When is it time…
How do you decide when to seriously consider MC? My DH is okay as long as you don’t say no. Trying to distract or re-direct works sometimes, if not he gets mad…not physically aggressive, but looks angry and says things like ‘you always think your right, this is my house I can do what I want, I’m leaving tomorrow”. I think I can handle it but can feel myself getting down. My grown children can no longer stay with him overnight. if I want a night off or away, he bangs on their bedroom door not understanding why it’s locked; I’m guessing it’s because his routine with me usually here changed. When children visit from OOS (still young age 23), should they try to re-direct, he gets mad. They leave as they feel unsafe with the angry look on his face. He then gets sad and cries as he knows something happened but can’t remember. He can’t sit down and spends most the day outside picking up rocks etc. what about his dignity..I know the neighbors (they know), think this is crazy My children want me to put him in MC so daytime he will be with lots of people, fail free activities etc…so my question is, when is it time? Maybe I’m too close to see extent of decline
DH solid 5 with a foot in stage 6
Thank you
Comments
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it’s a difficult decision but i think if you’re asking the question you should start preparing. Is he on medication for his anger? Does he have a Geriatric Psychiatrist to manage his meds? He might be able to stay home longer if they can manage his agitation. If his agitation can’t be managed, your safety might be at risk. Will you be able to care for him by yourself if he becomes incontinent and or bedridden? Can you hire help? I would start researching facilities and tour the top 3. Make a list of questions to ask them. At least you will be prepared if when the time comes. You also should consider your life and health. Hugs.
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I am so glad you asked this question as I have had this same question this week. My DH has early onset FTD Bv stage 5-6. I have researched the MC facilities and have my leading candidates, but thought I was several months/year out. Unfortunately we have had a really tough week. A LOT of oppositional behavior from my DH - I think he is constipated that is triggering more urinary incontinence. He won't do anything about the incontinence, like change his wet pants until I pull the underwear down forcibly (after 40 minutes of trying to negotiate the outcome). I can't leave him in wet pants and he insists it is water, doesn't know why it is happening and why I am so "mean" about it? Tells me it will dry and I just need to "get over it" and "get some help" for myself. Won't wear pads never mind adult diapers. Also more pushy about control items. Came to a head a couple of nights ago when he took the middle of the bed and refused to make any room for me and told me I could sleep somewhere else. At what point is it just better to be in MC? Usually people end up in care facilities after a health incident or because they can't live on their own. I don't think we will hit either of those. Sorry to pile on so long, but it has been a tough week.
For others who have had to make the move of a spouse to managed care - what were the indicators that it is time?
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I think it’s telling that everyone in your household is walking on eggshells or close family cannot visit due to his behavior. That sounds sufficient to get him medicated successfully enough to allow more pleasant lives for everyone, or I would be looking at placement.
3 -
Behaviors such as what both of you mention are often the reason for placement. Aggressive behavior needs to be treated with medication or he won’t be accepted for placement.
Truthfully, when either you or your children - including adult children - don’t feel safe, it’s past time for placement.
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DH is on Seroquel XL. He gets mad but not physically aggressive, however, it’s enough that children don’t feel comfortable. He tried to kick us all out a year ago but Seroquel was a life saver. I think I want to make sure I’m considering this for him, not because I’m tired, feeling lazy or just tired of dealing with this every day. Do I deserve my life and happiness more than him? . I think I feel guilty as when I read posts, I realize others have it harder than me. He’s not incontinent, showtimes and likes respite at a local church but am I just putting my happiness and children’s ahead of caring for him? It’s a rough day. I know you all understand.
5 -
you are looking at this wrong- it’s not that you would be putting you and children ahead of him- it’s that you recognize the following:
This disease IS going to take him. It’s already taken a lot from him, you and your children. Don’t let it take your health, your life, your future with your children. They need you and they need a relationship with you. Did you know that 1/3 of caregivers die before the person they are taking care of? And that’s before discussing the ones who are killed or seriously injured by the person they are taking care of.
He’s not going to be happy no matter what you do- all you can do is what keeps him safe.9 -
If you can’t do it for your own health, do it for the physical and mental health of your kids. Their suffering may impact them for years, and imagine how bad it feels for them not even having a safe relaxing home to return to. Forgive my bluntness here. Your kids have their lives ahead of them, and I would prioritize them.
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I worry my DH could be like this soon. Today he told me to stop harassing him. I have to struggle with all kinds of negotiations to get him in the shower once a week. He’s not incontinent but if he were I think he’d be like your DH. I have been considering touring a facility. I have considered and also committed in my heart to caring for him at home until the end but when I see he’s just fighting me for nothing & he’s not himself, and when he gets a little aggressive, I start to think that being a caregiver doesn’t have to mean complete sacrifice. He might be just as happy in a home. I’m destitute at this point financially so it would be good to go back to work while I still can.
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I agree with others that him being home is not really his happiness versus yours & your kids. He’s a patient now and his illness is taking over your home. He needs a safe place and so do you and if that means separate places so be it.
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The decision to place my DH, who was becoming increasingly argumentative, anxious and combative, was incredibly hard. My kids are all in their 30s and with young families (babies, elementary school ages). It no longer felt safe to have him at home with the kids and me, and driving him was getting scarier as he would threaten to get out of the car. I made the decision to place considering his and my safety (plus i hadn't slept for more than an hour or two in a row for at least a year) but also, if something happened to me, even a short term illness, I had no options! My kids absolutely couldn't care for him with their children. My mom - 93- always said to me when my dad had dementia, that if something happened to her, I'd have to step it up and care for him. I loved my dad, but the fear/worry about how to do this while working, caring for my DH who had the early stages of Alzheimers at that point, and being part of my grandkids lives, scared me to death. I didn't want to do this to my own children. So, because of all of these reasons - I sadly placed him in May. I see him daily, except for the one day I care for my infant granddaughter - sometimes spending whole days if he is not well or super agitated. I still feel like his main caregiver, still very involved in his life, but I can sleep, see my grandkids safely and know he is settled if something should happen to me. The kids won't have the burden of finding and helping him adjust to a new place. None of this is easy, all of it is crushingly sad, but this is how I'm trying to survive. Some days, TBH, the sadness seems overwhelming and the life I'm living seems like my worst nightmare, but one day, one step at a time, and lots of prayers gets me through.
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I haven’t had to make that decision, and I hope to keep my DH home until the end, but who knows???????? I think if my husband was incontinent and refusing to wear depends no matter how much I tried to help, that would be time for me to consider placing him. I could not bear seeing him in clothes soaked with urine. I would hope a facility would know how to handle this.
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Please find out if the memory care facility you use will know how to handle incontinence, especially if DH is uncooperative about being changed. The MC place should know how to handle opposition. Assisted living memory care does not do well with incontinence in my experience. Choose a specific Alzheimers place that can handle your specific needs. You will be paying a lot of $$, and your DH should get specialized care.
I wish I had put DH in MC earlier so he could enjoy the socialization and outings. He still enjoys watching everyone else. He was miserable with me at home even tho I know he loves me. He would not let me change his pullups without a fight. His personality changed with the interaction with others. Incontinence changing is still a battle with the aides, but the good ones know how to get it done.
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I have experienced most of the same things that are mentioned here pretty much all of them. Sort of the final straw was incontinence and not being agreeable to wearing disposable underwear.
the shoe sort of fell when my mom ended up in the hospital and I was able to get her placed into a facility. She gave almost no resistance at the facility. She’s been totally cooperative ever since she got to the hospital with wearing her disposable underwear. She likes it there. I am so thankful and it is so amazing. It’s better for her and it’s better for me.
sorry you’re having to go through this and hope things work out for you. There are a few people on here who still have behavior problems when their family goes to a facility. But usually that can be worked through by getting a geriatric psych admission and getting help from that direction, which was what I planned on trying to do if my mom resisted the facility, but as I said, she loves it.
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I found that the vigilance and work required to keep my dear husband at home was more than I could bear. Being on duty 24/7 every day had sucked every ounce of resilience out of me. Despite very kind and willing family members and friends, my sense of isolation and sadness was crushing me. I still can't shake the sadness but I do find my nervous system has begun to settle down. Fortunately, my DH has made a pretty successful transition without too much upset.
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I placed my DH in MC four months ago. We are on year two. He was placed because he was becoming aggressive with me and others. It was more verbal abuse than physical. He slapped me on his arm to stop me from pushing him away when he tried to scream in my face. He spit in my face and verbally degraded me. The police were called the last time he was going crazy and they said he was not safe to be in the home. I had him evaluated at a geriatric psych unit and they said it was not longer safe for him to be at home. He is a very social person. He is thriving in MC. He has made friends and when I come he is always looking to see what activitives were going on. He even has a girlfriend. He was 68 so it was very hard, but I know I did the right thing.
6
Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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