I'm new & have a question

[Susan_AU_08]

Dear Ordinary Girl,

Your words echoed my own thoughts not so long ago, I was so exhausted I thought I would die on my feet.. but can I please share something with you.. when they're gone they're gone forever.

What you are experiencing may well be the hardest thing you'll ever do in your life but it will end, and you will be here with your thoughts. She's not testing your patience, you're tired. I used to tell my mother I loved her every day, I never wanted her to go, not ever, but at the end I did want it to be over.. there's a difference.

She never wanted to be a prisoner in her own body and I never wanted to be a nurse, but I loved my mother and she loved me and we did our best in our new roles together. It wasn't a rosy path, it was a scary crash course in learning new things and working harder only to see her continually decline. It was frustrating in so many ways and we felt deprived of so many things, but we had our moments, she giggled when the syringe popped out of the feeding tube because I didn't push it in far enough, and sprayed us both with formula, she laughed at the bruises on my legs from walking into all the equipment, she would touch my hand, or poke me if I looked sad... I'd return this favour by tickling her... sometimes I'd threaten to get her drunk by pouring alcohol into her peg (I never would - neither of us drank alcohol, but the idea made us both laugh), sometimes she would kick me when I never saw it coming and I'd remind her I could have her locked up for that as child abuse is an offence, she'd look at me with a cheeky expression... even when the time came when I could no longer understand what she was saying, we never stopped communicating.

Three days before she died looked at me, pointed to her herself, drew a love heart in the air and then pointed at me with her atrophied hand.. she told me she loved me, no notepad, no speech, but with more meaning than words. These are the memories I cherish if I have to remember anything of those dark times, and everything else I remember is the time before diagnosis, so ilgal, if you are reading this, please don't ever feel you are a burden, the only burden is the weight of having your loved one suffer from an illness with no cure, it is never, ever your loved one themself.

I wish all PALS and their CALS many of these small moments in time to help carry you through the days ahead.

 

[MtPockets]

I sure am not a Doctor, but my Doctor has me on 30mg Cymbalta one in the morning and one at night. It helps with the mood swings, depression, etc. The only thing I notice from it is I am sleepy a lot more than I use to be before I took this medicine.

I use to just take it just at night to help me sleep, but requested that he increase the dosage to help me overcome the pity parties I use to have that no one wanted to come to. :-D It works better now to keep me in more of a stable mood.

God Bless
Capt AL

 

[Icanmanz]

Susan, thank you very much for such a top notch post. You know, as I was reading your post, I was so pleased to hear that there are people out there that over look the burden, the hard work, the everything that is brought upon us by this dreadful disease, as it strikes home. I, too, like you never for a moment thought that my son's caretaking was a burden to me, nor felt deprived of things that I could not do for myself because I became his caretaker. Like you, I felt like I wanted for my son to remain with us, but could not stand to see him suffer, and I knew that his only peace would be when he would tell us good bye forever. May God bless you for being such a wonderful caregiver, and I am sure that when your loved one left, you were left with peace in your heart, because you never showed impatience before your loved one as you were caring for him/her. That makes a BIG difference. God bless!

Irma

 

[CindyM]

Well, we come from a family where we tend to express what we are feeling, and sometimes impatience is a natural part of life when you are overworked and running on empty, so to speak. So we just acknowledge the emotions and then forgive and forget. In a perfect world, we’d be able to get a little extra help from time to time, as full time care for anybody, no matter how beloved, is very demanding.

It does help to remember that it is the illness putting us through the stress, not the patient.

 

[ordinarygirl]

I haven't checked in for a while & was touched by the new posts. I stayed with mom last night & finally around 4:30 a.m. she stopped asking for things & slept for about an hour. Then a little dozing off & on until I left at 7:00 am. I go back in the morning to spend the day, then I'm up with her again the next night. I'm exhausted, but I know the end is very near. A family friend (who works for a home health agency) listened to mom's chest a week ago. She said the lower part of her lungs is not working, just the upper. She said her guess was maybe 2 weeks. Of course, we don't know that for sure, but her breathing is getting weak. She's not on a ventilator or oxygen. She doesn't want to prolong things. Keep us in your thoughts & prayers.

 

[Icanmanz]

Hi ordinarygirl! Thank you very much for updating us on your mom's condition. We will certainly keep you and your mom in our prayers. God bless.

Irma

 

[brooksea]

Hi ordinarygirl,

Hope your mom is comfortable. Wishing you and your family the best with your mom.

 

[TOUGHTIMES]

I could so relate when I saw your post. We moved in with Mom to care for her last year (her house was more accessible than ours) and I have two boys (8 and 5). My husband is military and deployed overseas. The stress of trying to juggle the needs of caring for her with the needs of 2 boys is exhausting at best. Lately, she has been waking at night, and I am lucky to get 5-6 hours (often broken) of sleep a night. I cannot sleep during the day because the youngest is only in preschool for 3 hours. I constantly struggle between my feelings of it is too much and I cannot do it anymore and the guilt that in time this will pass. I have no idea when that time will come, and I feel guilty sometimes that maybe it would be easier if I did know. You articulated so well my feelings that when we are no longer exhausted that we also will no longer have our Moms. But then at times, I feel that I have already lost her anyway since the women I knew and loved is trapped inside this deteriorating body. My mom is in a wheelchair and can no longer stand. We use the lift to transfer her to the toilet chair and into/out of bed. She has lost the use of most of her left arm and her right is becoming weaker. She can still feed herself somewhat but struggles with swallowing certain items and cannot lift heavy glasses. We found lightweight plastic tumblers that we only fill halfway so that she still has some independence. She requires help with most things throughout the day including wiping hair away from her face. She is sleeping more and more during the day when we have additional caregivers come by the house. She does not want a feeding tube or help with breathing.

Thank you again for articulating so well what I have been feeling lately but afraid to share. It helps me knowing that there are others going through some of the same agonizing issues and that I am not alone.

God Bless!

 

[pmbenb83]

Hi Toughtimes,
I'm so sorry to hear about your mom and what you both are having to endure. Even though you are exhausted beyond belief, I know your mom appreciates your every sacrifice, and in time, you will feel good knowing you were there for her. My husband and I went through a similar situation exactly one year ago with his mom. She had lung cancer, which spread all over. We stayed with her for most of the final month with a break a day or two a month from his sister. Family dynamics (dysfunction) made it unbearable, so she moved into an assisted living home and 2 weeks later she passed away. If we had only known that it was that close, we would have stuck it out, so that she could have been in her own home. To this day, this is our only regret.

Hopefully, you will be able to get some help from family, friends or a home health care company, just to give you a breather once in a while. With your husband overseas, taking care of your mom, and being a mom to young boys, you need a moment to just soak in a bubble bath or sit in a park and listen to silence. It's time to call in some backup.

Take care of yourself!
Pam B in Va

 

[pmbenb83]

Susan AU 08,
What a wonderful post. I'm glad to hear that through all of this there are times of cheerished moments still to come. A lot of hard work, but still good memories too. Thank you for your inspiration. You really touched my heart.

All my best.
Pam B in Va