Caregivers
 

Mom is now here in my house full time. The contractor's are building her an addition to my house. Things are going okay mostly but I have lost some freedom and that is painful. We are working on the fact that I don't eat dinner. That is hard on mom but she is trying.

The hardest part for me is that I have lost my alone time. I need that time to relax and gear up for the next day. My work days are harsh with folks in my face all day so I need some alone time at night. Mom and I have settled on one Perry Mason and then we go to our bedrooms. That is okay for now. I am a loner so this is not easy for me.

I took care of my mom for almost 8 months then I was promoted and had to move she chose not to go with me but one of my brothers. I am not sure what happened but she was there 6 months then they made a decision to take her back home to live alone. We are 4 months in and she is doing ok. I’m thankful for that however now things have changed for me and I don’t know what that means for her.

I don’t trust either of my brothers to take care of her if I am unable too. I don’t know if I should address it now while it is still fresh for me and them.

I can only imagine how the conversation would go. It will be short however I know it won’t resolve anything.

I know some will say I’m worrying about something I shouldn’t. I’m a fixer and a planner and to me I need to make sure this is settled.

Caregivers
 

2.5 months of living with mom. It is going well but it will be better once her suit is finished. We have had so much rain in central Texas that construction is a month behind schedule. The issues for mom have been lonely days and my eating schedule. I eat a good breakfast and lunch but no dinner. Mom likes 3 meals a day so it is a challenge for us.

On work days I get home around 6 pm so we spend 2 hours together and separate at 8 pm after Perry Mason that gives me about 2 hours of alone time which I need to rest and recharge. On weekends I take mom out for some fun and shopping. I think she looks forward to it. She gets to dress up and make herself pretty for the day. After all she is a southern lady.

This is good practice for me because I have never been happy living with other humans. Knowing now how important that alone time is was a learning moment.

Chad your post is refreshing ~ family should be there for each other if it works out that way. your mom is lucky to have you and your obvious insight into family unity :)

Thank you Ocean.
My mom is a good kind lady. I respect her and I am grateful to her for my good life.

Second overnight visit with my kiddo. Both the kids were here for about 7 hours. My oldest was completely overwhelmed and my anxiety was higher worrying about them both.

One meltdown this visit. Another visit in two weeks. I hope things get easier.

Caregivers
 

Well my work travel is ramping up for the next couple of months. I am grateful that my cousin is here to help with mom while I am traveling the south.

Mom's suit should be finished next week and we will finally have my house back in order so yay!

I am feeling like my world is not my own of late. My father has been in poor health for a while, but its getting worse, so I have been doing my best to help my mother care for him. He is argumentative and sometimes downright mean to her. I have been going to his appointments with her just so someone is there to stand up to him.

Between my dad and my kiddo... I am gone every day of the week lately, and never home till after dinner time. And that leaves my oldest to fend for herself and I am worried about what that will do to her in the long run.

Just keep swimming, I tell myself...

My daughter had to compete with my sick and dying mom for attention during her teens...she did not have to deal with a sibling who needed so much as well. However, if she knows she is loved, if you take a small moment to connect with her everyday, she will be fine. Children are resilient, and learn about sacrifice and family duty from us; in the end, it makes them stronger adults.

My thoughts and prayers are with you. (f)

Caregivers
 

I am happy to report that mom's new suit on my house is finished. I will set it up this weekend.

I am setting her up with local doctors and that is time consuming but I seem to be successful so far.

I have noticed that she gets confused a bit so I am keeping an eye on that and will bring it up to her doctor.

I think she is happy here but does get lonely because I travel for business so much.

My nearby relatives are a big help.

I feel like moving her to my house was the best choice for us.

Thank you to my BFP family for your support.

Chad

When I saw my mom last weekend, I noticed she hadn't taken her pills for the day. I asked her about it, and she said she forgot. Then she said she forgets all the time. I asked her which ones did she forget? and she showed me all of her medications, including the stapled-together sheaf of prescription labels and patient notes that come with the prescriptions. I was surprised - it wasn't that many, only 3. Or maybe 4?!!

She had gotten two different prescriptions filled within days of each other, that didn't sound to me like they should be taken together. (They both contained HCTZ.) Of course, I don't know for sure, and I'm no medical professional. I asked her, "Did the doctor change one of your prescriptions?" "I'm not sure," she replied. "I don't think so."

So I wrote everything down for myself, and then I wrote two questions for her to call the doctor and ask on Monday morning. I made sure she understood the questions, and why she was asking. Of course, I know, when people have memory problems, that goes right in one ear and out the other. But I hoped that the way I phrased the questions would be simple, clear and help her remember.

So I called her Monday night and asked her what the doctor said. She very patiently explained to me that she was going to wait until her doctor's appointment the first week in December to ask, but thank you very much for worrying about her, and she would be fine, etc. Essentially, she told me to mind my own business.

My mother still lives on her own. She drives and goes places on her own. She keeps up with her appointments (mostly) by writing them on a calendar. Her memory is not so bad that I would come down hard on her and insist. I also wouldn't call the doctor behind her back - at this point. So I just asked her if she was sure ("Of course," she said,) and I let it go.

It's so hard to walk this tightrope of do I? or don't I? I don't want to fight a losing battle with her. I don't want to fight with her at all. Do I tell my sister or not? Probably I will, if Mom doesn't get those questions answered at her doctor's appointment. I'm constantly second-guessing myself, wondering, "Is this the time to push an issue?" "Has she deteriorated to the point that someone needs to monitor her more closely?"

I have no conclusion to this, just constant worry.

Speaking of moms
 

Caregivers
 

Well, living with mom has been a bit of a challenge. I am just not good at living with other humans. All my bad habits from being unhappy return.

The biggest issue for her is still the fact that I don't eat very much. She likes her three meals a day.

At Christmas I heard her complain to her brother that I am gone a lot and that I don't eat. Ugh, I always make sure that she has home cooked food to eat even when I don't join her.

Yesterday, we went to her old town to empty another rented storage bin. Since it is only me moving stuff it makes me very upset to move around what I consider junk. We are down from 5 rented storage bins to 3. But my body suffers from the work and again there is no one to help me.

I feel exhausted and a little hopeless about her stuff.

Its so refreshing to read everyone's stories. I was a caregiver for the mentally challenges for over 5 years. I love it and miss it.

Caregivers
 

I am honoring my responsibility. I give mom everything that she needs.

However, as a self described loner this is harder than I imagined it would be. I don't thrive well living with other humans and it is starting to weigh on me personally.

I see no other solutions but to buck it up and make mom the priority.

New levels of caregiving in mylife.

In January my mother was diagnosed with breast cancer. With my parents living with me again that makes me the primary caregiver for my mother and the secondary caregiver for my father (when mom is not well).

I have been attending doctors appointments with her and taking notes, I accompanied her to the hospital and waited (for 5 hours) while she had her lumpectomy.

The lumpectomy was successful, on the second attempt. During the first one she went into afib and her blood pressure bottomed out. They immediatly stopped the surgery and admitted her to the hospital overnight for testing and observation. So that left me to take care of dad alone for the first time.

OMGoodness... he is so obstinent and resentful. He hates being reminded of the things he needs to do, but he refuses to do the things he should, even when he DOES remember.

I feel overwhelmed, worried, and anxious. But there are also feeling of hopefulness. This is all looking like it will have a positive outcome so far.

I went to see my mom this weekend, and it was a good visit. She seems to be doing better, which I think may be because she's spending more time at my sister's house. They finished her mother-in-law suite, and it is really nice. It is still difficult for her to think of the words she wants to say, but I just wait for her, as when I'm visiting her I literally have all the time in the world to wait. I concentrate on not letting it get on my nerves, and not trying to finish her sentences for her unless she's really stuck on a word.

We went on a shopping trip to the mall to get a birthday present for my sister. My mom was able to express some opinions on different items, which she often gets frustrated and cannot do. We also cooked together - this is hard for her nowadays, as well, but she's fine as long as she only has to make one dish. I also showed her my Zentangle workbook, and we drew some Zentangles together. I was very pleased to see that she was able to draw and make some decisions of her own about what to draw, and make artistic decisions.

She seems to be on top of her medications, too. My sister made her a very explicit pill box container, that is color, time and date coded. It really seems to be working for Mom. The times when I checked on her this weekend, she had taken her pills on time. I think this is something that has improved by her staying with my sister also - they keep her on schedule, and so now it has become a habit.

My mom is not ready to go live with my sister full-time, although my sister wants her to. Mom talked about how calming it is for her to work in her yard; she is a very accomplished gardener, and her yard shows it. If she stays away from it for more than a few days, though, it can start to get away from her. She is completely against having someone come and do her gardening for her, even just to cut the grass. She also enjoys being on her own for periods of time. I'm hoping she will be able to hang in there and continue to enjoy her own home for as long as possible.

As for me, I'm feeling a good deal more relaxed than the last time I saw her. Her medications are straightened out. She's keeping herself fed, the house is super-clean as always, and of course her yard is lovely at this time of year. She knows the people who live around her, and our relatives and some family friends drop by and see her from time to time. Honestly, I'm more worried about my sister than my mom at this point. She is stretched thin by all she takes on. I'm not sure what else I can take on to help her at this point, but at least I can give her a reassuring report from my visit this weekend.

Georgia Ma'am
 

Bless your Mom, your Sister and YOU.
Heart touching story! Thanks!

This was not a great weekend with my mom, and now I'm exhausted. Just driving all the way to see her wears me out, and I usually try to take Monday off when I get back to rest up and get ready for the coming week. But no, I rolled in here late last night, and I had to get up early today to get ready for work (visit from the new president - three days).

She has now started obsessing over things she has to remember. She must have checked her medication 40 times on Saturday, to make sure she had taken it. I guess that's better than her forgetting it. But she fussed over it every time, full of worry. It's hard to see her feel so compelled.

She also cried over my dad - but the bad part is that she quickly stifled herself, not giving in to the tears, and berated herself for not being "strong, like other women". I know she still cries, which is sad, but it's normal I think. She met my dad in high school and they were together until just two years ago. He was her entire life. What's worse is that she's still grieving so deeply, and not feeling it's okay for her to do so, and she doesn't feel like she should share these feelings with anybody. I tried to be sympathetic and say the right things, but she doesn't really want my sympathy.

She wants us to go on pretending like everything is okay. Of course, everything is not okay. In addition to my dad being gone, her memory seemed to be worse this time. Even more terrible is that she beats herself up over it, as though she should be able to control this awful dementia that is taking her language skills and memories away.

We were able to have some good talks this weekend, and we ate some delicious food (that I prepared, with her "help". We used to be able to cook together, as long as she was only in charge of a single thing, but now even that is getting beyond her, and she knows it.)

I'm starting to miss my mom. And yet, she's still here. But in some ways, she's not.

I saw my mom this weekend, and it was much better than the last time I saw her. She was a little more together, and her word mix-ups didn't seem to bother her so much. She has started a gigantic new flower bed project - probably 300 square feet. We had a good time looking up plants for it in her horticulture books - since I am in no way capable of helping her dig up anything.

She's quite pleased that two bluebirds have moved into one of her birdhouses. They are fairly rare in her area, and you have to have just the right accommodations to attract them to your yard.

We were able to cook together this time; she was able to help more than she could last time. We had some good conversations, and I gave her a back massage, which she loves. I guess we are in a phase where some times are just better than other times, and the times go up and down. I'm hoping so, I would much rather have it fluctuating than have the downward trend that I feared last time I visited.

I was able to take Monday off this time too, so it wasn't so hard for me to get back in the swing of things after I returned home. I'm just going to have to resign myself to going with the flow, and always taking a vacation day after each trip. Fortunately, I have a lot of them.

One of the things I did when visiting my parents when they lived in their last house was not help at times. I needed to see what they were doing and how they were doing it. There were a couple of things I never knew.

My mom's routine was dependent on my dad's needs; once he went into the hospital one day ahead of her (both with pneumonia,) my brother found her in her nightgown at 8 PM having burned something in the microwave. She'd never gotten dressed that day. The tv was on a fuzz channel since she couldn't turn on the cable. We were so concentrated on my dad whose short term memory was gone, we didn't look at my mom.

Hospitals and skilled nursing facilities will work with you when both of your parents are incapable of making their own decisions. My parents both had powers of attorney, etc. These required that they be seen by their PCP and a psychiatrist. The psychiatrist wasn't a problem. PCPs won't visit their patients in a hospital or skilled nursing facility. The patient has to go to them.

I hope your mom has all the needed paperwork to make it easier for you to care for her. I hope you also have this paperwork for yourself.

I hope she continues to remain in her home as long as it is safe and comfortable for her to do so and that any transition is smooth.

Best of luck to you.

Femmewench, thank you for your thoughtful words and insights. It's a worthwhile idea to observe my mother when I'm not helping her; it's just so hard to watch her struggle and be frustrated.

I admit I've been remiss in getting all that paperwork completed for myself. Thank goodness we do have everything in order for my mom.

It is my and my sister's goal to have her live in her own home as long as she wants to and is capable of doing so. She already spends about a third of her time at my sister's house, living in her own suite. At some point, I expect she will get tired of bouncing back and forth, but for now it suits her to live in two places.

Best wishes.

Caregivers
 

My mom has lived with me for a year. I feel like I lost a little of me in this. I like my independence but that seems lost too. I had shoulder surgery and everytime she heard me get up she came running. I know it is sweet but sometimes I need to be alone. I was under the weather this weekend and she did leave me alone, I was grateful for that. It's hard because I like to be alone.

Dementia is hard, that’s all there is to it.

A couple of times in the last couple of weeks when I have called my mother it has to be explained to her who I am before she can get on the phone. Over the last few years I’ve been learning how to cope with these bumps in the road as each new development comes along. I know that she has forgotten my life, her life, and her 60 year marriage. But I call her often enough that she knows my name, my voice, and that I am a force for good. We are getting to the point where this is starting to erode.

I know in my mind that this is the natural progression of what she’s going through, and it is not her fault. Each of these steps though, still hurt the first couple of times they happen. I adapt and accept and get over it pretty quickly learning each time that this is the new normal.

It still sucks.(w)

That's got to be so incredibly hard on you Kelt. My sincerest condolences to you, as you walk your mother 'home'.

Your post about your mother's dementia squares with an event that happened yesterday at work, while taking calls on the corporate reception telephone line. There's this elderly gentleman, with a southern Mississippi drawl, that draws you in for the 'klll'. He calls at weird random times; I'm guessing it's when his care attendants and nursing staff don't see him pick up the phone.... but he's got dementia super bad. At first, his voice is disarming. You feel like he's got your best interest at heart. Until, he lashes out at you in the most vitriolic of ways, which are as equally disarming. He kept calling the corporate line, wanting to talk to his favorite salesman on the sales and service team. Two minutes after his first call, which I patched through to the sales and service team, I get a call from his favorite sales and service contact on campus. I was told that "Clayton" had dementia and that next time he called, to stall for time, so IT could go behind the 'scene' to establish the identity of the phone number he was calling from... so they could permanently ban him from being able to call and harass the sales and service staff. When they disclosed the story behind the horror show this person was capable of, upending the whole entire day with his cut-throat vitriol, I felt incredibly sad for the sales and service staff, as well as the elderly gentleman who had the disarming Mississippi southern drawl. Dementia is indeed, an very unsettling medical condition for the person affected by it; and also for the people who care for those affected by this life altering end-of-life-story condition.

My heart goes out to you, as you navigate your mother's care. (f)

I don’t want to give the wrong impression. While it is very common with dementia patients to be agitated, angry, paranoid, and subject to personality changes; this is not the case with my mother. She has gone mostly what I call “ragdoll“ she is very sweet and doesn’t ask anybody for anything. I am able to joke with her that she has become the ultimate Buddha with no past and no future, now everything for her is a mildly pleasant surprise, she lives in the present. In this I know that I am very lucky, my hurts are just about watching her drift away. It is difficult to be forgotten by someone when you are right there.

Care givers and Stress ⬇️
 

Stress
 

My life before becoming a caregiver was slammed now I live an exhausted life. My job days are between 10-17 hours a day, I come home and take care of mom and then travel 80 - 90 percent of the time. I cook all weekend so that mom has yummy home cooked food all week. I am exhausted everyday.

Stress
 

This afternoon I ran into a dear friend of 32 years. She asked me how I was doing and I told her about the shoulder surgery. She asked me about my mom and I said okay but I was trying to get her into PT. Lastly, she asked me how I was doing balancing my heavy workload, business travel, medical appointments, and caring for mom all by myself.

I looked at her sweet face and knew that I had to be honest so I told her the truth. I am overwhelmed and exhausted everyday.

:blink:

chad, they have so many programs for the elderly, or companions that will come to your own home , senior citizen programs. with or without health limitations. I'm sure you must have checked into it. Let someone or program help you, Your (((( mom )))) will like it too ! good luck :)

Mom went for a little stroll last night, 4 AM.

“She was wearing just her pajamas and had made it out of the house down the ADA ramps to the parking lot and was heading for the street. She had her walker filled with items that she was going to sell to a Vietnamese woman.“

Those are the chart notes. It was 31°. The part of the state she lives in now and has for the last 30 years has roughly zero Vietnamese population. We may be entering a new stage. One of the reasons I chose the house she is living in now is that they don’t believe in locking people down because they are a memory patient. The back door she used as exit is near her room and the door has an alarm on it, they will start setting the alarm at night but otherwise just keep a close eye on her and go with her when she takes a stroll. If needed they will also add motion sensors.

*sigh*

Thanks, I asked mom to call her insurance to see if it would pay for a service like Visiting Angel's but she has not done it. I hope to have time to make some of these calls over the Thanksgiving holidays.

I'm sorry to hear this, Kelt. It's scary when things like this happen. At least you have her in a place where they seem to keep a close eye on her, and hopefully it will be even closer from now on.

~
 

chad, the senior programs do all that , they find out her coverage and the programs that fall under her guidelines. Call them and give them her information they will provide options so no one has to make the calls. it's what our TAXES pay for. They would be out of jobs if they couldn't do the work for our senior's :) I am in Massachusetts so I hope the programs are the same in Texas. I am assuming it's nation wide.

Hey, I come to Mass every year you must be hiding. Ha!

I will check into it. Thanks.

Chad, the Department of Aging offers some assistance, but there are guidelines of income and such that one must meet to qualify. I would say to contact them, it couldn't hurt.

My mom called and left me three voice mails this morning. I didn't hurry to call her back because I just spoke to her last night. But when I did call her back this morning, it turns out she has come up with some scheme to come stay with me for awhile and help me recuperate from my bout with pneumonia.

When I first got pneumonia, she told me how she wanted to come help me, but couldn't remember how to drive to my house. I thought my sister and I had talked her out of it. That was two-ish weeks ago.

Last night when I talked to her, I told her how much better I am doing, and that friends have been around to help me out. I'm going back to work tomorrow, and I have been on a couple of outings (doctor visits) that led me to believe I will be able to handle getting from the parking deck to my office. She said all the appropriate things last night, like she understood what I was saying. But then this morning she calls with this complicated plan to come and stay with me and nurse me back to health.

I reminded her we talked just last night and that I am better. I teased her a little and said she must have dreamed that I needed help. And probably, it was something she dreamed. But this is just another sign of my mom's confusion when it comes to conversations and what's going on.

After reading about Kelt's mom going for a 4 a.m. walk, it made me wonder what would have happened if she had just gotten in her car and tried to drive to my house? She might have made it here - but quite possibly not. It wouldn't be the first time she had gotten lost while driving. And what if she hadn't told anyone where she was going? She forgets to take her cell phone with her when she goes outside. And one day, I'm afraid something like this is going to happen.

I wonder if it's possible to put GPS on her car? Or is that something that only happens in spy movies?

Caregivers
 

These days I miss me.
I miss my privacy.

I miss my life before I became a caregiver. I miss season tickets to the opera. I miss plays and symphonies with lovely ladies on my arm.

I miss me.

I feel like I am going off the deep end... my kiddo is locked up for being physically aggressive towards me, so I ran away... with her in lock up and nothing keeping me at home... I just left. And I can feel myself avoiding going back. I know I need to. I know I have responsibilities. But... its so hard.

My mom is having a tough go of it this last week or so. She forgot my father and their 60 year marriage a while back and while she would sometimes ask “did my husband die?” it had gotten to where she didn’t remember his name anymore either.  When I visited her over Christmas at dinner one evening she noticed she was wearing two wedding rings one on each hand and asked me if I knew why. I told her that she was wearing her wedding ring where she always had and that the one on her right hand had been my fathers. She wasn’t sure why she was wearing them but seemed to take comfort in doing so.

Then a few days ago she had a vivid dream shortly before I called one morning and it involved my father having been in an accident and her being told by the police that he was dead. She was so relieved to be awake and asked me what I thought about it. I had to tell her all over again that yes, he really was dead, and has been for five years. There’s nothing like having to break your mother‘s heart yet again before breakfast.

Today was one of the two days a week that I have an extra caregiver come over and take her out for a couple of hours to do something different/fun like a walk in the park or a drive to just look around, special lunch, whatever they want. Todays notes included the rings coming back up again in a way that made her sad and anxious because she couldn’t remember anything about their time together. I can’t imagine how hard it must be to know that you knew but can’t ever know again.:watereyes:

I talk to her every other day and every time it breaks my heart just a little more and then sometimes it’s a gut punch when you just don’t see it coming.