I am struggling with knowing the best time to put my mom in a care facility. My mom is 81 and has dementia, strokes and we've seen additional cognitive decline recently.
She had a stroke 4 years ago. She did okay at first some mobility issues on the right side. I feel like I'm waiting for some epiphany, a sign to know exactly when to do this. I'm worried about running out of money too soon. I'm worried about her being upset about me moving her out of her house. We currently live together her, myself and my son. She hasn't started wandering yet but she's starting to forget who we are and it scares me. Can anybody give me an idea of knowing when or just tell me there's never going to be a good time? I am at a loss and I've never done this before.
Only you will be able to decide when you can no longer give adequate safe care to her on a 24/7 basis if it is needed. You see it coming and feel it coming; I can only advise that I do believe you will know when it has come. Meanwhile be certain that all paperwork for POA and wills, etc are done that can be done while she is capable of understanding what she is doing.
Start the process. Hoping it will go well for you and your mom.
Perhaps you could get doctor to order OT/PT evaluation? Having had the stroke first has impacted her physically, and there is potential for another. Hiring help for her and you in the home might alleviate some of the difficulty. Even though she doesn't seem to know you, she isn't afraid of you, is she?
My mother was on BP meds for many years. In retrospect, she may have had some minor TIAs (she lived alone) that brought on the dementia. She refused to consider living elsewhere and I tried bringing aides in, just for 1 hr/day, to get her used to them with plans to increase time and help as needed. Less than 2 months later she refused to let them in.
We finally got her into MC. For 9 months she harassed my YB about going back to her condo. Suddenly at that point, her focus was on her previous residence (sold 25+ years before that) and her mother (gone 40+ years.) Step down due to dementia or another TIA? We never had any official testing done, so who knows. She remained fairly stable after that. At about 2.5 years in MC, she requested a rollator. Not sure she needed it, but perhaps wanted one because others were using them. Her use was sporadic for months. At about 3+ years she wouldn't stand or walk unaided, partly due to weakness for lack of use and mostly out of fear of falling.
She was around 90 when the dementia started, about 93 when she moved to MC and a little over 97 when several strokes took her. The first one impacted her right/dominant side, and swallowing/speech. They finally convinced hospice to come in (denied TWICE!) Several months later, a second stroke, which did her in fairly quickly.
So, there's never really a "good" time. Knowing when boils down to safety for all and how much you can manage on your own or with some in-home help. The aide company sent a nurse first, to do an evaluation. The test she gave mom, in her own place with us there, was more in-depth than the one doc offices use. She had advice (use a timed, locked pill dispenser) and told me that mom could have gotten SOME in-home help via Medicare (has to be home bound and need/accept help with personal care, such as bathing and toileting.) The hours are limited, but any help is better than none! Perhaps you can try calling some aide agencies and see if they provide this evaluation (I did NOT request it AND it is covered by Medicare as well.) They might have some suggestions for you. Nothing says you have to hire them after the eval - I did, as she was alone and I lived 1.5 hours away. It was also Plan A, to allow her to remain in her own place longer, but she thwarted that!
IF the decision to move is made, there are ways to facilitate the move without discussing it with her. We can't "force" a move, but there are ways to fib your way to the place. Never could use the "D" word around mom. She was adamant that she was fine and refused to move, so we had to get "creative." Be sure to check various places as much as you can (hard to do really thorough checking during the virus, but perhaps if OT/PT or evaluation can offer suggestions to delay the move a bit, there will be more freedom of movement and access, so you can check the places better.)
If you think money might be an issue, check the MC places that might accept Medicaid residents. IF she needs special nursing care, Medicaid NHs should be considered.
So I'd suggest you start with an assessment. What access to/support from medical and care professionals do you have?
How old is your son? - I only ask to understand whether he is young enough to need the lion's share of your attention, or old enough to have an opinion about how his grandmother is doing.
I will say that it was the hospice social worker that really assisted in the placement. I also spoke with the hospice nurse and she reassured me that it was definitely time and that she had seen a huge decline.
I can really identify with what you are going through. I know I tried hard to insure she was in a nice assisted living surrounded by her things and I went to bat for every service I could find for her. Bottom line, when we picked up her personal items from the “curb” (we were not allowed to come in and pack so the AL put all her stuff literally on the curb), it was obvious that we made the right decision. There was a mixture of food, urine and other stuff on all her furniture. She had hidden feces covered items in her drawers. We basically took everything to the dump. She was also falling more and more frequently.
The sense of relief I have knowing she is in a facility that can provide her with the care and safety she needs has overridden any doubts, guilt, emotional suffering I was feeling. I wish I had moved her earlier.
I can advise you to try and find some support from any of her health professionals. Some people find placement for their loved ones following a hospitalization. I wish you all the best with a lot of help from above! I do feel as if in your heart you know it’s time. Please keep us posted.
Actually her own home would be the safest place for her and where she will feel the happiest.
Juse because someone doesn't remember your name doesn't mean they are dangerous.
You may need Caregiving help at some point.
My 86 yr old Dad still lives in his own home where he wants to be and has 24 7 Caregivers.
Im now looking in to hiring a Live In as it will be a lot less extensive.
If you work, you can have a couple cameras installed in the house to keep an eye on your mom in case of an accident and she could wear a fall alert necklace.
I decided on Nedt Csmeras as they work well and are easy to install and now I can check in on my Dad 24 7 with my Cell or Computer
I'm guessing you wouldn't be on here if you weren't suspecting that it's about time...Start to look at places, and make a plan. The forward momentum will help you.
Your mom's physician can set you up with a social worker to help you locate places that can transition to medicaid if you think it will eventually be needed.
It's normal to second guess whatever choice you make.
Search this and the Alz.net forum https://www.alzconnected.org/discussion.aspx?g=topics&f=151 ...so much great advice.
Best wishes,
As far as the physical/mental part. Certainly if you are using 24/7 care givers you should be able to keep her at home for the duration...or pretty close. Best wishes. This is probably the toughest of caregiving dilemmas for loving families.
1 - Not able to get 7-9 hours of uninterrupted sleep every night
2 - Not able to eat 3 healthy meals are a reasonable pace in a pleasant environment
3 - Not able to make/keep appointments for your own health needs
3 - Not able to have "time off" daily and weekly to nourish your soul and your other valued relationships
4 - Not able to physically or mentally or emotionally care for the needs of the person you care for.
Luckily it was not the time.
Luckily I/we had just moved into a house that had been built handicap accessible.
Luckily my Husband was not agrressive
Luckily I had the VA and Hospice that heled out a LOT
So I was able to keep him home.
I realize everyone is not that lucky.
I boil it down to 1 thing. SAFETY.
If it is not safe for your Loved one for you to care for them or a caregiver to care for them in the home
If it is not safe for you or a caregiver to care for them in the home
There is 1 option. Placing them in Memory Care, Skilled Nursing or whatever placement is appropriate.
This is NOT a failure. This is accepting that the role of caregiver will change and that you are doing the best that you can given the circumstances that you have.
Not all places are the same. Many are doing what they can to keep people safe.
Best wishes and prayers.
We can share our condolences with you in the loss of your wife. It is very sad that decisions made during the early days of this pandemic have led to her demise and your anguish, as well as for many others.
I'm not in NY and have no real opinion about the governor or his decisions. One decision he did make is problematic - excluding deaths of NH residents from the tally when they passed while in the hospital. THIS was clearly a way to avoid blame. He should have been more open about it. If nothing else, NY and other states could have learned from the mistakes made during those earlier days of the pandemic. THAT he should be held accountable for.
However, dismissing all AL because of what happened when there were no clear plans or anticipated repercussions for any decisions isn't really fair. Did infections and deaths occur in other LTC facilities? Most certainly. However many were smart and proactive. The facility my mother was in included IL, AL and MC. At this time, only TWO staff members have tested positive since the onset of the virus, the first not until around October 2020. Not ONE resident became infected or tested positive. NO deaths. Not one. There are 63 "residences" in the facility (more than one person can live in many of these):
25 Independent Living Apartments
20 Assisted Living Apartments
18 Memory Care Apartments
Several other facilities in the same area DID have infections and some deaths. Due to the nature of this virus, it is VERY difficult to keep it out of facilities, whether they be NH, ALs, prisons, or places for challenged or disabled people. More often than not, it is a staff member (or sometimes a visitor) who brings the pathogens in. Testing for temperature really doesn't help, as many "carriers" of the virus do not get sick, and therefore have no temperature rise or other symptoms, yet they can bring the virus in and expose others to it. Once protocols were implemented and supplies were available, PPE helped to curtail the spread. When tests were more widely available, those helped as well, but the early tests didn't get results for days (or longer), so someone infected but showing no signs could still be spreading the virus.
I am going to continue this discussion in a reply to this message, but mainly this was to try to assure you or others that ALs are not going to be as "dangerous" as a NH might be. Generally those in NHs are much more frail and exposure can be deadly. Those in AL could also have compromising conditions, but generally they don't require skilled nursing care, so it is a very different atmosphere.
Please read the reply to this post.
PPE and protocols available were almost non-existent. THIS would have a huge impact as well. Knowledge is still incomplete.
Did the NY governor's directive requesting patients be moved to NHs lead to more NH deaths? Yes. Would many deaths have occurred anyway? YES. Would leaving these patients in the hospitals lead to more deaths? YES. At the time, about 1k infected people/day were being admitted to NYC hospitals. Anyone in the hospitals at that time would ALSO have been potentially exposed. Look at how many doctors, nurses and other hospital staff were infected and/or died? Your response might have been the same if your wife were hospitalized at the time for something else and was exposed to the virus by those admitted to AND kept in the hospitals. Many people are avoiding hospitals for this very reason, and in some cases are jeopardizing their own health/lives by avoiding care and treatment for other serious conditions.
NHs are notorious for being petri dishes for ANY contagious pathogen that manages to get in. This was probably a worst case scenario, due to the very infectious nature of this virus and the fact that many people either show no symptoms OR can pass the virus before they have any symptoms. However, at that early stage not a lot was known about it. Compounding the issue was lack of federal government planning, lack of PPE and lack of appropriate protocols or treatment. Ignorance and lack of preparation for ANY pandemic were factors in deaths. Refusal to believe or take precautions has led to many more.
While the NY governor did direct "stable" COVID-19 patients to be moved to NHs, to free up hospital space, the CDC guidelines had recommendations the NHs should consider:
* That a patient was medically ready
* The facility could implement the recommended infection-control procedures to safely care for a patient recovering from the virus.
So, the NHs bear some responsibility in this travesty as well. THEY could refuse to take these patients in. THEY held the final decision. However, again, a lot of decisions were based on incomplete knowledge, lack of procedures and lack of PPE.
Case in point:
* Our state had NO directive to place patients into NHs
* Our state has had fewer cases
* Our state has much lower population density
Despite this, MANY in NHs did contract the virus and MANY did die from it. Per NHPR:
"New Hampshire has had the highest long-term care death rate in the country,” she said. “Around 800 individuals, or 75 to 80% of our total deaths from COVID-19."
Comparison (based on totals available at the time):
N.H. 800 NH deaths/1181 deaths statewide = approximately 68%
N.Y. 15,000 NH deaths/48498 deaths statewide = approximately 31%
So, although the TOTAL number of deaths (total and NH total) are much lower in N.H., the percentage of those NH residents who did die from the virus in our state is MUCH higher than the percentage in NY. If our population were much higher (NY is about 14.3x more residents), then estimated number of deaths would be closer to the same as NY.
The directive from your governor was only in effect from March 25 to May 8. MANY have died in NHs from this virus since then. Did it lead to more deaths during that time frame? Most likely. However, again, keep in mind that very few, even the "experts" had any idea how to contain and control this virus. To this day it is killing about 1,500 - 2000 people/day across the country and to the best of my knowledge, no one moves "stable" COVID-19 patients to NHs.
It is sad how many people have been lost to this virus, for whatever reason. It is even sadder that so many refuse to believe it is real or feel the need to protect themselves or at least take precautions to protect others. One can hope that there will be MANY lessons learned from this. It isn't the first pandemic to hit humans, it won't be the last.
I know when it's 'too late'....as we are there with mother.
Tho she lives with YB and his family--she has become basically a hostage to YB's schedule and demands before her needs. I asked her if I could plant a small plant that she loves in her garden and she said I had to ask R as it's HIS house, she's just living there. A plant that will be the size of a basketball when it's fully grown.
She's lonely, people don't want to visit and R makes it hard to feel welcome. He fills her head with lies and scary news and I doubt she will ever leave the house again after COVID restrictions are raised.
Now that she looks to him for EVERYTHING and EVERY decision, there's really no point in talking about any kind of aide or help for her.
Very sad and very twisted.
I think I understand a bit what you may be experiencing. It’s a horribly painful decision for someone who loves their loved one dearly, yet deep inside, may already know it may be that time already.
My mom started showing signs something was wrong about two years ago. But after telling moms doctors something was very off, one doctor draws a clock and says mom doesn’t have dementia. 🤦🏼♀️
We know when somethings just not right, more than anyone. I went through much guilt and crying. I came to the conclusion of “is mom safe anymore”?
If we have to worry when we leave mom home alone just to go to a store for an hour? Do we have to worry if moms cooking and will this be the night she sets our house on fire? We worry about mom falling or hurting herself? If we are just worrying, anxiety, feeling like throwing out hands up because we want to keep her home but know all to well it’s just about taking every millimeter of your health and life away worrying........
I looked for really nice places that mom would have a much better quality of life, assisted living. She can join activities, make friends, have some fun! I found it. Then Covid hit. I thank our Heavenly Father I didn’t place mom there at that time. However, recently, I filled out an application, both doctor and I, for assisted living. We’re getting all of moms vaccines, Covid testing, ppd (tb test), etc. done prior to admission.
I truly wish I could have done this sooner while moms mental status was somewhat better, but I’m glad she was safe home during the pandemic without COVID exposure. Unfortunately, moms dementia worsened, Lewy Body is just so aggressive and hit like lightening.
I really out-weighed the benefits for mom and I both, primarily mom. Do I want to keep mom as safe as possible? Maybe mom won’t be so pleased in the very beginning, but she will get used to being in her new environment. Now, we can visit! Soon, we’ll be able to take mom out to lunch, and so on. Some allow volunteers. We can read to a group of residents, or maybe start a bible group, card group, coloring books are really relaxing, or crafts. This way mom will enjoy that extra step we take for her and you all get to know each other better. ❤️🌻🤗
it’s not an easy decision in anyway, shape, or form. But when it’s time, you really will know. Maybe, you know already, but you need to feel justified for your feelings. Go with your gut. God gave you this gut feeling for a reason. For you, me, or anyone to be asking if it’s time, sadly, it’s probably time. You probably know right now as I write this very long message to you, mom needs more care than I could possibly give. I did my very best, for as long as I possibly could.
I stopped beating myself up about this decision, because I know it’s the right thing to do for my mom. We have to make that ultimate decision, when it’s the right time. Yes, the doctors need to evaluate mom and either agree it’s time for moms needed assistance or not. I found that talking with moms doctors about my concerns, moms mental status (I told them about her hallucinations, falls, eating binges, concerns about going outside by herself, not remembering who I am, etc etc) These things are so important to inform moms doctor because these are the things they aren’t aware of or won’t see by evaluating mom in a fifteen minute office visit, and I always accompany mom on all her visits now. Because, she can make everyone think she’s just fine. If you don’t live with the patient, the patient can say she saw a cat in the window, two men were in her living room last night, or my mom came to visit and we had a nice dinner. How will they know it’s true? First, there was no cat in her window, she lives on the upper ground, would gave to be a huge ten foot high cat! There was no men in our house last night or any other night, & grandma sadly, passed years ago.❤️🙏
We can always visit and love our moms, no matter where their heads lay. God bless both of you.