My wife is in a nursing home. She has been there for 10 weeks. She has dementia and periodically she has sundowners. I would say 70 to 80% she is fine. Although she can't remember recent events. Other than that we have a good life together. (except for the periodically sundowning. I'm 86 years old. Very mobile and active. I could walk a 6 mile day. My wife is 80 years old. She can shower, dress, put on make-up and etc. We have been married for 63 years. We're very attached to each other. We have a few years of life left. I'd like to spend those few years together. We both miss each other very much. I think about her spending the rest of her life in a secured area and I to feel lock in when I'm in an empty home surrounded by 4 walls. I would like to bring her home and enjoy 70% of our remaining lives together. I know that her condition will get worse. But when that time comes a descion will be made. But in the meantime we'll both have somewhat of our lives back. She is very difficult when she is sundowning which is about 30% of our time together. And it is very rough. But I'm looking at a trade off. 70% versus 30%. What do you folks think and perhaps your advise..
Also, each move will cause another decline. Your wife needs stability and routine. To move her again will be very hard on her then also YOU!
I can sense from your post that this is what you want, so make it happen!
Light therapy can help with Sundowner's. Get full-spectrum lights. Keep them on during the day. Turn them off after dinner. Also, make sure she gets sunlight in the early morning. Light will help regulate her body so that she sleeps at night and is awake during the day. That should help her from getting irritable in the afternoon/evening.
As your wife gets worse and your own health starts to go, it will be difficult without assistance to handle daily life.
You need to remember you need to save funds for yourself when and if you ever need these facilities.
Example, my Dad had to budget $20k per month for 3-shifts of caregivers who came from an Agency that was licensed, bonded, insured, and had workman's comp for their caregivers in case one would get hurt on the job.
Then my Dad moved out of his house and moved into senior living. Eventually he was in Assisted Living/Memory Care which cost him $7k per month. That cost included housekeeping and daily linen service, plus meals. And Aides who would help him bathe, get dressed, and make sure he was feeling good.
When my Mom was in long-term-care/nursing home, it was costing her $12k per month. Mom forgot how to walk, stand, to feed herself, etc :(
Yes, as others have pointed out, ed812day2 had some wise insight to provide, but also note that it would appear that he kept his wife at home for about 4 years after Dx, noticing the increases in memory loss, confusion, agitation, etc. He did not move her until the issues escalated. Were the bulk of those 4 years somewhat pleasurable? Did ed get to enjoy his wife's companionship until she drifted over the edge? He does not elaborate. We do not know any of these details about donero's wife:
- is/was this "to-do" a one-time occurence or was it common?
- was the issue escalated by those who are unaware of how to deal with dementia?
- is/was she on any medications?
- was this a case of sun-downing gone awry?
- what is the reason she is in a nursing home (or is it MC)?
- what reason does the staff provide for suggesting restricted visits?
- why would the staff refuse outings or home visits?
If this was a one-time occurrence, she should be thoroughly evaluated and if possible provided with treatment/medications that could help control any outbursts (our mother is usually easily redirected and distracted, but we now have a VERY low dose of anti-anxiety 'as-needed' for those few times she becomes unreasonable - in our case this was due to UTI. Classic sun-downing, she'd be fine in the morning.) The same anti-anxiety can also help with the sleep issue (helps them sleep through the night better.) It was NOT enough to keep her "drugged", just enough to take the edge off. It may take some time and juggling, but if you can find the right medication(s), it should "handle" a good part of that 30% of the time that she is "difficult." Learning all you can about dementia and the "tricks" of the trade can help with those times as well. Even if it was not a one-time occurrence, it CAN be the result of not understanding how to "handle" people with dementia (don't argue anything with them or contradict/correct them, agree/go along as best you can, redirect, refocus, whatever it takes to NOT get them more riled up.) Learning how to manage those with dementia and sometimes appropriate medications can alleviate most/all of this and allow the person some dignity and some quality of life at home. Once they cannot be managed and/or personal care becomes too much to handle, then a move (or if one can afford it, 24/7 home care) can be made - meanwhile those options should be on the table for research - look for places NOW, don't wait until it is needed!
The suggestions for getting help are valid, as one cannot do it all at ANY age without it taking a toll, much less trying to do it in one's 80s! Since she can still take care of ADLs, assistance would only be needed to help out in other ways, say yardwork, house cleaning, and perhaps laundry, to take some of the load off of donero. That would free up donero (or whoever) to spend quality time with the wife/SO. More assistance can be added as needed, but at least from what he has told us, this should not be needed for some time (of course, every patient has their own timetable and different forms of dementia can progress at much different rates.)
We chose to move our mother to MC. She refused outside help, did not want to move to NC with one brother (thankfully, but that is another story...), the other brother is still working and I could not physically care for her. However, given a loving relationship and the desire to be together, so long as one has help and support, it should be doable (at least during the early stages.)
Until such time that it becomes more cost-effective to use MC AND/OR the care-giver can no longer provide the care needed, even with outside help, it should not be that difficult to make arrangements, prepare the home for the interim to have the patient return AND give donero and his family members time to "bone up" on dementia and how best to handle those who have it!
At the very least, I would suggest finding out WHY the restrictions are in place (no stay over in a semi-private is understandable) and if need be, find another place if she really needs to be in a "safe" environment. I personally would raise red flags over a place that only allows me to visit once/week and not allow any "outings."
Also, for donero and anyone else who does not understand "dementia talk" - I do not think you really know what 'show-timing' means, based on your response. You say:
"No she is not showtiming. My wife is a very simple person. She would not know how to showtime. She is meek and mild."
Show-timing has nothing to do with being meek, mild or not, nor is it anything about being simple or highly intelligent. In my experience, this occurs usually in the early stages of dementia. They know something is amiss, but don't really understand what it is. Put in certain situations, they can hold up their end of a conversation or answer questions and sound "fine." It is kind of like acting, but they can often fool anyone who is not really familiar with them into thinking they are fine (doctors do not see them often and this is when they can often do this, so doc thinks they are fine or only mildly impaired cognitively, but in reality the lapse and other signs are much more prevalent) Frequent visits by family and friends, we see through this charade - however she and others can sometime pull the wool over your eyes too!
Side note: although it is not always the answer, has she been checked for a UTI? Based on the little information we have about the "to-do", my suspicions lean toward son/family members not knowing how to "handle" dementia patients and perhaps in trying to defuse whatever went on with donero, they just made things worse! Asking donero to take a walk was probably a good idea, but then mom should have been allowed to regain composure, and direct the discussion elsewhere to avert escalation. One of my brothers is very inept at this and just pisses mom off even more.
Will keep you in my prayers.
Once I made the decision I did not look back. It would have been very difficult for mom to change her residence. When she was kicked out of the first place, the move causes a decline which was expected. It may have had something to do with her passing four months later, her husband also passed eight months before. Major life changes, very stressful ones in the eight months before mom passed.
Don, just make certain, if you decide to bring her home, that there is a plan in place should some major medical event happen to you. Make sure you have planned outside help so you get some time off. Plan on grocery delivery, med delivery, yard help, caregiving, house cleaning, whatever you need to get the assistance you are going to need.
Again, best wishes to you.
I hope this is a win-win for you. At least you can say you tired. Here's hoping for the best.
donero - no apologies needed. There is a lot to digest and a lot to learn and consider for making your decisions for the future. This IS a major decision. If you do bring her home (you implied that you are leaning that way), you also have to keep in mind that your son and his family (and others) may be against any decision to bring your wife home. Be sure they educate themselves and as you learn, teach them or step in when you have to.
Set up any assistance you need beforehand. Educate yourself so that you know what to expect and perhaps understand how to handle whatever issues arise. Although I am not a big fan of medications, I would suggest you have her evaluated by an appropriate medical staff and find if there are any medications that might "take the edge off." Have a secondary plan in place (this will likely be finding a place that you think she would like and getting on their wait list.) Unless something your wife says or does might impact her or someone physically, just go along with whatever she says/thinks. If she gets in a rut (agitated, fearful, repeating herself, whatever) work on redirection - trying to reassure her, agree with her, changing her focus to something else. Avoid anything that seems to trigger these funks. Mom tends to repeat herself VERY often... it does get tiresome, but until you can change the focus, just keep on answering it like it was the first time! Learn how to make little white lies (this was hard for me, as I believe in being honest, but sometimes it is the best course! Our mother has been making references/asking about her mother since November. There is NO point in telling her that her mother is long gone. It would hurt/confuse her and she likely won't remember it anyway! So long as the "lie" is used to comfort and not hurt, it is acceptable.) It is a new reality for her/others, and in some ways we have to learn how to live in the dementia reality.
I do hope things work out for you and your wife. You obviously care for her very much and if you can get this to work and salvage a few more "good" years with her, it should be good for both of you!
Please lean on your children for help and advice. Talk to the nursing home and schedule a trial run, bring her home, maybe for a weekend, see how it goes.
I'm sure the staff is just looking to have her adjust to the new environment as moves are very very difficult, as is adjusting to a new place. Make sure your home is safe and you have help.
Enjoy your last year's together, but remember to take care of UOU!!
Whether at home or at a care facility, little can be done to change the inevitable course of this tragic disease. Talking to someone in the Alzheimer's Association may help. This organization can provide many resources that can help in the decision making process. While no one can make decisions for you, this forum does offer interesting perspectives on how others have or are dealing with love ones with dementia. Consider the experiences and make your best choice.
“If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you” (James 1:5).