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.
My dad's needs are very simple. The gov't caregivers give him sponge baths but they do not do haircuts or shaving. For my respite workers, all he wants is for them to shave him once a week and light massages on his legs. That's it.
So, my question to you is - what was told to you about the duties of the respite worker? It could be that what you think is their duties may be in conflict of what they think is their duties. But, I think that if they touch something, they should clean up after themselves or your mom while on duty. When the gov't caregivers sponge bath dad, they're suppose to put the load in the washer. But sis and I always do it instead of them - our choice. They ONLY mop the area around my dad's bed - Not the whole livingroom floor. Again, your expectations vs. their policy.
I only have one for 6 hours a week 3 on tues 3 on fri mostly to give mom a bed bath , lunch (that I set up) maybe change sheets , fold a basket of clothes or unload the dish washer . cant be all that hard moms sleeps a lot .. but I have come home to un wiped table where mom eats, debris in the sink or moms lunch dishes, my dishes put away in any which way (bowls and dishes an glasses) its a small kitchen pretty clear on where stuff goes!!! if she does vacuum its just the front rug, never wipes off counter, even asked to just lets just say to put moms clothes in some kind of order in 2 freaking drawers , (nightgowns were with socks , pants with pull ups etc, its like she just threw them in there !!! lets just say I that I come home to more work than I left .
last week I had to put all 6 of my hours together to go see my daughter a 2 hr drive 2 with my daughter 2 hr drive home ],, I had to set up lunch and dinner and dogs dinner ,, came home to dishes not put away, no vacuuming , her soda can on the mantle and 2 of moms pre made dinners gone from freezer * and I know the aide brought her own ) I have no problem her finding a snack for herself but !!!! I made those for my own convince for my week nights.
she takes no self charge to do just the common things,,
I worked my self doing homemakers and companions while looking for a full time after I lost my job had no clue id be living it soon after,,, BUT I would never leave dishes in the sink for a tired family member to come home to ,,,
not to mention she is always late!!!! I understand things happen but twice I had made appts one I had to cancel so there went my mammogram. until ???????? and the day I came home from seeing my daughter my heat was up to 85 !! there went my last few gallons of oil, and all the lights on and the tv going I left a note asking to leave on the front porch lights, and living room light and lock the front door * id be home about an hour after sheleft cause of travel time ),,,, I finally complained and asked the agency t find a replacement but they don't have any one in my area,,,, its just not working,,, she does take care of mom but I know mom sleeps a lot and I cant imagine that a sponge bath takes 3 hrs,, I think judge judge is more important than my dishes in the cupboards
now im trying to find some help for the 3 days I have to leave house overnight fior my daughters graduation ????? how am I going to go and relax and enjoy the special day away
Sorry, I missed you post about difficulties with Dad a few days ago. Been wrapped up in the latest here.
Veronica, I want to talk to talk to her to set up guidelines. If she cannot follow these guidelines, then I will make a formal complaint to her work. SHE was the one who reported me to the social worker. And the social worker asked me why this and that with dad, etc.. I thought that odd cg should have approached me to ask me before reporting me. I was quite upset and emailed back the social worker that I would be happy to set up an appointment with her, dad and his home nurse and hash out all these 'itemizations'. She was satisfied without having to do that.
I know that I should do tit for tat. Just as odd cg reported me without asking me, I should do the same to the same social worker. But my conscience is getting in the way. Problem is that odd cg only visits when I'm at work.
Something happened today. I came home and dad was upset with me. He ordered me to stop telling oldest bro about what's happening here in the house. It is none of my brother's business. Just as it is none of my business what he does with his money. I told him straight out that I will continue to tell bro what's happening because when I move out, he will be taking over.
I'm on a new mission. I will spending the next few hours googling acid reflux/GERD. With the stress and all these meds I've been taking, I think it has exacerbated my acid reflux. It seems to get really bad every time I take the prevention headache meds Maxalt-MLT. I'm getting really bad burning tongue, lips and upper roof of my mouth, burning throat. That's the only new thing that I've been taking the past week - the same the acid reflux really jumped up. I've made an appointment for this with my doc on 30Mar. My clinic's regular hours are only Monday-Friday. After hours and weekends are urgent care. I've heard that when you go to urgent care, they tell you to follow up with your doctor.
How is dad going to get to the bank to take your name off the account? Can you just say "No"? or is that too bold in your culture?
The odd caregiver was suppose to come today. I was going to talk to her about accepting money from dad and receipts. If she continues to accept large amounts of money, I will file a complaint to her work. She is My Respite caregiver (not dad's) from a national organization. If this doesn't work, I may need to do a visit at the APS and see what options I have. Then go to a lawyer.
I will be very nervous. I won't remember much of what is discussed. I will need to bring someone with me. I tend to block very unpleasant memories. Gynecologist said that he thought I have ovarian cancer, I went into shock. After that diagnosis, all following visits, doc called the cancer 'complications.' In my mind, 'complications' became severe endometriosis. I completely forgot about the cancer until SIL dropped by and was shocked when the medical referral agent said that I was flying to Hawaii to the women/children cancer hospital. I completely forgot about the cancer. My mind wiped it off completely and replaced it with endometriosis. So, when I get stressed, my mind shuts down and I run on automatic.
It's still too soon to try for guardianship. Don't even think POA yet.
This is the only control he has left so he takes out all his frustrations on you. He know full well you are a very good daughter whatever he says to the contary. Sleep well.
I've sent a text to SIL that we need to meet and discuss this. We need to find the day to take dad to the bank to take my name out, and then I will move out. So we need to figure out how/who to replace my name in dad's account or apply for an ATM card. Who's going to help oldest sis take care of him, etc....
Strange... my super sensitive conscience is not acting up. I guess I've finally reached the end of my rope. Can't really Honor your parents if the parent no longer trusts you, and is fighting you, etc....
I feel so sorry for him. When I move out, none of the family will take care of him the way I do. I've been doing this close to 24 years with mom. I know the signs of potential bedsores and attack aggressively. I know when he's having allergic reactions to his herbal supplements and have been doing subterfuge to cut back on it. My family, even oldest sis, will not care. They won't think 'prevention.' I would come home at 630pm, and dad is soaking wet because he spilled his drink all over him, the bedding and onto the floor. Yet oldest sis did nothing. When I changed his pamper at 9pm, I found his shirt, bedding were soaking wet. I couldn't believe it. I guess it doesn't matter that he's soaking wet in an air con room, that he might get pneumonia, etc.. I guess their attitude is - If he dies, he dies. Like he said tonight, I'm a bad daughter. The daughter who makes sure he's clean, his bedding is clean, his table is clean, his floor is clean.... If I'm a bad daughter, I wonder what he's going to think of the relatives when they take over. I'm tired. I will need to remember to buy newspapers daily to look for an apartment to rent.
Bought Dad some Easter decor for his room and made a wreath this morning.
It's like a competition who can change the holiday decor the fastest.
Hi, Kroger. When I drink water, it upsets my stomach. If I drink water without food, I get stomach pain. I have a feeling I might have ulcer since I tend to be starving by 4pm but get off work at 6pm. Chimonger gave some great information.
Chimonger, thanks for the info. I like the info about the thickening agent.
===Is she having any difficulty swallowing?
===Is she afraid she might lose continence if she drinks enough fluids?
===Does she like healthy things, or novel things?
Absolutely, water is best for rehydrating.
===But if the water at your house is like the water at our house, it's nasty Municipal water loaded with chlorine, etc. chemicals--which leaves one feeling more thirsty than they started out.
If problem swallowing, might consider a thickening agent--just enough to make it more like a full-liquid, like a thickened soup? There are thickening agents available, that come as a powder and sprinkle into the drink.
This helps anyone with swallowing difficulties.
Flavoring can be helpful, too.
I'm the LAST person to advise artificial flavoring and coloring, but, maybe those Mio water flavors might help? I've seen them at Walmart [no fan of them, either, but hey--sometimes, ya gotta.]
If she is afraid of peeing herself, but is given water thickened with chia seeds, for instance, it can be a bit more jelled, and, can have flavor added.
Coconut water is superb for giving elders or anyone at risk for dehydration, the electrolytes they need. It can also be flavored, to entice someone to drink more of it. Chia seeds are NOT probably a good idea, for people with dentures though.
OTH, chia seeds add nutritional intake which is very good, AND, help keep the bowels softly moving nicely.
For nasty Muni-water, we checked with our district, learned they only add chlorine, no Fluoride, and no Chloramines.
Therefore, we can use the KDF + charcoal shower filters, and, a solid-carbon block charcoal filter for the drinking and cooking water.
Voila', far better flavor, and far less caustic on the skin.
We're at a new location; theoretically, we only need to change these every 4 to 6 months...I'm thinking quarterly.
IF one has fluoride in the water, that requires a special filter to remove.
IF there are Chloramines in the water, that also requires a special filter to remove.
I went online, I think it was US filters, and ordered a countertop housing with a spigot, that hooks to the faucet.
They also have under-sink units.
I ordered the most common-size carbon block filters, to make sure we can always find one to fit, even from most stores that carry water filters. [2" x 10"--these are slightly less than those dimensions, but close]
They will try to sell you some massively more expensive units...but 1st check your water department, to learn what is actually in your water.....you might have to call a few times, to get the real deal.
It's worth it!
FINALLY...
If the patient is complaining that water hurts her stomach, more questions might need asked...like, to localize where it actually hurts her, for instance.
What temperatures of food or drink sooth it or make it worse?
You can't really "reason" or be logical with a dementia patient.
But sometimes, at some stages, you might try telling them that if they don't drink enough water, they might get a UTI--those hurt worse.
Keep telling them to drink the fluids, to prevent UTI's. Some of it might sink in, some of the time.
IF they are fearful of peeing themselves, maybe help them with a panty liner product for incontinence, or, make sure to take them to the potty more often, to help or remind them...sometimes they just forget, or, get busy [in their heads] thinking other things, and get distracted from paying attention to body needs---kinda like little kids.
IF she is also not eating much, THAT can cause stomach pain in some, which feels like if they put something else into the stomach, it might make it hurt worse---but it can actually help relieve that ache...especially if they sip it. That can be a nuisance, to remind or assist someone to drink something every 15 minutes or so, but sometimes, ya gotta do that.
OR, try serving it warm, maybe with a squirt of lemon or lime juice into it.
Temperature of the water for some, needs to be warm, while temperature for others, needs to be room temp or chilled.
This can change over time.
Keep working at it. You are aware and know she needs fluids...that's half the battle! Keep up the good work!