Since there are some new members here, I’ll pass on the situation with my parents. They initially lived in a CCRC and enjoyed it. However, I was told they needed to move to memory care or 24 hour care in their apartment though no guarantee of this being sustainable due to dad’s occasional violent outbursts. I found a personal care home (sometimes called family care home or board and care) 1 mile from my home. There are 6 residents with 2 caregivers. Dad has been there for 2 years and mom died last March. Not cheap ($7,000/ month for dad), but less expensive than 24 hour care and I don’t have to manage the caregivers. I feel it is the perfect solution. I am also fortunate that dad has a military pension which helps a lot with costs. @Lassie3 and @fullmom, make sure your mom’s don’t qualify for long-term care VA benefits. It can help with costs of caregiving in the home.
I have been so busy lately I have not had time to post, but I read pretty regularly and think of you all. I am in awe of folks like @fullmom @Lassie3 @somemom who have their elders in their home. I don’t see how I could do that, even with 24/7 outside caregivers. I certainly think my marriage would suffer and I know my parents would be mortified if they knew how much their care is already upending my life.
Mom was treated for a UTI - they tested her because she became so paranoid that my dad was having an affair under her nose (which is laughable since he shuffles along with his walker - there is no way he could “sneak” anywhere!) The antibiotics made her a little queasy but that is better than upset and distressed.
Have any of you thought about Thanksgiving and the winter holidays? I had thought I would suck it up and drive them to my cousins big gathering, because I thought they would love seeing their nieces and nephews. But I talked to one professional who thought it would be too much for them. Too many people can be stressful on memory impaired folks, even if they are family. I guess I should try taking mom out to coffee or something now, just to see how she does in public.
@GTalum , we used B&C for each of the in laws after a few months in an SNF & an AL. We found the 6:2 ratio to be much better than the more institutional setting, at least once the LO was unable to enjoy the big group of other residents in the AL. Those 2 consistent B&C workers plus the one sub were able to provide more continuity of care than the ever changing staff at the SNF.
I think a lot of people pay under the table. I knew people who paid via an agency, and also paid the same person for extra time with cash. The people I used for my Mum were all paid $20-30/hour, not under the table, that’s the way they each had set it up, but none were through an agency, I felt better that they got to keep the whole amount.
How are payments to caregivers treated in a Medicaid look-back? Does the record-keeping matter?
Please meet with an elder care accountant ASAP. You will more than likely run into major problems if you have to eventually apply for Medicaid. It will be very difficult to explain where her income went to during the look back period. It is illegal to pay cash for home care and not file required tax forms and unemployment insurance. This needs to be addressed. The decisions of care and placement are exhausting physically, mentally and monetarily. Sending hugs and support.
@123txmom how is your mom right now? Still in pain or through that? Can get out of bed or up from a chair, dress, etc? Otherwise, AL may just not offer the available level of support she needs.
I fractured 3 ribs in April (geez, no SN for us younger folks.) It’s tough. You want to be confident she’s ready for AL.
Besides the fact that it’s illegal, the other reason I didn’t pay my mother’s caregivers under the table was because she writes off the cost as a medical expense on her taxes. If she’s ever audited and can’t show that she paid SS, Medicare and unemployment taxes for them, the medical deduction would be denied. Earlier this year I switched to using an agency. It’s so much easier now and not that much more expensive.
@surfcity I just went to see my mom for her birthday. My husband, father, aunt and I took her out for a luncheon. She was way overwhelmed to the point where she had physical symptoms. We would have been better off having a visit at the facility.
Obviously every situation is different but I’m at the point that I need to remember that change and over stimulation isn’t in my mom’s best interest.
Hats off to everyone. You are all amazing.
For the first time in a few years I am going to visit my daughter in CA. For 6 days. I am so nervous. I have hired someone to do the colostomy, and scheduled visitors every day (she is in AL but alone in her room a lot, except for lunch and pub/dinner).
Last time I went to CA, I literally had ONE FOOT on the plane and the AL called. The entire front rows watched and listened as I talked to AL and decided what to do with my other foot! Step on or off? I did go actually.
This time is different. She’s older, feebler and dementia is worse. She is very very dizzy and I am frantically trying to get her help for that so she stops suffering, and so I can leave! I am so afraid she is goint to fall.
The hernia under the colostomy is bigger all the time and it is hard to cut the hole in the wafer properly. I am going to train the person I have hired the day before I leave.
Hoping to get on that plane but so nervous about leaving. My kids are always a priority in my emotions but they don’t need me as much. My daughter has a major performance and I am excited to be there.
@compmom, I wish you peace and I hope your well deserved trip to see your D’s performance is amazing.
It sounds like you are doing all you can and you have to give yourself this respite and time with your D.
Good luck navigating all of this. Balancing is always a challenge. Remember good and bad things can happen to our loved ones, whether we are present or absent. Share your D’s joy with an open and happy heart!
@compmom wishing you as worry-free travels as possible.
Trying to do a lite version of a similar balancing act here. DH and I are going ahead with our 1.5-week trip out to see DS2 and DIL a time zone away. My mother is recovering from her broken hip (upper femur) and will still have daily visiting OT, PT, and nursing staff. I brought this up before she was released from rehab and the care manager told me they make all recommendations based on patient only, as if she had nobody helping her. That helped a lot, and it helped that my mother was there and took it in.
I don’t know how this will go if dementia becomes an issue. I’ll probably have to do some very cold examination of our family’s overall best interests. And I’m a stay-at-home; how on earth do those of you with outside work schedules stay sane? Hugs, wine, and chocolate to everyone!
@compmom , I say go and enjoy, even if she falls, even if she has an issue. Having experienced the last decade plus of failing seniors and one ‘crisis’ after another, it’s just not fair, not right, that one kid sacrifices everything and others just live their lives. More than that, I know most senior do not want to be a burden and sometimes they will have to be the one who isn’t the top priority. You have to have a life, a real life, a chance to see your kids, go and enjoy.
@momofsenior1 Thanks for your comment. I can’t believe it never occurred to me that things might be different for my parents after mom’s stroke. I find myself automatically saving lots of mom’s dressy clothes “in case she needs them soon” when in reality, she wears very casual, easy to put on clothes, every day and I have to face the fact that she is never going to go to a five start restaurant or Broadway show again.
Big hugs @surfcity! The saving clothes really resonated with me. It was very traumatic for me packing up my mom’s stuff when they moved. So hard to give away the dresses and heels.
As my mom progresses through her ALZ, I keep having to remind myself that she doesn’t have the self awareness anymore to miss those things. It’s harder for us. As challenging as the end stages of her disease are, there is a blessing that she’s passed the stage of realizing her limitations. She’s very peaceful and calm now, and needs the routine and familiarity at the memory care.
@compmom - Go and enjoy this trip. As noted, bad things can happen even if we are there. Don’t put your life, or seeing your kids, on hold.
It’s getting tougher for dad to go anywhere—makes him so breathless and exhausted.
Mom is still physically able to move more but feels she should always be by dad’s side tho it bores her silly and they ignore one another.
When we had tickets to a play and dad just wanted to go back to their unit after dinner, mom kept asking whether we should reschedule. I kept explaining that no, we couldn’t reschedule and dad would rather rest at home no matter when it is rescheduled for.
It’s frustrating sometimes.
Was able to convince my brother NOT to take dad golfing because last time he went golfing he felt awful for weeks and had to go to the MD and take steroids.
The new normal is very hard.
My brother, who moved to Florida last spring (we are in the Northeast) is going to come visit for two days while I am away. Lots of jokes about doing colostomy care. Why is it a joke? Not sure why the family assumption is that guys cannot do it. Too intimate?
I can see that they wouldn’t do showering, but colostomy is on the tummy.
ps I loved when a nurse at the hospital asked me to leave the room for undressing. Then she asked if I had ever seen my mother naked. Um.
Thanks all for the encouragement and reality check. Hope everyone has a good long weekend.
@lookingforward Thanks for asking! My mom is doing better. With time her rib pain is mostly gone but it took over 4 weeks. They’ve released her from skilled nursing and she’s now at home with a 24 hr caregiver M-F. Weekends is on us her children. I think she was beginning to like the skilled nursing facility because of the activities they offered. So, now we’re looking at AL since she’s not thrilled with having a caregiver in her home. She is mostly using a walker but can get up and down from her bed and chair. I think she’s still a little afraid of walking without a walker and we’re not encouraging her to walk without it.
My sister and brother are taking her on a tour of the 2 assisted living front runners. It will be interesting to see what my mom thinks of them. If she does decide on one, then comes the next task of cleaning out her house, 40+ years of stuff and deciding what things she would like with her. Not an easy task
Cleaning out my mother’s house wasn’t as hard as we had imagined. We did an auction guy, followed by the local consignment store, followed by donation to thrift stores. My mother got a large outdoor storage space which helped move things along. At some point I got her a small indoor one, and got a junk removal guy to remove most of it. Her indoor one is upstairs so she cannot see it!! All that remains in storage is basically photo albums and a glass dolphin. In her apartment she kept a loveseat, two armchairs, mattress/bed, a few paintings, a desk and table, and some doo dads like her little glass birds. Hope it goes well for you. It does take a certain amount of ruthlessness and acceptance of the new reality, so I think the emotional side of cleaning out a house is far worse than the practicalities.
I am off to San Diego this weekend. Stocking up my mother’s AL apartment and have people lined up for colostomy and other things. She is anxious and called me several times yesterday about who is going to give her her pills while I am away. Thing is, I don’t give her her pills.
I kind of wish I had just told her I had the flu.
My dad decided to cancel our trip to Nashville next week - DH and I were supposed to travel down there to see him get an award. As with our London trip this past summer, he waited until the last minute to cancel and then asked me to take care of all the cancellations. In the summer, we were at our cabin with limited cell reception and it was an ordeal. Yesterday, the internet at our house went out due to the storm! Long story short, it was a nightmare taking care of everything. The biggest problem was that he told me the wrong password to his booking.com account and then I couldn’t get hold of him. I finally tried a different password I know he uses, and it worked! Ack. He and Mom are getting to be a big job, even with the advocate helping us. My sister admits she’s tired of thinking so much and hasn’t been doing as much as she should for them. I told her she shouldn’t beat herself up because she needs to take care of herself.
I just returned home yesterday from an emergency trip upstate. Sunday at 3am my 97 y/o mom called to tell me she thought she was having a heart attack and was calling an ambulance. My sister (local to her) was at her ski house and not home. Mom lives in an apartment that is part of a hotel so I called the front desk and they called the ambulance and let them in. My lunatic mother managed to get clothes on, unlock the front door and sit waiting for them with her med list in hand While she was waiting for the ambulance, I booked a 6am flight to get there. While I did speak with the ambulance EMTs, they headed for the hospital without giving me an update or even telling me which hospital. I had requested they go to the one where her original cardiologist practiced since that system would have all her records, but had to call the hotel front desk to get the name of the ambulance company so I could find out where they took her.
I got ahold of my sister and her husband drove her the 90 minutes back to the hospital so mom wouldn’t be alone for too long and I arrived by 7:45am. Turns out her pressure had dropped in the ambulance due to arrhythmia and they had to shock her in the ambulance. Long story and many hours later we ascertained it had not been a heart attack but that she has developed a tachycardia. As often is the case with older parents, the doctors wanted to be aggressive and we asked for the least aggressive plan that would treat the issue. Lucky for us, the attending cardiologist on call Sunday was an electrophysiologist who had a great relationship with my mom’s old cardiologist. She actually called her and learned so much about my mom as a person that she totally agreed to go with the plan. She also offered to take her on as a cardiology patient since she is double certified in general cardiology and electrophysiology. We consider that the silver lining of the whole ordeal.
There is a medication that can treat the symptoms and we’ve decided not to worry abut what caused it. I took her home on Tuesday and spend two nights with her, returning home yesterday morning. This incident also gave my sister and me the opportunity to revisit some of the hard conversations with our mom with respect to her ultimate wishes and how she would want us to make decisions on her behalf. She asked me what would have happened had she not called the ambulance and I told her she likely would have died.
Mom’s memory is declining and she is a stubborn old bird who insists on living alone and pushes back at any attempt on our part to find ways for her to engage in life. While in the hospital, she agreed to let us find an “assistant” (don’t call it an aide 
) for 2 afternoons a week who could drive her to an exercise class or the grocery store. It would give her some independence and take a little pressure off my sister. Who knows if it will happen, but I took advantage of the crack in her shell.
Very long post, but I appreciate this safe space to process the last 5 days. Raising kids wasn’t easy, but helping elderly parents navigate this stage of life is, in a way, so much harder.