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Family and Friends pushing me to plan now for Memory Care or Nursing Home
Dps8138
Posted: Saturday, December 26, 2020 4:11 PM
Joined: 12/26/2020
Posts: 2


I am new to the forum. My DW was diagnosed 2 years ago. A few family and friends are pushing me to plan for placement in Memory Care or a Nursing Home now. They insist it is inevitable and the best direction. Curious if anyone has dealt with this issue. Thank you

 


jfkoc
Posted: Saturday, December 26, 2020 4:24 PM
Joined: 12/4/2011
Posts: 19397


Well it is not inevitable. I and many others here cared for our spouses at home until they died.

That said at some point you will want to have a plan B. The most important thing to look for in my opinion is staff training. Serious staff training and it can change if the administration changes.

I do not think training is good at most places but probably nursing homes would be less trained.

My two favorite places are Abes Garden and Hearthstone Residences. I thin they are pretty much the gold standard to measure other facilities by.

Now what to tell your "advisory" committee. Perhaps "placement is something my wife's Dr and I will decide upon".


abc123
Posted: Saturday, December 26, 2020 4:35 PM
Joined: 6/12/2016
Posts: 1376


Hi Dps and Welcome! I've never been in that situation but we have a saying here, The Plans! A caregiver should always have a Plan A, Plan B and Plan C. Go ahead and call some facilities, get pricing and tour them if possible. Find a facility that offers respite care. If you get sick, need surgery or decide you need a vacation or break for your own personal care, you will have a place you trust to temporarily care for your wife. If she suddenly progresses and you can no longer care for her you will be prepared for placement. You will find that friends and family will give you a lot of unwanted advice. Sometimes its helpful and most times not.

There's no harm in being prepared. 


Ed1937
Posted: Saturday, December 26, 2020 5:34 PM
Joined: 4/2/2018
Posts: 3833


Dps, welcome to the forum. You will like it here, as you will find understanding, support, and help. I also need to start looking at places in case we need it. No, it's not inevitable. Likely might be a better word.
Cynbar
Posted: Saturday, December 26, 2020 5:35 PM
Joined: 2/29/2020
Posts: 442


I really believe that most people who give advice mean well, and your family is right that you need to have a Plan B and C ready to go. Now is the time to make sure your finances are in order. Many memory care facilities (all of them where I live) are only private pay, so you need to get a good idea of prices and potential add ons (there has been a recent thread talking about add ons at some places really increasing your cost.) If your DW is healthy, she could be in MC for quite some time. It's a good idea to consult with a certified elder law attorney about financial and legal planning sooner rather than later, as this strongly impacts your planning. Once that piece of the puzzle is clear, start researching local facilities.Go to their websites, tour them if possible, look at online reviews, talk to people you know. There have been several threads here about what questions to ask, that should help you. If Medicaid is needed either now or in the future, make sure the facility accepts this (some will only after a predetermined time of private pay.) Find out which places have waiting lists, and how long the usual wait for a bed is. At some point, you should have a good idea of which ones you think would be the best fit. All of this work should satisfy your friends and family, and make you feel more comfortable too. Then, you can concentrate on caring for your DW at home, until the time comes (if ever) when you know you can no longer give her the care she needs, or your own health is suffering.
Dps8138
Posted: Saturday, December 26, 2020 8:26 PM
Joined: 12/26/2020
Posts: 2


Thank you to all for sharing your thoughts. We have our legal issues resolved by an excellent local elder law Attorney. I had not considered the need for respite care. I will investigate the options soon. Thank you again.

 


Victoria2020
Posted: Saturday, December 26, 2020 9:47 PM
Joined: 9/21/2017
Posts: 708


Keeping politics out of here , especially without citations, would be appreciated.

Joe C.
Posted: Sunday, December 27, 2020 5:49 AM
Joined: 10/13/2019
Posts: 509


Welcome to this forum and sorry you had the need to find us. I believe doing your homework on placement early is worth the time. Like you I was initially resistant to start looking until someone one day said to me, “are you going to wait till your in a crisis before you start looking?”, I could not argue with that logic. There is a lot to learn about the different option, level of care, cost, etc. I start my research a two years ago and looked at four different MCs over a couple of months. I involved my stepdaughter since I wanted us to be on the same page if/when went the time came. Now if people ask me what I am going to do I simply tell them I’ve done my homework and have a plan when the time comes, that tends to nip the conversation in the bud.
Ed1937
Posted: Sunday, December 27, 2020 7:57 AM
Joined: 4/2/2018
Posts: 3833


Victoria2020 wrote:
Keeping politics out of here , especially without citations, would be appreciated.

While I certainly agree with you, I read the posts twice to see where politics entered the picture. If it was "Serious staff training and it will change if the administration changes.", I took that to mean administration of the facilities. Of course I could be wrong. I think if it was a political reference, it would have been "when" the administration changes, not "if".
 


harshedbuzz
Posted: Sunday, December 27, 2020 9:06 AM
Joined: 3/6/2017
Posts: 2475


There are those who have been able to care for their loved ones at home until the end with the addition of home health aides and, later, hospice services. This strategy is reliant on the ability to pay out-of-pocket for aides (a little over $30/hr for an agency aide where I live)/family members offering hands-on help, your continued robust mental and physical health and a PWD whose needs are manageable at home. 

My mother also had unsolicited advice about about placement. I think this is a consider the source situation. It was easy to disregard the suggestion from my mom's sister who had been battling with dad for 60 years. It was less easy to disregard advice from people who cared about them both and who had hands-on experience as caregivers to their own parents with dementia and understood the challenges of disturbed sleep, incontinence and hallucinations. 

I admit that some of that unsolicited advice came from me- my parents' only surviving child. I knew that I would lose one parent to this damned disease, but I didn't want it to take both. YMMV, but my mom was 80 and physically frail. I thought I was giving her enough support to take care of her own health needs but I was wrong and she has paid a terrible and permanent price- less than 3 months after his death she landed in the hospital with a COPD exacerbation and out-of-control HBP, a month later the BP issue destroyed one of her optic nerves leaving her blind in one eye. Her lack of depth perception has cost her her ability to drive. She was able to use ride-sharing, but that's not possible now in COVID times. 

If any one of those factors shifts, even temporarily, all bets are off and you'll need a Plan B at a minimum. For respite, to tend to your own health needs or if you are one of the 1/3 of caregivers who predecease your LO. 

My mom refused to make a Plan B, so I did. I had lined up a nursing home that would take him on the fly and a couple of MCF which could move him in within a week if something happened to my mom; she'd had a couple of hospitalizations we'd covered with my cousin and I playing tag-team. I had toured over a dozen facilities and made myself familiar with their policies, training and wait-lists. The folks at mom's local IRL support group were a terrific resource for suggestions around which places were best available. It was difficult, but we did place dad about 7 weeks before he died because of safety issues- he was falling a lot (mom damaged a disc ignoring my advice to call the EMS for a lift assist and I probably blew out a knee ignoring my own advice), keeping my mom awake all night with murder ideation- planning for them to die together when the time came). He settled in well and actually got better care than we could provide. He even enjoyed their daily music activities. One bonus was that mom was able to go back to being his darling wife instead of a "worn out nag" as he referred to her.
Rescue mom
Posted: Sunday, December 27, 2020 9:58 AM
Joined: 10/12/2018
Posts: 1811


I, too, was puzzled by the “politics” reference.... some people have kept their LO at home throughout, but they all had a LOT of help, either paid aides who came regularly, or family. Paid home aides get very expensive on a regular basis; facilities can be less expensive, and provide care 24/7, 365..

Doing it alone for very long is pretty much impossible. And as others have said, what if you get sick, have an accident, or just need a break? You need a plan B. And if plan B involves an individual, you need plan C for when that person can’t .

 


Lynne D
Posted: Sunday, December 27, 2020 10:51 AM
Joined: 7/21/2020
Posts: 29


I may be naive, but I plan on taking care of my husband at home until it is no longer possible. He had a ruptured cerebral aneurysm seven years ago, and went from a feeding tube to fully functioning. I learned a lot about caregiving as I assisted him back to health, while working. My employer let me work from home while he needed supervision. 

A steady decline in cognitive function led me to neurological re-testing with a mixed dementia diagnosis. He is not safe at home alone. I retired at 59 to care for him.

It is not easy, but I am more fortunate than some that my DH is not aggressive nor does he have hallucinations. He can perform all ADLs with prompting. We are blessed with family nearby which is my support and backup should I need something.

In the city where I lived I took half of a course at a local brain center called Powerful Tools for Caregivers. It was cut short by COVID-19 but was extremely valuable. I believe it is offered in various places.

When my husband becomes bedridden, incontinent, or combative I’ve I plan on home aids and/or hospice. 

Before his diagnosis we drew up a trust and POA. We have no long term care insurance, and would have to impoverish ourselves to qualify for Medicaid.

He sleeps all but about 6 hours per day, and I often wonder how long he has. I think, if managed properly, anosognosia is a blessing. He has lost so much. His moments of clarity are heartbreaking.


Victoria2020
Posted: Sunday, December 27, 2020 2:01 PM
Joined: 9/21/2017
Posts: 708


Ed1937 wrote:
Victoria2020 wrote:
Keeping politics out of here , especially without citations, would be appreciated.

While I certainly agree with you, I read the posts twice to see where politics entered the picture. If it was "Serious staff training and it will change if the administration changes.", I took that to mean administration of the facilities. Of course I could be wrong. I think if it was a political reference, it would have been "when" the administration changes, not "if".
 

 Thanks for the parsing Ed-- when I see "administration" I think government-- administering the laws and for a business I think "management." My word hang up .


jfkoc
Posted: Sunday, December 27, 2020 2:08 PM
Joined: 12/4/2011
Posts: 19397


Whoa.....I was referring to the facility administration. Surely facility administrations are not altered by Washington.