When is it time…

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Hi all! my mom was diagnosed with late stage Alzheimer’s 2/23. Was a shock and so I moved my two kids in to her home and didn’t realize the extent of it until then. Well here we are a little over a year later and her progression has become severe. I quit working 8 months ago to take care of her 100%. Up until recently she was still physically healthy and could do things (adls, etc) with my guidance. Could walk outside and be outside watching birds , picking up leaves in the yard. That seems to be coming to an end just like everything. But I want to keep her in her home as it’s awful to think of her going to a facility. But when is enough enough. My sanity is wearing thin. She’s getting agitated more and more and I’m not sure I can do everthing for her. I have guided and helped her til recently but it seems to be getting more challenging for her just to do basic tasks. I debate getting a caregiver to come in for a few days but will my mom be ok with that or be more agitated. Ugh I don’t want her to go to a facility but ….help. Is keeping an alz patient at home til the very end really an option?

M1

welcome to the forum. Talk to her docs about medication for the agitation, that may help some. As for keeping her home: best never to make promises, as circumstances change, and some people respond better to professional caregivers than they do to family. It's probably worth researching facilities near you, and looking hard at finances: do you need to qualify her for Medicaid?

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yea she’s already on meds for agitation. She doesn’t qualify for Medicaid so her hard earned life savings just seems to go up in smoke with the crazy prices of memory care facilities and assisted living facilities. It’s so sad for our elderly population. Work your whole life. Save and do good and then give it all away for 200sq ft studio to wait and die and not even know your family. Sucks! Thank you for the reply.

mabelgirl

I’m in a similar situation with my mom. It’s not even a year since she came to live with me but for her well being and my own , I am seeking to get her into a facility. My mom’s agitation and aggressiveness is very draining on me(she’s medicated). It’s hard for me to accept that I can not provide her care till the end. There are days where she is pleasant enough but they are few and far between. If only she stayed pleasant I think I could handle it with home care assistance. However, I agree with others who have said it’s time when you first ask yourself the question whether it’s time for a facility. Your own internal alarms are awakening, I feel.

My mom has worked hard all her life but not saved a dime. So she’ll hopefully get some Medicaid assistance soon and even then my siblings and I will have to chip in the remaining amount, which will start a whole other issue. Be grateful your mom has prepared for herself and has the means to ensure she is taken care of and not left a burden for you or your siblings to deal with. I’ve told my children and grandchildren that God forbid, I need the care my mom does to not hesitate to move me into a facility and visit me often. I’ve saved in order to have a comfortable life without burdening my legacy. You are NOT abandoning her or throwing her family connections away by moving her to a facility. You are having to decide what’s the best for the entire family.

Prayers for wisdom and peace.

psg712

Agree with evaluating how your mom's behavior and loss of ability affects the whole family. How are your kids coping with the changes in their grandmother?

The two biggest factors that influenced my family's decision to move my mom into a facility were her need for 24/7 supervision and the effects on my school-aged son as he would experience her decline and unpredictable behavior on a daily basis right in front of him.

It's a hard decision. We had caregiving experience with my MIL, who lived with us for the last seven years of her life and needed progressively more assistance with basic needs as time went on. My DH was able to work from home at that time; even so, during the last year we did hire some part time help so that he could actually do his job! Our situation is different now: DH no longer works remotely, I also need to work outside the home, and mom would definitely not be safe at home alone. The needs of a PWD are much more complex than that of a typical elderly person.

Every family has different circumstances to consider. Almost no one rejoices when they place a loved one in a facility. No facility is perfect, you still need to stay closely involved, your mom may struggle to adjust. I can say though that this was the right choice for my mom - and for us - she is secure and at peace with the routines there, undisturbed by the bustle of working adults and an energetic preteen boy. She is 10 minutes from me and still very much a part of the family.

I hope that you find peace with whatever you decide. Transitions are hard. But with dementia it seems we are often making transitions to new behaviors, new needs, new issues of our own that can affect our ability to provide care. Blessings to you.

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Thank you all for the kind comments. I’m the only child so I mentally want someone to tell me what to do. Sort of. Only because why can’t she live out her life in her home. And getting caregivers in more frequently? Either way, it sucks.

MarieES

https://alzconnected.org/discussion/comment/207691#Comment_207691

First, know you are not alone. There are many of us caring for a parent. I've been living with and caring for my mom for 10 years now. Things have progressed slowly, but she is pretty much living her life as if she were young, with my dad, her mom and little kids still here. She's 96, dad's been gone about 15 years, and 7 of her 9 children are ages 58-79. I was searching for help recently, to cut down on her frustration and mine. I was given the name Teepa Snow to Google and watch her videos. I found them very helpful. Some of my trying to help my mom was just frustrating her. Teepa helps you understand what's happening to their brain and how you can best respond to situations. Like when my mom says she wants to go home, we were telling her she was home. She's lived here since 1955. She is most likely trying to say she wants her youth back. She sees herself as in her 20's. That's why she asks for her mom and thinks she has little kids. She is much more happy when I tell her this is my house and you're staying with me while they remodel your house. The stress is less for both of us now. I don't know if you can benefit from Teepa's videos, but I have learned a lot from watching them. Remember, you are not alone and can reach out to local support groups or forums like this. I wish your family the best and pray for peace in your future.

slfields1

I’m also an only child caring for my mother in her home. There’s no way I could do this without caregivers. I tried facilities but they are so understaffed that I still had to spend hours with her every day or get a caregiver to go help her. She begged to come home so I got a live-in caregiver. That worked fine until mom’s needs increased. So I started hospice care at home with monthly respite care for a few days in a facility (for my sanity). Now I’m hiring caregivers to cover overnights and daily breaks so my live-in can get some rest. Finding reliable help isn’t easy and is time-consuming. The cost is nearly the same as a facility but mom is where she wants to be. I’ll keep her home for now but I cannot promise for how long.

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slfields1- are you her full time caregiver ? And then get help ? How long have you been caring for your mom in her home?