Caregivers’ chat

I have to admit, I’m a little annoyed.

I have five siblings; four brothers and a sister, as I’ve detailed before. We have an ongoing “brothers’ chat” - sister didn’t like all the pecker jokes, so she dropped a long time ago. :laugh:

Anyway, my dad’s birthday was yesterday (86). He has severe dementia, as does my mom. They live together in a care facility. Dad is pretty much non-communicative, Mom lives somewhere about 300 light years from Mars - she’s in la-la land most days.

I live 75 minutes away, by car. I work full-time, 60-70 hours a week, and hours are spread out around the clock. I’ve worked four hours today, for example, Saturday, a day off.

I have a wife to look after, and she’s not 100% incapacitated, but she has myositis (in remission), and she’s a stroke survivor (which I’ve mentioned before). She needs help with one thing or another every day.

Those are my two priorities - work (because they pay our bills and provide our health insurance) and MrsT, because she’s my wife. Period. End of.

Yesterday, everyone was talking about my dad and his birthday on the chat. Two of my brothers and my sister went over, at different times. The facility had a little cake and ice cream for him.

I thanked everyone for the couple of photos they posted, and the details, and mentioned that I sent a card.

Bro #3 responded with, “Instead of a card, maybe you should come over and actually see them” - and he included a pic he took of just my dad, shot from the back, wheeling himself down the hallway - it was a long shot, just my dad in it, florescent lighting, meant to look incredibly sad and lonely (which it did).

Here’s the kicker:

1. He’s retired, I’m not.

2. I responded with with my work schedule this weekend:

Fri - 9AM-6PM, 10PM-whenever (10:45PM)
Sat - 1AM-3AM, 4AM-5AM, 6AM-9AM, 2PM-3PM, 10PM-whenever
Sun - off unless I get called
Mon - 1:30AM-3:30AM, 9AM-6PM

That’s my weekend! I also work a full 40-hour shift Mon-Fri!

3. The bit that really chaps my ass - two years ago, when my oldest brother needed some extra help getting my mom to a couple of appointments, Bro #3 was asked to help out a bit, and he refused, saying that he was just retired and he felt he earned his time off and he was going to spend it the way he wanted, on him and his wife…and I stuck up for him!

I’m a big believer in the “You get one life, spend it how you want” philosophy - and I took his side two years ago (I was the only one who did, BTW), and now he’s busting my chops in front of everyone, calling me out for not going over enough, when he lives literally eight minutes from where my folks are! Eight. Minutes. EIGHT!

And he’s retired, as is his wife!

We both work, MrsT drives only locally, so I drive her a lot of places. I go to all her docs’ appointments. I do the cooking and cleaning. He doesn’t do any of that.

I made my peace a long time ago with my folks. When it became apparent that my dad was slipping, I sat down, one on one, and we had a good long talk about things, and he knew then at least, how I felt about him and all that. Nothing was left unsaid. Granted, I’m sure he’s forgotten it all since then, but at least it was done. There’s never been much hidden between me and my mom.

Nowadays, I fairly certain they don’t know me when they see me. I’m just someone stopping by. The last few times, my dad’s been asleep. Right or wrong, I came to terms with it a few years ago, and in a way, in my mind, the parents I knew have sort of passed away. I’m thrilled they get good care, and that four of their six kids live 10 minutes or less away, so they’re being cared for and looked after. I don’t really need to go over more than I do, which is three or four times a year…which is about the number of times I’ve averaged since moving back here 20 years ago.

Rant over, but damn if I’m not annoyed up to my back teeth right now! 😠
 
TastyReuben said:
I have to admit, I’m a little annoyed.

I have five siblings; four brothers and a sister, as I’ve detailed before. We have an ongoing “brothers’ chat” - sister didn’t like all the pecker jokes, so she dropped a long time ago. :laugh:

Anyway, my dad’s birthday was yesterday (86). He has severe dementia, as does my mom. They live together in a care facility. Dad is pretty much non-communicative, Mom lives somewhere about 300 light years from Mars - she’s in la-la land most days.

I live 75 minutes away, by car. I work full-time, 60-70 hours a week, and hours are spread out around the clock. I’ve worked four hours today, for example, Saturday, a day off.

I have a wife to look after, and she’s not 100% incapacitated, but she has myositis (in remission), and she’s a stroke survivor (which I’ve mentioned before). She needs help with one thing or another every day.

Those are my two priorities - work (because they pay our bills and provide our health insurance) and MrsT, because she’s my wife. Period. End of.

Yesterday, everyone was talking about my dad and his birthday on the chat. Two of my brothers and my sister went over, at different times. The facility had a little cake and ice cream for him.

I thanked everyone for the couple of photos they posted, and the details, and mentioned that I sent a card.

Bro #3 responded with, “Instead of a card, maybe you should come over and actually see them” - and he included a pic he took of just my dad, shot from the back, wheeling himself down the hallway - it was a long shot, just my dad in it, florescent lighting, meant to look incredibly sad and lonely (which it did).

Here’s the kicker:

1. He’s retired, I’m not.

2. I responded with with my work schedule this weekend:

Fri - 9AM-6PM, 10PM-whenever (10:45PM)
Sat - 1AM-3AM, 4AM-5AM, 6AM-9AM, 2PM-3PM, 10PM-whenever
Sun - off unless I get called
Mon - 1:30AM-3:30AM, 9AM-6PM

That’s my weekend! I also work a full 40-hour shift Mon-Fri!

3. The bit that really chaps my ass - two years ago, when my oldest brother needed some extra help getting my mom to a couple of appointments, Bro #3 was asked to help out a bit, and he refused, saying that he was just retired and he felt he earned his time off and he was going to spend it the way he wanted, on him and his wife…and I stuck up for him!

I’m a big believer in the “You get one life, spend it how you want” philosophy - and I took his side two years ago (I was the only one who did, BTW), and now he’s busting my chops in front of everyone, calling me out for not going over enough, when he lives literally eight minutes from where my folks are! Eight. Minutes. EIGHT!

And he’s retired, as is his wife!

We both work, MrsT drives only locally, so I drive her a lot of places. I go to all her docs’ appointments. I do the cooking and cleaning. He doesn’t do any of that.

I made my peace a long time ago with my folks. When it became apparent that my dad was slipping, I sat down, one on one, and we had a good long talk about things, and he knew then at least, how I felt about him and all that. Nothing was left unsaid. Granted, I’m sure he’s forgotten it all since then, but at least it was done. There’s never been much hidden between me and my mom.

Nowadays, I fairly certain they don’t know me when they see me. I’m just someone stopping by. The last few times, my dad’s been asleep. Right or wrong, I came to terms with it a few years ago, and in a way, in my mind, the parents I knew have sort of passed away. I’m thrilled they get good care, and that four of their six kids live 10 minutes or less away, so they’re being cared for and looked after. I don’t really need to go over more than I do, which is three or four times a year…which is about the number of times I’ve averaged since moving back here 20 years ago.

Rant over, but damn if I’m not annoyed up to my back teeth right now! 😠
Click to expand...
I understand with personal experience. While my wife's dementia is mild her disability from the stroke is severe. She can't talk, or walk or use her right hand. She can't visit the bathroom or get clothed or bathed without my help. She can only communicate with head nods, pointing and an occasional yes or no to an asked question. It eats up a great amount of time. So my life is upside down. I do everything she used to do as well as everything I used to do as well as operating my small business which is dying from inadequate management. At least she eats well! Care giving is tough. No doubt about it. I don't recommend it if it is optional.
 
blades said:
I understand with personal experience.
Click to expand...
I’m sorry about what both of you are going through, and I do feel lucky that MrsT can do most things most days, so my caregiving responsibilities aren’t nearly what yours are…but they’re constant, basically managing her day (making sure she eats, takes her meds, goes to her appointments, occasionally helping with dressing, in and out of the tub, that sort of thing).

Part of my issue with a couple of people in my family is that we don’t live over there (until one moved to another state, all my siblings lived within 10 minutes of each other - three live on the same street and can see each others’ houses from their respective yards), so they don’t really see what our lives over here are like, and then assumptions get made and all that.

Your wife is lucky she has you looking after her! :)
 
blades said:
At least she eats well! Care giving is tough. No doubt about it. I don't recommend it if it is optional.
Click to expand...
Isn't it part of life in most societies? You have to care for others and usually work as long as possible to earn some caring after retiring. I'm always baffled on what you guys are doing for your loved ones and I hope I can be as strong as you guys when my mother's health is getting worse.
 
PabloLerntKochen said:
Isn't it part of life in most societies? You have to care for others and usually work as long as possible to earn some caring after retiring. I'm always baffled on what you guys are doing for your loved ones and I hope I can be as strong as you guys when my mother's health is getting worse.
Click to expand...
I think it's like being a parent at times. you can read all the books, literature you like; you can watch videos, visit specialists, talk to psychiatrists... and absolutely nothing prepares you for the real thing, except when you're stuck there and say to yourself "...and now what do I do???"
 
This is my first visit to this thread. My heart goes out to all of you.
Mother is 92. Her health is remarkably good for someone her age. She has dementia. In the last 18 months she has deteriorated greatly. Fortunately, she does not fight us. If she needs a shower she complies. She wears the same clothes for days on end. Mom you need to change clothes. Ok. Will you wash my clothes? Always sweet. Always easy to work with.
She knows her family. Her long-term memory is remarkable. It takes little encouragement to get her talking about her childhood or how she met Dad or family history. She does not remember what she is told 10 minutes ago. She is zoned out most of the time. That hurts my heart.
I am blessed with a loving family. I am the eldest. I have five living siblings. Four of us live near Mother. Two brothers live in Colorado. Our focus is Mother. Last year my middle brother spent three months remolding Mother's house to make an accessible bathroom. The project grew. Two other bathrooms had to be redone. Mother's bedroom and youngest brother's bedroom had to be reconfigured.
Mother is living in her house because my youngest brother and his daughter live with her. I do not know how much longer she can remain at home. We - the three sisters - visit frequently, do her laundry, shower her, take her to Dr. appointments, arrange for in home therapy. I have an issue with Brother and his eighteen-year-old daughter. They are slobs. We clean Mother's bedroom, bathroom and living room where she spends her days. The rest of the house is disgusting.
Mother likes Sudoku puzzles. She also jots down thoughts on scrap piece of paper or in the back of her puzzle book. in one of her notes, she wrote about a dream of taking a cross country train trip. Baby Sister jumped on that. Sis has arranged a train trip from New Orleans to Washington D.C. An overnight train trip each way with two nights in D.C. Sis gave Mom a small model train to remind her of her trip. She forgets about her trip until she is shown the model train. Her face lights up and she says "I am going on a train trip"
Aging parents are a heartbreak. I never thought I would see my dear Mother like this. She is like a child. Her focus is food and immediate gratification. If she is not eating, she is zoned out.
I am so grateful to have my Mother alive. We - the family - will do all we can to keep her comfortable. She is the rock of our family. Her friends say, "Oh you are so good to your Mother." I say we cannot do enough for her. She had a hard life. She sacrificed for her children. We can never do enough to repay her.
 
Craig and I had regular check ups at our general/primary card physician recently. I go in with him because he will say everything is fine because he hates admitting anything is wrong and also because his memory has become so spotty. So, he usually stays for my visit also. This time, however, he was uncomfortable because the chair he was in was making his back hurt so he went out to the waiting room.

Since Craig wasn't present, doc and I had a more involved discussion about him initiated by the doc, and also about the frustrations experienced by me. Doc suggested I read a book called The 36 Hour Day. It's for caregivers for people with Alzheimers and other dementias. I haven't gotten it yet but intend to because the situation is getting to me more and more, and is showing in my health.
 
medtran49 said:
Doc suggested I read a book called The 36 Hour Day.
Click to expand...
Hopefully, that book will help with managing things, and maybe just reading it and seeing things that you’re going through in print will help, idk.

If I may ask, and apologies if this is out of line, but do you foresee a time when Craig is going to require some additional care, either in-home or in a care facility? Again, sorry if that’s too personal and you don’t want to answer, I’m just trying to understand what the near future may be like for you both.
 
TastyReuben said:
If I may ask, and apologies if this is out of line, but do you foresee a time when Craig is going to require some additional care, either in-home or in a care facility? Again, sorry if that’s too personal and you don’t want to answer, I’m just trying to understand what the near future may be like for you both.
Click to expand...

Probably not any time in the near future as long as he continues as is and nothing happens to me. He's more or less fine as long as nothing out of the ordinary is happening. He forgets some things, but remembers others. I never know what he's going to remember so have to remind him about everything, even his day to day chores once it's later in the day and he hasn't done them yet, which irritates him and causes a fuss more often than not.

My rearranging and organizing things have thrown him off as far as pantry and freezer wise. He still can't remember where we moved some things when we had to rearrange when the Tovala oven came, and that's been over a month now.

He has little to no sense of space around him. I can't tell you how many times people have had to stop short because he will walk right into their crossing path. He'll stand in the middle of the aisle in the grocery and I have to tell him to move. His peripheral vision on the left and depth perception were badly affected by the stroke. The depth perception mostly came back, but very little of the left peripheral vision did, which is another reason I don't want him driving, besides the episodes of where he has gotten lost a few times. When something is out of my reach, since I use a cart because of my knees, in the grocery, I have to count the shelves up or down for him, then count from left or right and more often than not give him color cues so he can find the item. Even then, he still has problems finding things. Something can be right at eye level, literally right in front of him, and he won't be able to find it without a lot of direction. For example, we were getting some flavored cream cheese out of the cold case today and I counted down from the top and told him the 1 at the far left. He took his finger and pointed at the mirrored side of the case, actually touching the mirror, and asked "this one?" but didn't realize he was touching the mirror.

His Id is very prominent. If he wants something, he wants it now and it doesn't matter if it inconveniences someone else or now isn't possible. He's like a toddler in a lot of ways. I have to get my food first or specifically tell him that I want some of whatever, or he will take all of it if it's something he really likes. He no longer knows what common courtesy is anymore, it apparently just doesn't enter his brain that maybe he shouldn't act like he does sometimes; yet, still opens doors for and waves me and other people to go ahead of him.

If something goes wrong in a situation or if he has the slightest bit of trouble with something, he just explodes, and i do mean explodes, even if it's a tiny thing. It's gotten to where I hate to ask him to do anything anymore but there are some things I can't do and God forbid we pay somebody to do them because it's something he can do, or at least thinks he can do still. TBH, he still has been able to do the little jobs around the house that I can't, but the neighbors and I have to listen to his outbursts.

He used to make his pill boxes each week, but I now have to do that as well because the last couple of times I spot checked him, he hadn't done them correctly. He pretty much remembers to take his morning pills, but I have to remind him to take his nighttime pills and also a liquid medicine he takes to keep him from forming kidney stones.

He's become a complete dichotomy of a person and I never know what I'm going to get. So, I'm either irritated, frustrated, or just plain angry the vast majority of the time and it's affecting me. My blood pressure that has been stable and very well controlled on the same med for the last 15 years or so no longer is and doc put me on a different med this last visit since it was also elevated 3 months ago.

He'll just keep getting slowly worse over time until he only does what he is happiest doing now, sitting in front of a TV and taking the occasional nap.
 
medtran49
My heart goes out to you. We began to notice Mother's dementia about 5 years ago - little things, repeating herself, not remembering what we tell her. Four years ago my nephew was killed in a car accident. He was Mother's first grandchild and her only grandson. She slid a little deeper into dementia. Not a nose dive, just more little things. She went to her local market and could not find her car. It was in front of the door. She got scared. The owner saw her walking back and forth with her grocery bags. He helped her find her car and called my brother. We sat down with her and discussed the possibility that she should not drive. Without argument she quit driving. A year ago she was doing things for herself, showering, washing her clothes, cleaning her spaces.
She no longer does those things. We started filling her pill box. Middle Sister calls her morning and evening to remind her to take her pills. She started talking her evening pills at random times of the day. Brother bought a locked auto dispenser. She managed to pry it open. Now my brother fills her pill box and keeps it in his locked bedroom. When he is home he dispenses her meds. If he is out of town one of the sisters will be with her and give her meds.
She has become incontinent. We supplied her with depends. She would not wear them. Baby Sister took her panties out of the house and filled her underwear drawer with depends. With no reaction she started using depends.
With Brother living with her in her home and the 3 sisters near by she has been able to stay in her home longer than she would have with only one caregiver.
I will order the book. If I find it helpful I will get copies for the siblings. 🙏🙏
My heart really goes out to you. You are carrying a heavy burden.
 
medtran49 Craig sounds alot like my MIL, who passed from the complications of Alzheimer's - she was pretty much manageable by the extended family until one day she became very violent - my Dearest Husband was tasked by his other siblings to take her (physically) to a care facility. He was the only one who could actually physically handle her - she was very violent and he's a BIG guy - this broke his heart and could never go back there to visit.
 
You must log in or register to reply here.
Back
Top Bottom