Caregiving: Anyone else doing this alone?
I'm the last of our surviving family and I'm no spring chicken.
I have a friend that was in a similar situation with 6 other siblings, 7 total. Each one took 1 day a week.
I'm a little envious.
Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.
Thank you. The waiting list for the older apartments is 4-6 years. Buying into the new development allowed us to get in much sooner. I’m only 72 and my husband is 77. We currently live in an over 55 development two story town home. I manage everything about our lives and I’m looking forward to downsizing again because of our situation.
We always said our next step was Independent Living in a CCRC but never thought it would be this soon.
On the other hand, I wish I would have put the deposit down years ago. They say most people wait too long and don’t get to enjoy the independent part.
Beyond this planning I have to let go of control of what life will look like for us.
Thank you for your encouragement.
I don't want to be a "Debbie Downer," but for those of you considering CCRCs with a Lifetime Guarantee or whatever name it might have, recommend you understand very clearly what the medical coverage entails, especially if/when you or your LO needs to move into Assisted Living or Nursing Care.
My parents made the CCRC decision a number of years ago as well, though my father passed away before they actually moved. After 4.5 years in Independent Living, my mother recently had to move to an Assisted Living apartment. Dementia was a factor. The "Peace of Mind" regarding not needing family's help has proven to be unfounded, in both IL and AL, even though she lives in the top-ranked CCRC in the state. Even residents say you "MUST" have an advocate once one has to move from Independent Living (and sometimes before) - someone to track medical conditions and care, schedule appointments, coordinate transportation (especially for those in AL who can't do it themselves), attend appointments either in person or virtually, research alternative treatments or obtain second opinions if needed, provide companionship if their condition precludes their participating in group events, etc, etc, etc.
The perception that they wouldn't need family help has been a fantasy. A couple years ago, my husband and I moved from about 12 hours away so that I could be that person for my mother. Even though she lives in an "excellent" CCRC, I've had to cancel vacations and miss work-related travel. Luckily, I'm for the most part retired, though would still be working full time if I hadn't had to move, and my husband can work remotely.
In my mother's case, in hindsight, it would have been better (and probably more cost-efficient in the long run) to figure out how turn my parents' den into a ground floor bedroom with a full bath, move in with my mother, and obtain in-home care if/as needed.
On the other hand, yes, day-to-day care is okay, holidays are all celebrated with gusto, there are lots of activities for those so inclined and the environment is quite nice.
Welcome to Mayo Clinic Connect @debdown63 . You’ve really given all of us something to think about! I always thought that CCRCs were self-contained and you didn’t need to worry about anything. Guess it’s not so. Is there anything specific that the members can help you with?
You're so right! The person in a facility, even the very best facility, needs an advocate on the ground, especially if he or she is challenged cognitively. One other bit of advice I can offer is that if you can keep the resident looking normal (regular haircuts, clothes that match, etc.) that makes a huge difference in how the staff reacts to him or her. I know families expect the staff to take care of these things, but they are often overwhelmed with duties and may tend to skimp on less urgent things. They'll grab whatever top is handy and easy to put on the patient and whichever pants are relatively clean and nearby. The resident can end up looking worse for wear, but, in truth, if you can make it easier for the staff to keep the resident looking "normal" they'll be treated better by everyone. I know this doesn't seem to make sense, but I've seen it a million times. I've been a hair stylist in a very upscale facility for over 12 years.
I'm taking care of my husband with dementia & myself in the home. Sometimes exhausting & sometimes he's argumentative & downright nasty - even got combative once. I'm trying to decide at what point a nursing home should be considered. My friends say now - but, he can shower himself & feed himself - but, can do nothing else. It all falls on me to keep things together & make all appointment & do all cooking & shopping & maintaining home. Exhausting to say the least.
I share your concerns. I’m going to visit some facilities soon. Planning on asking questions and seeing if he will qualify. I know his doctor can fill out form, but I’m wondering how the skilled nursing requirement comes in.
When my cousin went to Memory Care, which is Assisted Living and not nursing home care, they told us she would stay there indefinitely, unless she needed skilled nursing care or became unable to transfer to wheelchair with the aid of one attendant. She passed away there, though it seemed her ability to transfer was very low. The difference would be that she weighed probably 90 pounds and my dad is over 230. His mobility is extremely poor and declining. Plus, my dad has CHF, CKD and other medical conditions, in addition to Alz.
Its becoming increasingly difficult because I have severe COPD with less than 20% lung capacity - so I run out of energy very quickly - I've reached the point that I'm just tired of all the responsibility & when he gets argumentative & nasty I become a super-witch! Then I am mad at myself.
Caregiver fatigue is real! I suffered physically from the stress related ailments I got during my prior caregiving responsibilities. It was brutal. I actually got night terrors from it. Placing her helped, but I was still tied to those responsibilities for 6 years. I’m now approaching that level with my parents. So, I know the current situation is unsustainable. It’s not worth the cost of my health. I appreciate it’s different when it’s a spouse, but the damage is still real. Good luck in your transition, if that’s what you choose.
thank you for the kind words & understanding - life-changing decisions coming up in the New Year for sure.
I am well aware that when my husband and I move to the Independent living apartments of the CCRC that he may or may not be able to move in with me. My biggest fear is that but I’ve had to let go of what it will look like . Either way I will still be very busy but with additional help and services and if I get sick they will take care of him.
This is an expensive endeavor ( we do have good long term care insurance) but so is 24/7 home care- which entails the cost of care and the cost of taking care of everything else.
As I look into how this will look for us if I stay as healthy as I can, my husband will be in Memory Care at some point and I would be there for him as much as possible. I would live in the IL apartment. We could still do things together and I will be his advocate.
Our children will fill in and visit as long as I am ok, but that all changes if I get sick.
My son and daughters will be the advocates then and the burden will be theirs.
I am just trying to manage my stress and joint pain and all now.
A CCRC is no panacea. It is just a secure place for us with no maintenance so that I can focus on being there for my husband during this arduous journey.
No matter what the caregiving and advocacy never stops - but we can’t do it alone.