The Caregiver... How are YOU doing today?

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The Caregiver... How are YOU doing today?

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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.

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J JessieBelle Sep 2017 · Answer 1 · 2017-09-20T12:00:59.000-0400

My mother's death spiral today was because she thought her foot doctor appointment was today and not tomorrow. She's okay now that she knows it's tomorrow. I imagine that tomorrow will bring back another death spiral. These days are traumatic. It's like she's had a bad stroke and can't think at all or remember what she is supposed to do moment to moment. She is very sick and says she thinks she needs to go to the hospital because she is dying. Last week when I cancelled her appointment and today when I told her the appointment was tomorrow, she sat down and watched the TV and was all well. It's not the dementia. I know it is malingering like a child plays ill when they don't want to go to school. I know it will happen again tomorrow, so I'll just ignore. She HAS to have her feet tended.

C cwillie Sep 2017 · Answer 2 · 2017-09-20T15:59:37.000-0400

Where I live there are nurses who have taken a course on foot care and will come into private homes, is there not anything like that available where you live JessieBelle? I understand you have to be careful because of her diabetes and you would need someone able to deal with that, but it would be so much easier if you were able to find someone.

S Sendhelp Sep 2017 · Answer 3 · 2017-09-20T16:43:58.000-0400

Jessebelle, Do you find that the behaviors are seasonal? It is this way with my dH, and this is the start of the season....it is just like you said about your Mom:
" These days are traumatic. It's like she's had a bad stroke and can't think at all or remember what she is supposed to do moment to moment".
Thank you for having the words to put to the behaviors. I just now walked away, it was so frustrating. But it is over the simplest things! BTW, my behaviors are not looking too good either when this comes up, embarrassed to say.

C cwillie Sep 2017 · Answer 4 · 2017-09-20T17:11:44.000-0400

My confrontation with my neighbour has me feeling jittery and out of sorts, I feel like I want to confront the nurses about mom's tooth care. They have been giving her the oral rinse and asking her to swoosh and spit immediately after meals, mom swallows it of course, swoosh and spit is beyond her and I initially discussed using a swab to apply it. I understand what is going on, they have to administer as the doctor prescribed, but the nursing home doctor is not a dentist he can't know everything, OMG can common sense not prevail? And it is usually prescribed twice a day, morning and bedtime, not after meals. I'm working hard at biting my tongue because two confrontations in one day are too many, and nothing good will come of it anyway. Sometimes I just want to pack up my car and run away from everything.

S Sendhelp Sep 2017 · Answer 5 · 2017-09-20T17:27:52.000-0400

Cwillie,
Looked up swallowing mouthwash....
"Never Swallow Mouthwash"
"Mouthwashes and mouth rinses are meant to be spit out, not swallowed, because even natural mouthwash products may contain ingredients that can be poisonous if ingested in large amounts."

Swallowing can make your Mom sick. They need to find a better way.
What about a waterpic? Sounds almost impossible to me but maybe someone could make it work with enough towels?

Go over the nurses' heads to get the proper treatment. imo.

Sheesh...is your tongue bleeding yet? Speak up, you can do it! If you cannot speak up with the authority needed, with just the right niceness, go ahead, let it all out to the director of nursing, cry if you want....then apologize later. I will meet you over on the caregivers behaving badly thread and you will be forgiven for losing it.

C chdottir Sep 2017 · Answer 6 · 2017-09-20T17:47:16.000-0400

My mom, who has been living with my brother for about 6 weeks to give me a break, just called to ask how long she has to stay there, that she is sick of it (and that is pretty harsh language for her). I've had similar calls before. We've had many discussions with her where we explain that we are waiting on an opening in AL and that she'll probably go stay with my sister after staying with my brother. She agrees with our plan and understands, but of course forgets. And then calls. My poor Mom.

Mom, who lived in a MIL next to me, developed dementia rather rapidly over a few months. MRIs, blood tests, urine tests all come back negative. She was forgetful before, but just mildly. Now she is VERY forgetful, but still her sweet self. But for her this is her home, and she misses it. We realize that moving her around is hard on her with her dementia, but I REALLY needed a break because even though the dementia has come on rapidly, she has become more and more dependent on me over the last few years, especially since my Dad died 18 months ago. Plus I was there to help with my Dad in the last few months of his life.

She's on the waiting list for an AL place that is a perfect match, but it will be 2-12 months they estimate before an opening. After staying with my brother she will probably stay with my sister for a while. We know it is hard on her to move around, but we kids have decided that it is what is best for now. We just feel bad that it is so hard on Mom.
I’m just sad that Mom can’t be settled in her own place right now. It would be so much better for her.
I haven't returned her call yet.

C cwillie Sep 2017 · Answer 7 · 2017-09-20T17:49:28.000-0400

I HAVE looked it up Send, and this is chlorhexidine so it's doubly bad, not to mention the web says it can stain her dentures too so should be given when they are not in.

M MsMadge Sep 2017 · Answer 8 · 2017-09-20T18:39:32.000-0400

Oh geez
I need to reschedule mom's foot doctor appointment - no way I'll ever get her in my car again
2 months ago she cussed the poor podiatrist out royally- I should have known a UTI was brewing

Hate to have to pay hoca to transport her and she's apt to kick anyone new getting near her

J JimL1953 Sep 2017 · Answer 9 · 2017-09-20T18:40:13.000-0400

My dad passed away yesterday afternoon at about three fifteen. I am emotionally and physically spent. I have not been to my own home in close to three weeks. Today my sister and I went out and made all the arrangements for my dad's funeral. When we came home we sat to talk with my mom . My sister wanted to take her to her house so we could both go home. Me to start preparing a room fo my mother and my sister to get ready for her first grandchild. I also needed to check my business as we are on the waterfront with a hurricane right offshore. I have a ton of work to do to be sure things are ready. My mother started screaming she would not leave the house and then started screaming for my father to come back. My sister went home. I am still here and probably will feel for days. I was upstairs doing work by computer and my mother is at the bottom of the stairs screaming they all left me. I don't know what to with her.

M MsMadge Sep 2017 · Answer 10 · 2017-09-20T18:43:25.000-0400

Cwillie
Is this rinse to help heal your mom's bleeding gums?

I can't imagine how that would work and I understand some rinses you can't use water to swish afterwards either

Hugs

S Sendhelp Sep 2017 · Answer 11 · 2017-09-20T18:44:12.000-0400

Grrrr! Think of it as helping the NH avoid a lawsuit for malpractice.

Think of all of us, much able to be meaner than you will ever be, standing just behind you, in all politeness, nudging you to go ahead...you go first Cwillie! Let them have it, the truth....you can't go wrong. You are 100% correct, the mouthwash must go!

M MsMadge Sep 2017 · Answer 12 · 2017-09-20T18:48:28.000-0400

Jim
So sorry for the loss - does your mom have any prescriptions to help calm her before bedtime

Stay safe in the storm

C cwillie Sep 2017 · Answer 13 · 2017-09-20T19:16:43.000-0400

Jim, I'm so sorry you have lost your father and that you have been so unfairly burdened with being the one caring for your mother at this difficult time.

G gladimhere Sep 2017 · Answer 14 · 2017-09-20T22:10:23.000-0400

Jim, I am so sorry for the loss of your father. I hope mom will settle down. When my stepdad passed we did not even think about taking mom to the service. She would not have understood, and if she had it would have been a nightmare for her and everyone there.

V Veronica91 Sep 2017 · Answer 15 · 2017-09-20T22:28:51.000-0400

Jim condolances on the loss of your father. It sounds as though it was all very sudden in the end. i gree if you have any anti anxiety meds tonight would be a good time to use them. She is like to be up all night wailing not that she does not have the right but you have earned some peace.
I think taking her to the funeral would be a nightmare. She seems to still be aware enough to know what is going on and I would expect her to rather hysterical
When my husband's grandfather died, no one even mentioned the possibility of Gma attending the funeral which could have been arranged, Instead the family left her alone in her apartment where she could watch the cortage pass from her window. She did not seem to mind. Grandpa had been a pretty mean husband. He used to leave and spend his Winters in S Africa. The family suspected there was a second family in S Africa but there was never any evidence.

M mally1 Sep 2017 · Answer 16 · 2017-09-20T22:31:42.000-0400

Jim, I'm so sorry about your dad; what did HE do when your mom got hysterical? It's four hours later, did she stop screaming? Does she have meds to calm her? She's grieving and overwhelmed, but obviously you are, too.... I'll send you my wonderful husband to help out; he's an AEMT on the ambulance here and gets this kind of behavior all the time.... it's not easy; hang in there and we'll pray.

B bookluvr Sep 2017 · Answer 17 · 2017-09-21T06:41:34.000-0400

JimL, I'm so sorry about your dad. It sounds like your mom is not going to give you time to mourn your dad. She may be starting with dementia but your description of her sounds like she also narcissistic.... I Think... Everything must center around her, her comfort (not your father's wishes), her desires or preferences comes first, etc... There's a discussion thread on here about narcissistic parents/mothers. Check it out and see if your mother fits the description. If she does, You can learn a lot on how to handle your mom, moving forward.

Again, my sincere condolences on your father. You did really Good for your dad, all the way to the end. Do what you need to do about the funeral and the oncoming storm. {{{{HUGS}}}

J JimL1953 Sep 2017 · Answer 18 · 2017-09-21T18:59:38.000-0400

Thank you all so much for your kind words. The last days have been a blur. Yes my dad is gone,but in a better place and no longer suffering. Our nurse said something to me I will never forget. She said you allowed your dad to die at home with dignity. I will never forget those words. My mom has calmed a bit ,but I know tomorrow will be tough for her and all of us as we lay my dad to rest. After tomorrow I will begin to deal with my mom's living arrangements. It will not be easy,dementia and severe anxiety are in play here. I will figure it out.

J JessieBelle Sep 2017 · Answer 19 · 2017-09-21T20:03:04.000-0400

Jim, I am so sorry. I remember so well having to deal with things when my father died. He and my mother had been married 65 years. She had dementia and severe anxiety. I dreaded doing the things that were in front of me, but it wasn't as bad as I imagined it would be. I was surprised at how my mother took things in stride. The family knew he was near death, so it was expected.

I do hope you're able to take this time to set your mother up in what is best for her. I don't know what that is, but I know there is no hurry. One thing I did appreciate after my father's funeral is that I had to wait nearly a month for the death certificates to arrive. That small space in time gave me a moment to breathe before dealing with estate matters. I wasn't executor -- my mother was -- but with dementia, she couldn't do the things needed to be done. The month waiting time was needed to get some of the stress off myself to perform.

B bookluvr Sep 2017 · Answer 20 · 2017-09-21T22:17:55.000-0400

Oh, oh... I drank my very 1st cup of that colonoscopy solution. My upper lips are tingling. That is not good at all. It means I will soon be breaking out of rashes on those tingling area. Maybe I better drink water to dilute the solution that's inside my tummy. Prolong my reaction to it. Oops.. I'm now coughing. Eek! Better go drink that water.

B bookluvr Sep 2017 · Answer 21 · 2017-09-21T22:24:05.000-0400

I finally called Social Security. I don't know what time zone they're in but they were open! I was able to speak to a person who put a 'terminate' status on Dad's account. They will now forward this to Medicare. Hopefully, Medicare won't send another billing follow-up for dad's Oct-Dec coverage.

I also called dad's secondary insurance. I will drop by their office next week and have them make a photocopy of dad's death cert. I feel so much better getting these out of the way.

J JessieBelle Sep 2017 · Answer 22 · 2017-09-21T22:24:34.000-0400

Oh, no. Sounds like you're allergic to it. Maybe your doctor should do the Cologuard instead. There's no messy prep and no after-effects and no one sticking something up your behind. Unless someone is high risk, I think Cologuard is good enough. The only bad thing is collecting the sample. :-(

B bookluvr Sep 2017 · Answer 23 · 2017-09-21T22:33:53.000-0400

I think so, too. My left eye is feeling funny. I recognize this. I had this very same feeling when I took over-the-counter Sudafed. I never had any major reaction to Sudafed until that last time. My left eye felt funny, then I started rubbing it. Then I went to the restroom to check out why it's so itchy. My left eye had swelled!

I'm holding off calling the colonoscopy clinic. Once the eye swells, I will know for sure that I can no longer take the liquid prep. Rashes is one thing. Swelling is different.

B bookluvr Sep 2017 · Answer 24 · 2017-09-22T21:04:12.000-0400

Word of advice. Day before colonoscopy/endoscopy - hydrate, hydrate, hydrate. I was so dehydrated this morning, they couldn't find a good vein on the back of both hands. Finally, he tried the right. No blood came out. Yep, dehydrated. So, he had to put the IV needle on my right wrist.

I woke up after the procedure. Nurse asked how I'm doing. I said fine. I need the restroom and I'm very woozy.... every time she came in, I answered the same thing. But each time she came in, I didn't have any strength to move my body. Finally, I told her that I really need to go to the bathroom. After my 2nd surgery, if I need to do BM, I need to go immediately. To hold it in causes severe stomach pains. The colonoscopy after effects is a painful stomach of 3. But the pain level has dramatically increased because I need to go. It has gone up to level 6. I'm squirming in pain and still hooked up to everything. So we did everything slowly. I sat up. Woozy. I looked up - woozy. I looked down - woozy. I refused to rush the process despite the urgency. I told the nurse that I would hate to fall onto the bathroom floor. (Gross!!!!)

Back home. I'm sooooo hungry. Light food like breakfast food. We don't have breakfast food like pancakes. I took a few sips from my black tea. I'm going to sleep if I could just stop BMing...

V Veronica91 Sep 2017 · Answer 25 · 2017-09-22T21:31:32.000-0400

Dear Book. Sleep well tonight. You got through it with flying colors, well flying toilet paper.
By the way my veins always go into dissappearing mode every time anyone mentions IV!

B bookluvr Sep 2017 · Answer 26 · 2017-09-23T01:32:25.000-0400

SIL asked me what the doctor said after the procedures. I said that I didn't know because I never saw the doctor. SIL said that it's good. That means he didn't find anything. In my head, I said "Nope, he's too busy churning in patients." ... When I was put on my bed in my curtained room waiting for the procedure, I heard the anesthesiologist explain to the patient on my left what to expect. He was wheeled away....I heard him wheeled back as the nurse gently woke him up.... Then it was my turn. After my procedure, while recovering, I heard them instruct a new patient on my right... So, today is the surgeon's operating day. One patient after another. Not once today did I see the doctor/surgeon who did his best to persuade me to add the colonoscopy to my original request for just the endoscopy. I'm trying not to be disappointed with him.

SIL and my brother saw a different surgeon, different clinic. After their procedures, he took the time to talk to them - even if he didn't find anything with SIL. Now I know....

B bookluvr Sep 2017 · Answer 27 · 2017-09-23T01:38:54.000-0400

Veronica, I couldn't help but chuckle about your disappearing veins and needles.

K kellse Sep 2017 · Answer 28 · 2017-09-23T09:56:53.000-0400

Book, when I had my colonoscopy, I felt like I was on a production line too

B BarbBrooklyn Sep 2017 · Answer 29 · 2017-09-23T10:47:25.000-0400

Most GAIN docs here in NYC have one or two days a week when they do procedures . They see patients in their office the other days.

In general, I think most docs prefer not to give detailed information right after a patient has awakened from sedation. Do you have a followup appointment, Book? I don't think you need to be disappointed in your doctor.

B bookluvr Sep 2017 · Answer 30 · 2017-09-23T11:06:13.000-0400

I was released before 11:00am. They put me on a wheelchair and waited for my ride. I tried talking to the nurse but she wasn't very receptive. She was busy doing the paperwork. The minute SIL walked in, the nurse asked her if she's my ride. When SIL said yes, the nurse proceeded to talk to her in a low voice. I tried to listen in. I must have looked lonely because the male nurse who inserted the IV came to me and we started talking. After I got in the car, I asked SIL what the nurse said to her. SIL just said that if I'm bleeding, I need to go back to the clinic b4 1pm. If it's after, then the ER. That's it. SIL dropped me off in front of the house and left. I posted here then went to sleep.

It's now 12:15am. I'm taking my purse and I'm going to sleep. I saw my pre-op papers sticking on the outside pocket of my purse. I took it out so that I will log it in my files tomorrow. My laptop is in the livingroom. I noticed there was another paper. It Is My Post-Op instructions! Well, SIL did Not tell me about it. (I left my purse with her before the procedure.) I don't recall her telling me about the paper. After I woke up from my nap, I went googling on what to do after an endo/colonoscopy... Anyway the paper's instructions say I'm suppose to eat soft food. Too late! I asked fave sis to bring over KFC chicken for dinner. It was soooo delicious going down. Paper even has my follow-up appointment.

My pet peeve? Yes, I understand that being under anesthesia, that I might not remember anything. That does NOT give them the right to ignore me and tell everything to my ride - who by the way - is just my ride. She didn't even tell me about anything that was on that paper - food, etc... Out of respect for their patient, the nurse should have consulted BOTH of us at the same time. Especially since my co-pay is going to be about $1,000.00. Okay, my vent is over.

The Caregiver... How are YOU doing today?

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