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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B bookluvr Sep 2017 · Answer 1 · 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.

J JessieBelle Sep 2017 · Answer 2 · 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.

J JimL1953 Sep 2017 · Answer 3 · 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.

B bookluvr Sep 2017 · Answer 4 · 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}}}

M mally1 Sep 2017 · Answer 5 · 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.

V Veronica91 Sep 2017 · Answer 6 · 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.

G gladimhere Sep 2017 · Answer 7 · 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.

C cwillie Sep 2017 · Answer 8 · 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.

M MsMadge Sep 2017 · Answer 9 · 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

S Sendhelp Sep 2017 · Answer 10 · 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 11 · 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

J JimL1953 Sep 2017 · Answer 12 · 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 13 · 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

C cwillie Sep 2017 · Answer 14 · 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.

C chdottir Sep 2017 · Answer 15 · 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.

S Sendhelp Sep 2017 · Answer 16 · 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 cwillie Sep 2017 · Answer 17 · 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 18 · 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 19 · 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.

J JessieBelle Sep 2017 · Answer 20 · 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.

S Sendhelp Sep 2017 · Answer 21 · 2017-09-20T10:43:08.000-0400

Jessebelle,
Nerve wracking, yes!
Setting aside my own obligations, to serve someone who is being unreasonable has me shaking at times. So I am having to refocus my efforts.

If a person cancels their doctor appointments, can they cancel their nail appointments?
The problem is, probably not.

There is a lot on your list, wouldn't it be nice if we could re-do the list!

J JessieBelle Sep 2017 · Answer 22 · 2017-09-20T10:18:18.000-0400

I'm going crazy. The washing machine isn't working well, my mother's bathroom sink has a hard clog, I need to do my own work, and we have a foot doctor appointment tomorrow. My mother has gotten into a thing where she goes into a confused death spiral when she has a doctor appointment coming up. I can't not tell her, because it takes her hours to get ready to go. Last week she went into this death spiral, so I called and cancelled her eye doctor appointment. Then she got all well really fast. She had acted like it was her last day on earth.

Well, she's in her death spiral again today and I need to call the plumber. The washing machine repair person is coming Saturday and she is going to go have her nails tended to tomorrow. Gosh, why does this have to be so nerve wracking?

B bookluvr Sep 2017 · Answer 23 · 2017-09-20T09:46:02.000-0400

Pam, I can just hear your hubby when you tell him about the separate bedrooms. However, I'm glad that you were able to get a completely uninterrupted sleep. I was thinking that maybe Hubs, FIL and cousin should make the river house trip more often, like once a month!

On another note, it was driving me crazy that oldest bro, administrator, is not doing anything about Dad's Medicare bill for Part B coverage Oct-Dec, $750.00. I finally caved in and called Medicare. The guy was wondering why we were sent the Oct-Dec billing when they already have in their file that dad passed away in July. He's not able to do anything about the bill. I or my brother needs to contact Social Security. I called SS but they're closed. Yes, yes, I know. Brother as administrator should be handling this. They procrastinate. When they used to pay for our power bill or my car insurance (long, long, long, long time ago), they didn't pay the bills on time. I got delinquent notices from my insurance and we've had our power cut off. I finally took over the bills.

P pamzimmrrt Sep 2017 · Answer 24 · 2017-09-19T18:48:18.000-0400

Normally when I get my days off after 3 x 12 hour shifts, I am wiped out the next day. Hubs went to river house for 3 days with FIL and cousin, and so I was able to sleep last night without the 500 coughs and sneezes I normally have to hear, and the dog barking at the sneezes. OMG,, I felt great today!! Slept almost all night.. dog cuddly and quiet. Mom and I went running errands and to the orchard.. got her to eat.. a great day and no anxiety attack. Perhaps I need to tell hubs we need separate bedrooms? Yep, that is gonna go over like a lead balloon! And yes he has allergy meds but says they don't work!

B bookluvr Sep 2017 · Answer 25 · 2017-09-19T08:19:50.000-0400

I was able to watch the 1st happiness video, all 11 minutes. While I was watching the 2nd one, 8 minutes, I started to yawn. A lot. The next thing I knew, my head was thrown back, eyes closed, slumped on the chair and I was sleeping. I don't know what it is about these Happiness videos. It's like my body crashes. Well, it's a sign that I should just take my time. Later.

B bookluvr Sep 2017 · Answer 26 · 2017-09-19T08:15:00.000-0400

dbrooks, I can't stand poop mess. I tended to freeze when my dad used to touch his poop and smeared it on himself/bedding. I was totally grossed out and even with gloves on, I really didn't want to touch or go near him. I think you're a very strong person to be able to handle that!

Is there any way of finding someone, a non-family member, to help give you 'respite' from caregiving? Is there a senior division in your local government that might have a program that you may not be aware of? It sounds like you really need a break.

B bookluvr Sep 2017 · Answer 27 · 2017-09-18T17:55:45.000-0400

JimL, how are you doing? How's the home front? Your dad? Is your mom still being the drama queen? Right now, it's your dad who needs you the most.

When my dad got a mild stroke, he could have gone back to walking if he did his physical therapy. He refused because 'it hurts' and he was tired of decades caregiving mom. He refused. He wanted to be pampered. So, it was his decision to be bed bound. My mom was in a vegetative-stage, 24/7 oxygen, trache on throat, stomach feeding tube, and needed constant throat suctioning every 5 minutes (she can choke)... Towards the end of mom's life, my dad wanted to be first - first to feed, first to change pamper, etc... Several times, I had to tell him that mom comes first. It was a constant struggle with him. It was like he no longer cared about mom's care and just only his. I never deviated - mom was first... I see your mother's actions similar to my dad's. {{{{HUG}}}}

D dbrooks Sep 2017 · Answer 28 · 2017-09-17T18:14:09.000-0400

How do I feel today?
Well I have had no sleep for two days cleaning up poop and giving my father in law showers to clean him up. I still have chores and school work to do but I am so burnt out . It has been 5 yrs taking care of my father in law with absolutely no help from his side of the family but that is ok they will get their rewards in the end. I look at it like they really don't know what I go though everyday but on the good days they are missing out on a lot quality time with their dad and they will regret it.

V Veronica91 Sep 2017 · Answer 29 · 2017-09-17T10:13:23.000-0400

Jim of course you are all overwhelmed. Anything your mother says or does is out of her control so hard as that may be don't take it personally. Her focus is on changing reality which is that Dad is dying and will no longer be there to meet her needs. So she is trying to prolong his life in every way she can.
I agree that the anxiety will likely prolong Dad's life and suffering but only as long as his body can sustain him.
You mentioned that Mom is also under hospice care. Do they have an inpatient facility where Mom could go at least temporally or could she be admitted to another facility for the 5 day respite hospice provides every benefit period. This is not something you can "make" her do unless she has been declared incompetent. The other alternative is to have Dad moved to a facility if he would agree to that. He probably won't agree to that either so you may have a hard time selling the idea of peace and quiet to him. A family member will usually be allowed to stay in a facility with their loved one and of course there is unrestricted visiting.
I am in two minds about preventing Mom from seeing Dad. Reasoning with her of course is out of the question and he is her life partner however unhealthy the relationship has been.
I don't think she should be given unlimited access and be allowed to do anything she wants.
Severey limit Mom's access and have two others in the room or just outside the door. As soon as she starts her chenanigans simply remove her. Forcibly removing her can be seen by some as elder abuse but on the other hand you are protecting another vulnerable adult - Dad. If she is allowed to do things like pouring water down his throat she could actually kill him.
Are the round the clock medications being given to Dad or Mom? If Dad is actively dying conventional medications are not necessary and hospice will usually recomend they be discontinued. The relief of current symptoms is the priority. High blood pressure and cholesterol are no longer important in someone who is dying. Pain, anxiety and the relief of any other symptoms should come first.
Try and get out of the house for a few hours so you can think clearly about how you want to proceed and then discuss with your hospice team about the containment of Mom going forward. It is impossible to give specific advice unless someone is on the ground actually observing the patient. Your hospice nurse is right there and observing the behavior so be guided by her team. No one appreciates someone second guessing a professional but asking questions and making sugestions is fine. You will get through this.

J JimL1953 Sep 2017 · Answer 30 · 2017-09-17T07:18:04.000-0400

Yes the doctor gave us a med. she hates me right now telling anyone who will listen I won't let her see her husband. I am doing what our Hospice nurses are telling me to do. They have all said the more upsetting the environment around my dad the longer it will take for him to pass and it will be harder. The minute my mother enters the room she starts loudly wailing away and you can immediately see how it affects my dad. My daughter has been sitting with her most of each day attempting to reason with her. It kind of all came out yesterday when she said nobody is paying attention to me. My mom has ruled the roost so to speak with my dad allowing her to have her way most of the time. My focus has been on my dad as I take care of the list of needs left by the nurses. The med schedule is overwhelming with various drugs being given alone and in combinations around the clock. It is daunting. My mom won't talk to me at all now so I have that pressure too. It got to me last night and I broke down. I hate to admit that as I am normally one to hold in my emotions. From raging headaches,weight loss, crohns flare up, not eating or sleeping for days , and what my mother said to me yesterday it just got me. My dad is in the active phase of death and the nurses have said very soon if his environment stays calm.

The Caregiver... How are YOU doing today?

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