I’m so sorry @chumom that your mom’s cancer is so advanced but glad that everyone is in agreement that she should have peaceful and painfree final days instead of trying futile heroic measures that would likely cause pain and confusion. Aging is tough for the elders and all those who love them.
@Chumom, so very sorry to hear about your MIL’s prognosis. She is blessed that she has such caring children and daughter-in-law. We placed my mother on a home hospice program several weeks ago. They are AMAZING. She will be well cared for and pain free. Hospice also does a wonderful job reaching out to family.
Sorry about your MIL @Chumom She must be a wonderful mother with all her caring children. Hospice will be a blessing.
I do need some further advice about my situation. My parents with dementia continue to live in independent living in a CCRC. This particular community is designed for in-home care as opposed to assisted living (though there are a few beds that I have not explored) and there is a nursing home on site. There are plans, approved and awaiting permitting to break ground, to expand the nursing home and add more beds that look more like assisted living and some designed for couples. But, ground isn’t broken yet and I have no idea how long that will take. It is different from a typical CCRC as they own the apartment and pay fees to the CCRC for services of maintenance, TV, cleaning, electric. Everything except landline phone.
My parents have done so well in the last 4 years in their space of a 2 bedroom apartment in which they can walk to dinner, make soup for lunch, cereal for breakfast, and have cleaning and maintenance done for them. Plus, the familiarity of each other keeps them oriented. However, this is breaking down. In the last week, I have started aid service for four hours a day. They don’t remember they have had an aide so it’s going pretty well. Dad just says on that day they have a “visitor.” Mom, recently had an episode of loss of balance and dizzyness. I brought her to the ER over the weekend and they think it was a small stroke and continues with some problems walking. A vigorous walker and formerly very steady, mom needs to remember an assistive device. The remembering is a challenge.
While in the ER, DH spent time with dad who was disoriented and anxious without mom. He was up and down “checking” on things. He tried to put underwear on his feet and called them “socks.” He tried to drink salad dressing thinking it was OJ. He thought his mom was alive and “running around somewhere.” This is just a few of the examples. When we got back around 7, he settled down with mom there but had no idea where he was and thought he was on a trip. He was happy that his family “would do this for me” and “find such a nice place.” Both were much better the following day and I felt comfortable with our 4 hours a day plan with an aid.
They have not wandered as far as I know but it seems we are quickly approaching the need for 24 hour care. This plus the CCRC fees are very expensive. Plus, they don’t have companions, but aides and are more expensive. I plan on talking to the social worker about what other residents have done. Do we sell and move both to memory care? Dad really needs a facility (if that is what is decided) who can manage his kinetic and demented energy if they are at a long term care facility. I don’t think assistive living will be enough. Mom is very compliant and laid back and doesn’t need such but can benefit from the activities. I don’t think we will have problems selling the unit. The CCRC is at capacity.
Sorry to hear about what you are facing GTalum. My mother was in an Independent facility and started to decline in health late last year. Your comment about your mother using the walker caught my attention because my mother put up a fight the last 12 months when it came to transitioning from a cane to a walker. I lost count on the number of falls and trips to the ER but it was easily over 6 including many stitches and broken glasses. You would think that she would have learned, but she had some age related dementia and a bit of good old stubbornness. I had many conversations with the workers/nurses at the facility and there were many residents in the same boat as far as reluctance to using walkers. However, most of these other people didn’t fall so hard that they need to go to the ER. I hope your mother is willing and can mentally make the change to using the walker always.
After her very last hospitalization, I hired an aide for 12 hours during the day and had scheduled for aides in the facility to take her to the bathroom twice during the night. Well, she didn’t last 24 hours because she tried to make it to the bathroom by herself and fell again. What I am trying to say is that perhaps your parents need more care than they are getting at their facility. Would your mother agree to move to memory assisted facility? It sounds as if your father would benefit from more care around the clock. Is hiring someone 24 hours a day and staying in the assisted more expensive than just moving them to a memory unit together? Is the assisted living okay with your parents remaining under 24 hours aide care if your father declines more. I know where my mother was that they required people to move if they reached a certain threshold like your father’s.
After her last stay at rehab, my mother ended up at a wonderful (and there are very few around her) campus built with independent, assisted, memory wing and nursing facilities. She lasted about a month there. It was a bit sad to see her transitioned from an apartment to a just a room, but she had reached that stage in life where she required more help.
I wish we had moved her earlier. Perhaps she wouldn’t have fallen so much and deteriorated as fast as she did.
It is a hard decision for you. Have you started to tour facilities nearby. That is the first step. Good Luck!
Thanks @wheatonmom My mom is not stubborn at all and will use a walker if she can remember. I plan to get home PT in to work with her. Yes, 24 hour care is about the same cost as memory care, but without the additional monthly cost of the CCRC. Yes, mom would agree, and she would benefit as well with the activities. She would love the crafts and simple tasks. The main thing I learned, is that I must keep them together.
I also plan to consult with the social worker and head of nursing about the ability to care for dad (and mom) as the dementia progresses. I know that DH, a patient person, was exhausted after 2 hours with dad at the apartment while mom was in the ER. He had little control of the situation. I’m sure the level of dementia escalated as mom was gone. But if this can happen while not moving from their apartment of 4 years, I suspect this will be the new normal any day now. He doesn’t recognize the place without her there.
@GTalum, I am so sorry you’re going through this rapid deterioration of the cognitive condition of both of your parents. Although there’s no way to predict the future (if only!), it might be helpful to consider the long term. I’m sure you know that moving will take a lot out of your parents. If they need 24-hour care right now to be safe living where they are, it may be worth the expense for a while to help you evaluate what’s going on with them and how rapidly each of them is deteriorating. i know it’s not sustainable in the long term but you could set a deadline and use that time (and feedback from caregivers once they are in place for a little while) to consider the next step.
I am so sorry. You’ve shown us your love for your parents and worked so hard to find solutions for them. It’s so hard when there doesn’t seem to be a good next step.
(((((Hugs!)))))
@GGTalum, This is scary and sad {{hugs}}}}…
Having moved my Mom from AL apartment to memory care, I can say go for it. If the have rules about couples (many actually don’t and there are double rooms) they will be together, and then looking long term if one is alone, at least they will be in a familiar environment. My mom’s MC place gets everyone out of their room every day all day and socially it is really good for her (she is a social person). I also just visited my old friend who had been getting a little crazier for 5 years and never left her house at her memory care place. Her niece got her to go. She is actually doing very well and neither of us thought she would.
I’ll just say one other perspective though. My dad’s second wife went through all (3) the AL places in their small town and didn’t ever settle. She moved back home for a while (after Dad left) with 24/7 aids and that was a disaster. So for her, the board and care place with her own room and only 2 other people in the house and one aide and one house manager were enough for her. She was physically strong though until towards the very end. But board and care homes can be great if you can find a good one. Like babysitters, good ones are more precious than gold, but equally hard to find.
Edit to add: move sooner rather than later is my advice. If NEVER gets easier! My mom almost literally starved to death because she didn’t know she wasn’t eating and the AL place didn’t track it well enough. Memory care, they hand feed her some days and record the amount she ate in a book reviewed weekly.
I think the “ship has sailed” as to doing this sooner rather than later. But good advice @esobay and advice I will need to figure something soon. I cannot imagine my parents, especially my dad, being able to lay down any new memories, especially since he sometimes doesn’t recognize the place he has lived at for 4 years. I think @oldmom4896 has a good point and to give myself some time to explore and to pay for that time.
I’m so sorry @GTalum. 
Another vote, here, for buying yourself a little time to figure out the best course of action . . .
Maybe I’m glossing my childhood but I just don’t remember my parents’ generation dealing with stuff like this. None of my grandparents went into any kind of elder care, though one died in his 60’s.
It is scary and frustrating and heart-breaking.
Oh @GTalum our parents sound very similar in a way. My dad does not have dementia (that I know of) but a brain injury and he gets very agitated if mom is not around. They also were at a place in IL that could not handle dad’s medical care so I just moved them to a personal care facility (which I think is a euphemism for assisted living). It does have a Memory Care wing in case one of them would have to move there (which I would dread but its nice to know it’s there).
One thing to remember is that your parents are probably not the first patients these professionals have seen with these deficits. It’s a shame the CCRC cannot handle personal care residents. Do your folks the medicines? Are these dispensed by nurses or do they take them on their own?
One things about moving to a personal care/AL place is, if certain tasks like preparing small meals, taking meds, remembering to shower etc are taken on by staff, it frees up your parent’s cognitive load to just handle easier and more lifestyle things, like playing a game or socializing at dinner. I did see a change in my mom when she could give up laundry (which I do) and groceries and even meds, which she resisted at first.
IT can be very hard when you want to keep them together and they have very different needs. My mom is would not need to be in this facility if she were alone, but she wanted to stay with dad and is living as a very high functioning resident. But it’s nice to know that support is there if she declines.
@SouthFloridaMom9 Oh yes, my parents, or at least my aunt went through this with my grandmother. Dementia is strong with this family. 2 Grandparents died relatively young and one grandmother was able to stay home until she died. When I see my parent’s decline, I’m pretty angry at them for not willing to take any responsibility for my grandmother and leaving my aunt (who was an in-law) with the care. She was in a nearby apartment and eventually placed her in a nursing home. My parents took off boating (for 8 months and the settled in the Keys). It seems very selfish of them. My aunt has died, Uncle has dementia, and my parents can’t remember much history so I will never know if any help was offered and refused. But even if refused, you don’t just take off and leave your sibling’s wife with all the responsibility.
@surfcity they actually don’t have much personal care needs. Dad has (finally) been taken off his medication and mom needs her BP pill. She can’t remember to take it so I fill the pill box and someone needs to remind her to take it. Mom does have dementia and also needs the familiarity of dad being around. I don’t think she would do well on her own. As far as playing a game or socializing, that is gone as well.
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Do you all ever think of what you would do if you sensed dementia coming on for yourself? I worry about that. I never want my kids to be burdened with this. But it’s hard to predict and/or identify.
For me, I am planning on dementia. My mother, father, uncle, aunt, and grandmother all have it. If it doesn’t happen great, but I have to plan for it. I talk to my husband and kids all the time about care needs and what I want. I like crafts and like to move. So memory care, day care, whatever works with the family and finances will work. What I don’t want is being where my parents are, having access to all these activities, but not having the executive function to participate. I will have to emphasize that I may need someone to give me executive function.
An acquaintance of my ex committed suicide a year or two ago at age 60, despite being in good health, because both parents had gone through difficult deaths and she decided she didn’t want that to happen to her. She told several people ahead of time and planned her demise carefully.
@GTalum Last year my Dad used to drink hot sauce out of the bottle. He is now in Memory Care.
@SouthFloridaMom9 My sister and I worry about getting Dementia. There are several doctors working on prevention. I have read articles, but haven’t really made any lifestyle changes yet. My Dad’s fall into dementia was not a smooth transition. His wife left him six months before we started to see symptoms. At the time my sister and I didn’t know anything about his finances, medical history, etc… so I will definitely set my finances up so that it will be easier for someone to step in.
@tx5athome Drinking hot sauce on purpose? Or by accident because he didn’t recognize it as hot sauce?
My former father-in-law (not the parent with Alzheimer’s) ate dried hot peppers, thinking they were salty snacks.
I’m sorry if you have already said this, but are your parents at an independent or assisted living facility? I didn’t fully realize at my mother’s assisted living complex she was allowed to have care for up to 1 hour per day. I didn’t take advantage of this for the whole first year, but could have had the nurses administering her meds from a locked cabinet in her apartment. I only found this out when she I noticed she was taking them irregularly from the pill box which i filled.
@GTalum he drank hot sauce on purpose. I would tell him you weren’t supposed to drink it, and he would disagree and keep drinking it.