Well I like to say I have dealt with my mothers sh-- for my whole life and now I am really dealing with her sh–!!!
@Lassie3 On my list of favorite things goes disposable vinyl gloves! My mom’s lived with me for 6 1/2 years and I still hate the ick factor. I will never get used to it!
@compmom I really hope you do hire someone to help with the colostomy and meds. You go above and beyond anything I could ever imagine doing with that whole issue. (My grandpa had a colostomy bag for around 15 years and I had a tiny introduction to what that entails - yikes!) I hope you can find a better balance for yourself in the upcoming year.
Especially when elder care is a marathon, not a sprint, self care is not a luxury. If there are resources to be deployed, it may help preserve the health of the care giving generation. I would want our kids to utilize them on our behalf while allowing them to live their lives and tend their families.
I know how time consuming it was for me to solo tend my parents through their assisted living and in one case memory care time (over 13 years), even though they were lucky enough to be in a first rate continuing care place. When the time comes, if our kids would visit, confer with staff/drs and oversee the big picture, my gratitude would be huge. I hope they won’t be the ones in gloves, for both of our sakes.
My mother was on hospice at this time last year. Then she went off, after the colostomy. We made the decision between hospice and surgery in March. For awhile, this seemed like a sprint.
For many of us, the sprint does indeed turn into a marathon and we caregivers have to look at the effects on our health. For me, a motivating factor in setting new boundaries is that I need to make my kids a priority (as well as myself, as I am told all the time).
The marathon vs. sprint analogy is appropriate. Dad almost died in August, got on hospice in November and is doing better now than any time in the last 6 months (cognitively).
My marathon started in October 2016 when my husband and I moved to be close to Dad. My sister’s marathon started in July 2019, when Dad started needing 24/7 care and she has been coming here more than 1/2 time. (She even brought her cat.) We will make it, but it is tough.
Thinking of everyone who is remembering their elders or tending them this holiday season. Hopefully, there is a little down time to relax and enjoy the season, as well as treat yourselves a bit. Many here do remarkable things and I wish you all the best in 2020.
@travelnut I was just thinking the same thing… it’s hard to keep adjusting to the “new normal” especially when that’s a moving target.
My mom, who was feeling strong enough for several outings over Thanksgiving, is back in the hospital as of yesterday with fluid building up in her extremities and around her lungs. Massive doses of lasix, and then the continuing dance of adjusting meds to get her back on her feet again. We hope.
Thankful my sisters can be with her this week while my kids are home.
Good luck, @MomofJandL. That fluid buildup is tough - they just can’t seem to get my dad’s under control.
The good news is that they discharged Dad yesterday. He’s still very weak and needs constant attention. There will be a caregiver here 20 hours some days and 24 hours other days. I’m glad my whole family is here, because we are all having to pitch in. Dad is more comfortable having my two sons help him in the bathroom.
He’s supposed to breathe into a spirometer three or four time every 15 to 20 minutes, every waking hour. My sister said he’s always been resistant to doing this, ever since his heart surgery in April. If he doesn’t do it, his lung capacity won’t be improved, he’ll have continue to have fluid, and he risks getting pnemonia. I got him to do it once this morning and he’s been awake for three hours. 
He’s good about doing everything else asked of him, so this is weird. I understand it’s an uncomfortable activity, but it’s better than the alternatives.
Just wanted to say that for the last year or so (until the last two weeks actually), the addition of spiranalactone to lasix has done wonders for my mother (have to get kidneys checked while on it). Maybe that will help someone else too.She is swollen again so we’ll see, but it was a good year.
I found a stuffed llama for my mother that is very amusing. When you turn it on, it repeats everything you say and every sound you make, so it laughs along with you. It even swears if you do, which is hilarious coming from such a cute little stuffed creature! She loves this kind of thing and I’m hoping it accompanies her to lunch.
@MaineLonghorn my dad was the same way. He was say he had done the breathing exercises, which I knew he hadn’t as I was sitting right next to him! For my dad, I wondered if it was his way of giving up; everything was too difficult, he didn’t feel well, and was he truly going to get better? His care was something he and my mother argued about often. Did he take his blood sugar and/or insulin, what was your weight today and blood pressure today, you need to eat, etc.
I believe it is harder for the patient to handle the illnesses when their mind is sharp. While I don’t wish dementia on anyone, sometimes not being aware is easier.
Nine months ago the respiratory therapist said that when my mom started doing her breathing exercises regularly, that’s when he knew she had decided to live. A chilling thing to hear from him, but that’s the reality of his workplace. It really made a huge difference when she started using the spirometer.
I hope they can get her stabilized again for just a while, at least.
We brought my Dad to my house for Christmas for a couple hours. He rarely gets out of his Memory Care, which I feel guilty about. It was raining here (Southern California), so we were inside, but he remembered coming over before and playing Bocce (“we were out there rolling balls”). My dog (who he was close to and who we often would take to visit him) recently died, he asked about him, we told him he died, then about 10 minutes later he would ask again. After an hour or so he said it was time to go home. My husband and cousin took him home and evidently when they drove up to the facility he got really mad (“this isn’t my home!”) and refused to get out of the car. Finally after 10 minutes they got him inside. I am not sure, but I think he thought he was going to his old house.
She got back to her apartment by Christmas Eve dinner. So far so good.
@tx5athome that is the potential problem with bringing a senior home from MC for a bit. We brought my parents to my house for a couple of hours. There wasn’t much to do as they can no longer play board games or even follow a TV show. They enjoyed petting our dogs and unwrapping the couple of gifts I got them.
On the way back, they couldn’t believe how quickly we got to their building (they don’t realize they are only 2 miles away). Mom kept saying “are we going back to ‘Walnut’ Street?” when “Walnut” street was the street she grew up on as a little girl
The MC staff had told family members at a support group meeting that it really is okay to leave your loved ones in the facility, especially if they do have trouble coming back in. It is just really hard for us, the family, to think of them sitting in a MC on Christmas or Thanksgiving. Chances are they aren’t really aware that it is a holiday though. Just sad all around.
We ate at the facility. My mother thought it was Easter. They served ham, so that may have been part of it.
@MomofJandL glad your mother got back on the 24th.
Happy (as much as possible) new year to all.
My relative recently celebrated his 95th birthday and 66th wedding anniversary. He got very mad and said no, he’s only 75. He also says he’s only been married 50 years (tho all his kids are older than 50).
He gets mad often and has a hard time following tv shows. He’s challenging to spend much time with.
My mom had been living with my sister for four years. She was diagnosed with dementia about a year and a half ago, and my sister had hired home health workers to come in and keep her company for about 4 days a week. The last six months were really rough. My Mom kept waking up screaming for “help!” all hours of the night. When my sister would go downstairs, often my mother would be back to sleep or would be having a bad dream. Our Mom kept on asking to go to a nursing home that she used to work at and finally we agreed. I went to visit her a couple of days ago with two of my kids. She was so happy to see us and did not ask to go home! Instead she asked about her cat and my sister. Thank goodness for long term care insurance as we could not afford to have her there. The workers seemed to genuinely like her and she seems well cared for.
@walkinghome What a wonderful outcome. It’s good to hear a story with a positive side to it.
I rarely bring dad out of his care home. I also feel guilty but my family tells me it is kinder to not confuse him more by bringing him someplace else and I can’t do it by myself. Dad is strong and if he gets confused, he may lash out physically or even walk off and getting him back would be difficult. Once I just followed and waited for exhaustion to set in. This didn’t take long (less than a block) but scary. Another residents daughter brings her much more physically disabled mom out weekly and is suggesting we all have lunch together. It’s hard to explain how severe dementia can limit your physical space more than a physical disability. Even my visits, if the caregiver identifies me as his daughter, brings about a flurry of anxious worry about the need to “get ready.” He actually refused to leave his home and go to the dentist 3 days ago.
Thank you @walkinghome for sharing that long term care doesn’t need to be a negative. It sounds like your mom is at the right place at the right time. I used to say that the current long term care situation was the best of a bad situation instead of being grateful he is where he is; at a care home with lovely caregivers and a director who insists on quality care for each and every resident.