family...and for some good help. xoxo

 

[Katie C]

OK, getting attacked by the Christmas tree is definitly cause to believe the universe has turned against you! You poor thing. I truly hope the agency comes through for you. Hang in there.

 

[Miss]

The hard part about his is that I know in my heart that this is his last Christmas. He LOVES Christmas. Because the house is under construction (widening doors, remodeling the bathroom, etc.) we didn't get to put out all of our decorations. I hate that. Because we don't have adequate caregiver coverage (other than me), we were able to do very little shopping. He LOVES to shop for holidays and birthdays. It is all just so painful.

 

[Danijela]

Hi Missy,

I understand how you feel, I too am very fatigued, it all seems relentless. We are in the process of getting some assistance in place, in the meantime I work full time (two jobs), look after 11 month old and am the only carer for my partner.

Although we are too concerned about Christmas and I am certainly not going to break my back cooking, we (I am) are making an effort as it is our son's first Christmas. I stayed up till midnight (after aday of working and looking after the lads) wrapping presents, and only managed to get about 4 hours sleep. Now I am at work...

I understand the need to have things done in a particular way, especially if your husband loves Christmas. You want to make it count for him. Perhaps you can have an 'alternative' celebration, in a way he likes it, once your caregiver coverage has been sorted out. You are in my thoughts.

Regards, Dani

 

[mytwoboys]

Missy -

I can only tell you that I know how you feel. The home aides we had were often more trouble than they were worth - with the exception of one named Dave. He was totally awesome. Reliable. Trustworthy. Friendly. Hardworking. The rest of them kept changing out, quitting, disappearing. On paper - I had "help". In reality, I had more people to baby-sit. My kids (12 and eight) were more dependable. I would often find myself just breaking down into tears while working out in the yard wondering how our lives got to this point. Many many times I wondered just how much more I could take. I think I was starting to or having some kind of nervous breakdown before he moved into the hospice facility.

As for Christmas - I know it sounds cliche - but rejoice in the reason for the holiday. I used to get so stressed out about having enough gifts, the right gifts, the lights up. I have had to remind myself that Christmas comes whether your ready or not, healthy or not, happy or not, have gifts or not. Having suffered the loss of Alan just last week, I think my kids now realize that family and being together is so much more important.

Take care,
Sandy

 

[Pepper]

Missy, we are lucky, my husband's first CNA was a young woman who cared a lot for him, she went on leave, the new one is a young girl, lovely and very sweet, punctual and dependable. A lot of it lies with the hospice which is a very good one. Taoism has it, when there is a down, there is an up. When there is an up, there is a down, flow of life. When things flow so badly for you, it can only turn around in some ways. I hope it does for you at Christmas. Some little rays of light or moments of little happiness.

Even in darkest moments, there are brief funny things to laugh about. For instance the nurse does not want my husband to get out of bed by himself. The social worker got us an alarm pad. I have stepped on it ten times, he stepped on it once only. He is the with frontal lobe dementia yet remember each time to push it under the bed so he would not step on it. I would hear noises and rush in to see him walking to the bathroom by himself using the walker. I have to laugh at that.

 

[Miss]

Pepper, there must be something to Taoism. Last night, for the first time in weeks, I got 4 hours of uninterrupted sleep. I feel so much better today. A new CNA is here today. She seems very nice. We'll see if she is capable. Our beloved CNA is here training her.

All of the presents are wrapped (save the 3 I am picking up today), my husband's friend is coming for a visit, and life goes on.

 

[joni51]

I am so sorry for all of us...I stay tired and the really bad for my husband has not even started yet. Trying to see about this paperwork, and and that other thing that needs doing every day, and working hard all day, as the sole provider, i just wish I could get some rest.

 

[LauraW]

Missy,
I am so sorry. I truely understand your frustration. I feel like I am reading my life but with my Mom in place of your husband. I wish we all lived closer to each other. How great it would be to have a physical support system within arm's reach. I have been sad and frustrated the past few days myself. It is getting more difficult for me to life Mom and I am the only one here with her during the day. When Dad is here he is of no help. God Bless us all!

 

[maryhahnward]

Missy,

Caregiver stress is one of the biggest battles that must be confronted at some point. It is so difficult to find time for yourself AND not feel guilty about taking the time so that you can come back with some new energy. I use to work in hospital administration and one of the diagnostic codes that was used from time to time was caregiver collapse. It is a very real problem.

I will never forget one day in the early 1990's when my husband was critically ill for a long period of time with encephalitis, and the kids were 8 and 10, when a friend stopped me and didn't ask about him but about me and I cried. No one had asked how I was doing since he had gotten sick and I didn't even think about it. Everything was about caring for him and the kids. We have dealt with disability, sometimes very critically, for 17 years and now we have this brachial amytrophic thing to add to the list. I learned that day that I had to take care of myself or I wouldn't be there to care for those in my life who needed me most.

So, Missy, how are you? And don't forget to take some time for you, each day, even if it means getting a few minutes to yourself to listen to a song you like, read a few pages in a book, talk to a friend for a little bit or just sit and do nothing. From what I know of you I sense that you are an amazing woman and am honored to be a tiny part of your life.

Mary

 

[Pepper]

Missy, I am glad the tide changes a bit and hope that it continues and you will have a good Christmas. Sometimes I get so sucked into my PALS' sickness, I forget to laugh or smile and when I become aware of it, try to laugh and smile even if there is little to laugh or smile about. It does help.

 

[David_W]

Missy, Dani, Sandy & Mary:
The love and compassion you have for your PALS and your support of one another is so powerful and moving. I see in your posts a simple, poignant grace that no amount of stress, fatigue and loss can ever truly destroy.

My heart goes out to you all and to so many other beautiful souls on this forum. I pray that you all receive a measure of peace, rest and even joy in the coming days.

God bless,

 

[Miss]

Thank you David. Thank you all for the wonderful support that you give me. As I often say, I would be lost without my forum family. Happy holidays to you all, and a better New Year.