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“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).
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.
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!!
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!
I hope this is a win-win for you. At least you can say you tired. Here's hoping for the best.
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.
Will keep you in my prayers.
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.
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 :(
As your wife gets worse and your own health starts to go, it will be difficult without assistance to handle daily life.
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.
I can sense from your post that this is what you want, so make it happen!
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!
As I ponder the question of her returning home, I think about how and why she is there. It has been about 4 years since she was told by the doctor that she has Alsheimers. I have noticed the increase in memory loss, confusion and agitation resulting in out burst of anger, name calling, threats of bodily harm to me. I have seen in her restlessness, anxiety, wandering-especially in the late afternoon and at night, sometimes in early morning.
Three months ago, she started calling the police, saying I was a threat to her. She would wake up in the am [2,3,4,5] get up and turn all the lights on in the house, and then started accusing me of stealing her money, abusing her and she decided she could not stay in the house with me any longer. Later that same day, she could not remember her actions.
Although there were keyed dead-bolt locks on the doors, she went out of the window, to escape from me [she believed I was trying to hurt her]. To shorten the story, the APS [Adult Protected Services] got involved and I received a court order from a judge to provide a secure environment for my wife outside of our home for at least 20 days. It was somehow expected that things may improve during that time at the facility.
When, I visit her at the facility, she is pleasant . She does not appear to be angry with me or fearful. I am not a threat to her now. but, I tell myself, she has Alzheimer, and thing will get worse over time and not better. The environment at the facility may be a sort of "safety net". That could change if I bring her back home, going back to the way things were before entering the center. I would not get any rest, Sleep deprivation is bad for your health. I have been told that I need to stay healthy so that I can care for her, even from afar.
So, while I missed her [been married 52 years], retunring home to just me and her in the house may not be a good idea [two adult sons out of state]. While the facility is not perfect, I believe it can care for her better than I can by myself. Of course I do a lot of second-guessing. I think that is normal.
Before she entered the facility, I had arranged for expereinced people to set with her. She resented it. So, for now, she is stiil in the memory care unit. It breaks my heart everytime I visit and leave her there.
This a an awful condition that requres hard decisions to be made.
Well this is my story, and it continues.
Good luck and hope this was helpful! Milesaway
A tough decision indeed, let me tell you my story:
My wife began showing mild signs of dementia about six years ago at age of 77 years. Six years later at the age of 83 she was in the very latter stages. Could not dress herself, could not most of the time carry on a conversation, could not remember the past, and in short was definitely not the loving person I married sixty three years ago after going together for the four years of high school. I had taken over the jobs normally did by a housewife. I cooked, dressed her, did the laundry, cleaned house, grocery shopped and endured 32 hour days.
In Jan of this year she fell and broke a hip. After a new hip replacement, two weeks in rehab, she was moved to a private care facility. She did well for the first couple of weeks during rehab at the facility and adjusting. She still had many memory problems and did not know me most of the time. At the end of the first couple of weeks she began to go downhill in every respect. Could not follow rehab directions and stopped eating, talking and losing almost all aspects of memory.
She was admitted to the care facility on Feb 19th and died on Apr 3rd.
Life since then has been a living hell with all types of second guessing. Should I have brought her back home? Would she be better off in the facility where she could get professional care or what? Did I do every thing in my power to take care of her? Did I do the absolute correct thing? Yes a living hell on earth! I chose to leave her in the facility.
Would I do that again? I do not really know after all this time even tho I believe in my heart that my decisions were in her best interests and I made the best decision possible. If, as you say, you wife can still perform many of the every day functions, knowing what I know now, I would probably make the decision to bring her home. But! my wife was far beyond that point.
Second guessing is hell on earth and only you can make this difficult decision you are faced with.
In Your case I would vote a "definitely" yes.
Dementia, in my opinion, is one of the worst sickness that can befall one. For both people involved. At some point you will even begin to question God and at times express anger. I think this is normal.
My prayers and thoughts are definitely with you my friend,
Ren
My Mom is home with advanced dementia. She qualified for hospice/palliative care because of the dementia. They are wonderful support, and will help as much as needed.
God bless you & your wife.