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.
Well, today, dad received a letter from Medicare. Obviously, his retirement stopped payment but didn't alert Medicare that he died. So, Medicare is coming after dad for his Oct-Dec payments. I texted SIL that since the retirement didn't alert Medicare, then bro-as administrator - needs to contact Medicare to cancel it... Oh by the way, if they didn't cancel Medicare, that also means they didn't cancel dad's secondary insurance.
I just spoke to SIL. She asked me why I haven't sent out the retirement form back to them with dad's death certificate. I said that I spoke to her in Aug 31st that I NEEDED the document from the administrator to send it along. She says I don't need that. She said that I need the form for the insurance beneficiary but not to close the retirement account (which only needs the death certificate). Ugh!!!! It's almost 15 days later and their lawyer is sooooo slow!!!! The administrator paperwork hasn't gone to court yet....
Not my problem. It's the administrator's... I keep telling myself this. But, I'm still stressing over it!
SIL asked about dad's bank account. I said that I haven't touched it after I gave their lawyer dad's bank account number. She said that I should just check it. Nope! That d*rn retirement form mentioned that we're not suppose to touch money from a deceased person's account - even if my name is on it. I ain't messing around with the feds....
It is my understanding and how we have dealt with it here is if anything like pensions, retirements, life insurance polices have a named beneficiary that can be dealt with and settled before you go to probate court. Usually there is a form the beneficiary fills out. You send that form in along with the Death Certificate and the Insurance, retirements will settle up with you in 2-3 weeks. Sometimes the form you fill out and sign as beneficiary will need to be notarized.
Calling an attorney with your questions as a beneficiary is a really good idea. Getting a short consultation in the attorneys office is even better.
I just found this website and forum. Not sure if this is the right place to start posting? Just needed to vent. My husband and I are caring for my father-in-law who has Stage 4 cancer. He's living with us, but because we have limited space, his bed is in our one family room/dining room area. He's fine with it, but it means the only space that is my own is our bedroom. We have no other family here to help, it's just us. I'm losing my mind!!! We work from home, which is a double edged sword - it means we can care for Dad, but there's also no escape. I'm sooo tired. We have hired help to come a couple of nights a week (he doesn't qualify for hospice yet because he wants to do immunotherapy), but we can't afford daily help.
I'm also angry today. Sorry, I just am. I have tried to be a really good friend to my friends over the years, and have always helped them out when they're in crisis. But where are my friends now? Nowhere. Silent. Crickets. I finally called one friend last night out of desperation, just needing some emotional support. All I got was 45 minutes of her questioning what we're doing...."Well, have you tried this? Well, can you do this?..." Over and over. I don't need someone to tell me what I already know or how to do things differently (that won't work cuz we've already tried), I just needed someone to be a friend and say, "I know it's hard. I'm sorry. I'm here if you want to cry." Last night I had nightmares, hearing voices that actually woke me up. Good times. I love my father-in-law dearly, but this is just really hard.
Anyway, thanks for just being a place to vent!
Will be reading your posts. I hear you, being close to burnout, needing a friend, or two, or three. You are not alone, some are posting throughout the day and into the night in different time zones. You will like it here, I hope.
Have you ever been to a caregiver support group, often held at your local senior center?
I used to also attend our monthly caregiver's meeting. We learned from each other's stories, and they even set up lawyers, Medicare, etc.. to educate us about POA, etc... So, they will also be a good source of information for you. Also, ask around your fellow caregivers... I was able to tell some of my fellow caregivers about where to buy inexpensive but strong washable waterproof bedpads. On island, one pad cost $25.00! In Amazon, I get buy a set of 3 for $25.00 + shipping.... I also told them that using those cheap blue liners when changing a bedridden person is lousy! The pee just rolls right off it, and onto the bed. I recommended using the puppy liners. It's about the same size but it absorbs the urine while you're changing the pamper...
Based on her advice to send it out today, I think I might be very close to the deadline. She gave me the name of the person handling dad's case. I called and her voicemail came on. She's on a 2 weeks training. In truth, I'm in no hurry. As long as I don't lose out. I will view that money as my future emergency money.
Hmmm... I'm going to call the life insurance. See if they will accept a copy of the passport instead of the birth certificate. I'm willing to throw in a copy of my valid driver's license and my work ID.
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.
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.
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}}}}
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.
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.
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?
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!