Is independent living in a retirement community right for us? - AgingCare.com

Is independent living in a retirement community right for us?

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My wife and are are both 77. She has moderate Alz. I am her primary caregiver, and I can currently meet her needs, although it is stressful. We are scheduled to move soon into an independent living apartment in a new wing under construction in a continuing care retirement community. Few of the new residents will have memory issues, and I am wondering how she will fit in. If there is anyone in a similar situation, I would like to hear how it is working.

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You know, it might not be Alzheimers at all. My mother was given that diagnosis by a neurologist when all she had was a UTI. And by the way urinary tract infections show up mostly as dementia in the elderly, no other symptoms that you would expect - no burning, no pain. The infection gets into the blood stream and causes the brain to become inflamed. She was fine after she got the UTI under control. Also another thing that often results in an AZ diagnosis if vitamin B12 deficiency. Have that checked next. Thirdly hypothyroid mimics AZ in many people when it goes untreated. These are all things to look for before jumping (along with the doctors) to the conclusion that your wife has Alzheimers. AND Alzheimers usually begins during middle age. If she is 70+, I would doubt that she has Alzheimers. It is just an easy diagnosis and given the 15 minutes of face to face with the doctor that Medicare pays for, no wonder they use it as a catch-all. Please investigate this further. Hospitalization also causes dementia in the elderly, although I don't consider your wife elderly. My husband is 74 and I'm 69. We are both still working 50 - 60 hours a week.
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As she progresses, she will likely need more care. I know that when my loved one was in a regular AL. She didn't fit in very well, due to her dementia. It seemed to make some of the other residents uncomfortable, even though they had dementia too. Her repeating and confusion seemed to cause them distress. Plus, she never knew anyone's name. Of course, she was not able to learn new names. She was just not able to fit in. When I moved her to Memory Care, I saw an immediate difference. She seemed much more comfortable and content. She was also getting more one one care. I'd keep that in mind.
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My uncle and aunt moved in and out of assisted living and finally he hired someone to come in and help him out. It was much cheaper and he loves his home. They can well afford assisted living, but it was still a financial drain. My uncle is 94 and now my aunt is in memory care. He still has help for himself in his own home. He hated waiting for meal time, he had his own schedule which did not match the facility's schedule. He also found the apartment too small for him to be able to take space away from my aunt and so he was very unhappy with the whole thing. I kept my mother at home with me for the last 6 years of her life and for the last year and a half we had a live-in helper.
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holdingthefort: Have you considered the "living in place" option with home health aides coming in to help you? If few of the residents have memory issues, this may not be the best fit for her .Have you considered that you, sir, the well individual, may live potentially another 15 years? How will your finances hold up should that occur? Your wife may linger 12 years (yes, I knew an Alzheimer's friend who did.) and are you financially prepared to meet those needs?
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holdingthefort, you asked if your wife would fit in to this independent living facility. If your wife enjoys being around other people she should do just fine.

Where my Dad lives, his dinner mates is a lovely couple in their late 70's and the husband has some memory issues, as does my Dad... they enjoy eating together. It's a routine that is important.
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My mom who had mild to moderate dementia and her sister in her 90s moved into an IL with 2 bedrooms that worked for them for about 4 years until my aunt died. I was able to continue for another year with add on caregivers under private contract for about $25/hr to help with laundry, meds and bathing until mom was moved to AL. Having a domestic partner can work if he can get help with some of the personal care issues. I saw a few of the same situations that worked and held off AL for a few years. The advantages are: no meal preparation and safety issues, weekly light housekeeping and bed linen washing weekly. The best thing was that they were with other people socially with plenty of activities that kept both sisters engaged.
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My husband and I moved to a CCRC about 6 months ago shortly after he was officially diagnosed with AD. The move enabled us to be much closer to our children, who have been so supportive and helpful, and to be closer to more medical facilities. The other residents in our independent living apartment building, as well as the entire staff, have been welcoming as well as interesting and involved. We are close to a university and cultural activities that would be much harder to access had we not made this improvement in our lives.
Our community has a memory care unit on the campus so when the time comes we can be together each day.
The biggest downside is the cost. It is all private pay and we do not have long-term insurance so our kids won't end up with much. I know they would rather see us happy and well cared for so we have to accept that we won't be able to leave them much.
All in all, the move was made while we could both agree it was necessary and it has been good.
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I think this depends on how much you are willing and able to do for your wife. My parents moved to an independent living apartment after my dad had a stroke. My mother had mild dementia at the time. As long as dad was alive, he was able to direct her to pay bills and perform household duties (his right hand was paralyzed by the stroke), and manage medicines. Mom moved to assisted living after dad died and it became burdensome for me to help her from 100 miles away.
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I am a retired long term care administrator. Have you mentioned your concerns to the CCRC's social worker (which should be a different person than the admissions person)? This would be a first step to evaluating how the facility is able to adapt their services to your situation. Not every CCRC has a dementia or memory impaired care unit to meet the special needs your wife will need as her AD progresses. I think it would be very helpful to you if the social worker were able to explain how they have handled similar situations to yours in the past. You may be able to talk to someone currently residing there who is going through this same scenario. If you are willing to continue to provide the direct care and supervision she will need down the road, it is very possible that the policies will allow her to continue to live in your apartment. Two overriding principles will be: 1) if she will be safe (not wandering outside) and 2) will her behavior be viewed as an imposition upon your neighbors. If either of these become an issue, she will in all likelihood need to be transferred to their dementia unit (if available) or their nursing unit. You are obviously a very loving husband who wants to do the best you can for your wife. Moving to this CCRC may be the best for both of you.
May God bless.
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My mother lived in the independent section of a CCRC for a little over a year. A lot depends on the staff. If they are caring and well trained, both your lives will improve.

I would suggest showing up at the CCRC at different times of day, speaking to the residents (right before lunch or dinner is a great time) and asking them what they like and don't like about living there. If you can, just sit quietly in the common room and observe the interaction between staff and residents. You can learn a lot by just watching.

Also, be sure you understand the terms of the CCRC. In my mother's case, the buy-in fee was 90% refundable when she moved out (or passed away) BUT not until they had re-sold the unit. It took almost 2 years for her fee to be refunded. We had to move her to a facility that would eventually accept Medicaid when we could no longer pay the $7,000+ per month and her funds ran out. Many CCRCs will not accept Medicaid.
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