This seems to be a question that is not asked enough or we think what we are feeling is not as important as what our loved one is going through. This job we have taken on is a tough one and there are days when I think my "stress rope" cannot be pulled any tighter. Then there are other times that make those bad days just a memory. Do you feel like banging your head against a wall one day? And then the next day your loved one is attentive and loving and comprehends whatever you say? There are some who keep those feelings bottled up within themselves; others take the time for outside resources and others who look at sites such as this for some understanding. I do better when I have someone else to bounce my feelings off of. Let's face it....we aren't superhuman and besides ourselves and perhaps a family to take care of we now have taken on the responsibility of another human who is incapable of taking care of themselves. Do you breeze through the care giving without a problem? If so, I would like to know how you do it, maybe you can offer some new ideas; do you have feelings of frustration and need to talk about those? Come and talk and know that you can speak freely and without judgement and without finger pointing.
I am caring for my mother-in-law and have been for about 1 1/2 years. She has moderate dementia and incontinence. Other than that she is very healthy. Sometimes that short amount of time feels like 10 years and I wonder how long I will be able to do this job. I get so very tired of hearing the same thing day in and day out, but I have to remind myself that to her, each time she sees me, she is offering new information. At times I have no problems communicating with her, but it seems like more and more she cannot retain a thought longer than 5 minutes. We have had to make signs for her so she will know what she can and cannot do. So far it's working, but for how long? Maybe I will have to end up making her a "Book of Do Nots". She is on memory drugs, which don't seem to make a difference. So why do I continue to dole them out to her? I guess I'm afraid of what might happen or how she might act without them. I might have to rent a boat or buy a helmet! Sometimes I see something in her that leads me to believe that she could get aggressive and what would be my reaction to that? At the end of each and every day, after she is tucked into bed, I breathe such a sigh of relief. The "inner beast" is quiet at last, or at least for a few hours.
Pull up a chair and visit........I would like to know how you are coping everyday..be it good or with handfuls of stress.
I'm just relaxing for a moment before going to bed. It's raining outside, just lightly, and I love hearing that sound. It's so soothing and it's NOT snow! :) Too cold to have windows open but I can hear it on the deck outside the window. Spring weather will be here soon. I love it!
Hospice got my mom a Broda wheelchair and she is better able to hold her head up now. The thing is huge! It's like a recliner on wheels and she is able to put her legs up when she's sitting in it.
We had a semi-pleasant lunch at the bistro in her AL. More wiping up spills than eating with her poor arms, but at least she ate something.
I cleaned things up then told her I was ready to go as I had errands to run. She looked at me and said you need to get me to my room.
My eyes got wide, I'm sure. I'm used to her in her flimsy transport chair. This behemoth chair is beyond my comprehension. I told her that in not those exact words. Fortunately/unfortunately, a visiting nurse showed me how to unlock all for wheels and got us on our way.
I'm a petite woman with a bad back. All of the sudden I'm pushing a freaking huge Barcalounger recliner down a long haul and into an elevator. Steering the thing is impossible. When the elevator opened on her floor, there were several people with walkers waiting to get on. Ohhhh!
I felt so bad that everyone had to move to get her out. I was hopping mad that I allowed my mom to place me in this situation. I'm not a CNA, I have no training with medical equipment and she is paying $6,000 a month to talk ME into doing this. I'm a dummy but I guess the guilt buttons still work.
The worst part was getting to her room and we were locked out. The keys were on her transport chair! Back I go down to the front desk to find a CNA to get us in. I was sooo frustrated!
When I was leaving, three people that work there gave me a big hug. They heard what happened and know how my mom abuses my willingness to help. They said they will talk with my mom about the Broda chair. It's a liability for me to move her. I am in no way to transport her in it. Even at 75 pounds, she requires a two person lift to her recliner which she does automatically when she gets to her room.
I feel stupid that I allowed her to talk me into that fiasco. Must've been a FOGgy day. *sigh*
We had that weird viral thing here, too, seems like it's all over the place right now. Comes and stays for weeks, lots of coughing and congestion, and the fatigue that comes with it is terrible.
Please don't eat any more shrimp chips with an allergy that extreme. Are sisters trying to intentionally put you out of commission or something??
Windy, you're a very good person. And strong. Your mom sounds closer to the end of the road she's traveling. We're here if you just need to share this journey, to let it out instead of keeping it all in.
Came home from the clinic. It's not allergies. Nor the flu. Something viral that's causing the sneezing and head stuffiness. Just keep what I'm doing - hot teas with honey, gargle salty water.... and told to take lozenges for sore throat and Tylenol for the throat pain. It's not contagious and I can go back to work tomorrow.
Nothing is trivial when it comes to issues at any stage of our lives. It just pains me to hear of such a little guy having a difficult time at the very beginning of his life. ((Hugs)) to your family and wishes for a long and healthy and happy life for him.
Also, I wish for some rest for you. The constant yelling by dad must drive you up a wall! It must be maddening. Poor friend!
Thank you all for your kind thoughts. It's just waiting time now. *sigh*
Mom can't brush her teeth or feed herself now, and refuses my help or anyone's help. Cachexia is advanced now. Time just seems to go so fast.
Trying to adjust to what is to come. I know a lot of you have been in this place. I've been there once before with my dad. I know it gets better eventually. Just hate the dying phase.
I've been feeling a bit better. The part time job I got kills my back but I needed the break from grandma. The problem now is pain management for myself. I am slightly concerned in the future if the caregiver burnout I had will reappear? Now that I'm doing both the job away and the job here.
As for the shrimp chips, correction on that. I used to eat lots of shrimp chips when I was forced to no longer eat the real shrimp. It's like when smokers need to quit smoking. I tried the cold turkey, or the cold shrimp. That didn't work. So, to ease myself off the cold shrimp quitting stage, I ate shrimp chips. For a long time, I had no reactions to it. Then one day, I did. By that time, I was getting sick of shrimp chips. So, no hardship there. Anyway, I've reached the point with my shrimp allergy that I now react to cheese curls that are made in the same facility that makes shrimp products. I know, from experience. (FYI, I didn't read the cheese curls container. It had in big bold warning to those allergic to shrimp....) So, my family knows I'm allergic to shrimp. Fave sis will always offer me some of her salt-n-pepper shrimp when we're eating out. Oldest sis insists on giving me shrimp chips. Go figure!
Made an appointment with doc tomorrow for my throat.
By the way, one last thought, did you know that there's such a thing as Extra Soft toothbrush?! I have discovered there is such a thing! I tend to brush my teeth hard. No matter how I try to brush lightly, I end up heavy handed. Lately, brushing is painful. This toothbrush was a freebie from my last dental cleaning appointment. Oh my... I enjoy brushing my teeth these past couple of days. I haven't even tasted blood. No matter how hard my hand pushes against the brush, it doesn't even hurt my mouth. So for any of you who are heavy handed when brushing, I recommend getting those extra soft brushes... We don't have those on island - I would have bought it. I found some on Ebay. Night!
Book, I'm speechless. Eating shrimp chips? Going back to work as sick as you must still be? Please take care of yourself.
I went to work today. I was sick tired. When boss walked in and I greeted him, he immediately told me that if I'm still not up to par, I should go home. Fave sis just dropped by to borrow money to help pay for preemie's hospital visit. She told me that I sound awful. Hmmm, I sound normal to me...I wonder if that's why the boss told me to go home and rest...
I couldn't help it. Oldest sis just gave me a bag of shrimp chips. SHRIMP chips. What immediately popped into my head, "Is she trying to kill me?" .. I like shrimp chips. I kept eating it until my allergy finally forced me to stop... tingling tongue that feels funny- is scary to experience. And yes, she knows I'm allergic to it....
Dad is vocal...nonstop...over and over. Throwing in some cussing, too.
Take that shot of brandy yourself
I love Duluth. It's a beautiful place. Love the lift bridge and watching the iron ore boats come into harbor. It's quite the experience. We have visited a few times. The Northshore drive is incredible, especially in the fall.
That said, kids I am in such a place tonight. Mom hasn't been able to hold her head up since Friday.
I think we took her out to her last Sunday lunch. I was in tears on the way home, that from a person that hasn't been able to cry in five years.
Mom's head is bowing towards her lap since Friday. Mom wanted coffee and a shot of brandy. Tried two glasses and two straws. Nothing worked.
She is actively dying.
This is directed at the community in general.
Here in Maryland, there was a very minor snowfall last week. That everyone(except me), was freaking out about. It was less than half a foot. In Minnesota, there would sometimes be up to four feet of snow. They just took it casually, no freaking out.
P.S.... I called a restaurant and placed a take out order this afternoon at 3:30pm. Yum!! I ate like a starving person. That beef shank soup was soooo delicious!
I have the full blown flu. The first time I tried to take nap after work, I couldn't sleep with dad constantly calling sis or my name every few minutes. I kept jerking awake. I've learned that if I turn on the radio, even when I take a nap, when dad calls out, my conscious mind jerks awake but hears the soothing music despite dad's voice. I had a better nap this way.
Yesterday was really bad. Body aches, severe headaches, etc... even with the fever. I was ultra miserable. I left work early. I asked nephew if he can still stay and watch grandpa. I'm going into my bedroom to sleep. Food is bland. Water makes me want to throw up. I was dehydrating but I just couldn't get myself to eat/drink.
And d*rn it, every single time I have to blow my nose, I got this very excruciating headache. I've had the flu before. I never ever had it where I blew my nose and it caused this sudden severe headache pain. And yes, I blow my nose without blocking the other nostril. Last night, at 10pm, I blew my nose, severe headache pain, and ... my vision became wavy. Ohhhh. that's Not Good!!! Yikes! Something is wrong inside my head. I decided hot soup (cup-o-noodles) will help release my head pressure. I dug up the green tea bag to drink hot green tea after the noodle. Well, since then, whenever I blew my nose, no more sudden excruciating pain. I will make green tea later on today. I'm just soooo glad that I did Not react to this brand of green tea like I did with the other brand, which I broke out with rashes along the lips. Today, I'm starting to cough.. a lot ..... sigh... time to do the laundry, feed dad lunch, and maybe sneak a nap in.
She survived the urologist today. I understand mistakes can happen (I make enough myself!), but I'm a little miffed. Mom's catheter missed the bladder and was vaginally placed by hospice. Grrrr. It's been that way for days. Thankfully she was able to pass enough urine on her own to not be in a lot of pain. The bag filled up really quickly though after proper placement.
The urologist suggested we secure an appointment with him a month from now. We are to ask hospice to replace the catheter the day before. If it works, cancel the appointment. If not, back she goes to see him. Smart guy as it's hard to get in to see him last minute. We only got in today because someone had cancelled.
With the shape she's in, it is hard to look that far ahead. She is certainly one stubborn and determined woman. She's quit saying she wants to die quite so often. When she said it with every visit, I told her I could understand with the condition she's in and being so miserable. I more or less gave her permission a few times. Her response to me is always, "But I'm not dying!". **sigh**
My brother had a long talk with her and she insisted she is not afraid to die. Who knows what goes on in her mind. It's sad.
When the time comes, I agree with Book's recommendation - make sure you tell Mom it's ok to go. Tell her you'll be ok and you know she'll be watching out for you, but that you'll be ok and it's ok for her to go. The staff will be able to tell you when that time is coming - they know the signs better than we do.
Big hugs to you...we all know what you're going through. Please know we're here for you if you need to vent.
Seriously, it had to be several people here on agingcare that told me mom was very close to the end. Mom had stopped peeing, too. So many signs that I didn't see or acknowledged.
We all told mom that it's okay to go. I whispered to her that she can go now. That dad cannot hurt me anymore because he's bedridden. She doesn't need to protect me anymore, etc..
I'm glad that your son came home to visit. It helps balance you and strengthens you. Take care.
It sounds as though Mom's kidneys have completely shut down which means that other vital systems will follow leading to her passing.
Her large weight loss means she has been living off whatever small reserves she has and possibly pure willpower.
Do you have hospice?
Now is the time to tell her the last things you wish her to know and tell her that it is alright for her to go and that you will be sad but OK. It sounds as though she is very close to the end. Blessings
She lost 3.2 more pounds in a month, now down to 76. Must be burning liquid calories for fuel. *sigh*
Hang in there everyone. It's said old age isn't for sissies. It's hard on the caregivers too.
Have a urologist appt. Wed. morning. Hospice approved amazingly. Some urine is being passed though not through catheter. Now her bowels are loose.
I was finally approved to access her medical records through her current visiting physician. Cachexia was long something I suspected and there it is on their hospice DX. Oh boy! Hard to see it, though I knew it from my observations as a non-med person through talks with my good RN friend.
I hate this. It's hard to see your parent go down, no matter the age. After years of this stuff, one thinks they are prepared. I honestly don't know how I will feel. It's been a crazy ride and it's not over yet.
Got a good break tonight with our son who is home over spring break from college. It is so fun to be with him and laugh. I needed that!
They have to be able to get the urine out, and a suprapubic cath is safer than urethra for an elder person who needs help monitoring their urine output, infections, catheter blockages and such, in my non-med-pro opinion. You can monitor it better and there's less chance of causing infection because the abdomen wall has fewer bacteria than the nether region.
I hope your mom can be reassured soon that this isn't a big deal if they want to put in a sp cath. Retaining urine is bad, sp cath is not so bad... given the options. Thinking of you and your mom, windy. (((hugs)))