I've only been dealing with caretaking for about a year, prior to that my parents were fairly self sufficient and my stepdad handled my Mom's dementia. Six months ago I helped them move into AL, even though they aren't actually using any of the AL services, instead they had a separate caregiver company helping out. Stepdad's congestive heart failure won the battle and he passed away three days ago (peacefully, in his sleep while my Mom was sitting by his side). Her dementia has progressed with all the changes, and recently I posted a question about her new symptom, aggression and anger. I am going to pack up her things and bring her home with me (they never would move to my town and live over 1400 miles away). Hubby and I are going to try having her live at home with us at first because I believe she has the best chance to be content and regain some equalibrium surrounded by family. (she hates the AL community she is in right now) There are only a handful of people she remains calm around, sometimes a caretaker is OK, but mainly it's me and a few long-time friends....and I'm getting ready to move her away from her long-time friends. I am terrified that I won't have the patience needed. I want to get her set up on a schedule so she can do the things she enjoys, and I hope that she will accept care givers as part of our routine because I will need to have some time away. There are no siblings. Now I'm rambling...I guess I just need some words of encouragement. I'm NOT going to give up my life completely and I still have kids at home, work etc..., but I AM going to do what I can within reason to take good care of Mom.
Then also ask yourself, would she want you to sacrifice your life to care for her. She may be one of those the would never want you to give up so much. My mom is one of those and heard many times when I was younger that she never wanted any of us to care for her. But, it happened anyway. For me, it was not guilt that took me there, nor did I experience any guilt when POA made the decision to move her to a memory care facility.
Do what you know is best for you, and the care she will receive is also the best for her.
On the flip side, it also makes my decision harder. I have found a very nice memory care facility five minutes away, and I am planning to place her there at the end of June after we go out of town to bury stepdad. When we get back to town directly from the airport, I was going to have someone else who she knows fairly well (my stepmom) take her to the memory care and I am going to make up some excuse as to why I need to go elsewhere. Like business trip. Most likely Mom will be very disoriented anyway, and she might not even recall living in my home for a month and a half.
I know this decision is best for my husband and children, but I am STRUGGLING with guilt. Especially since the last few days Mom has been thanking me for taking her in and being very appreciative and humble.
How do I deal with the guilt?
What is your primary reason for wanting to do this? If it were me I would leave her where she is and move her to their memory care. Your first consideration has to be what is best for your family. Your husband, your kids and YOU! Unless we care for ourselves we will not be able to care for our loved ones. Forty percent of caregivers die before the one they care for.
You are blessed with a solid, harmonious home life with your husband and teens. Yet you seem determined to run headlong into a situation where the family you nurtured all these years is downgraded to 2nd class citizens. In their own home.
Your compartmentalization will get a workout when mom disrespects your husband and teens. And she will. If you speak up and defend them, you'll launch a stressful spiral of Alz-talk. If you go mute or concilatory (and expect hubby and teens to do the same), they will feel devalued.
Mom's reaction to aging and illness will add baseline stress, too. The aging thing is b.s. Everybody ages. Including her!
And mom's problem with illness is a huge red flag. The last thing you need is a grown woman acting like a brat every time one of you has a cold, a stomach bug or a back spasm. How about when a teen is on crutches from a sports injury? And if you & hubby are positive you can live the next XX years without a sprain, fall, work injury, laid up from a car accident or diagnosed of a condition that requires surgery or treatment, let us in on your secret!
When your father died, mom lost her lightning rod. She's angling for you to be the new lightning rod. This is unhealthy. And the part of you that can't take more than 3 days of her knows it.
It's so painful to watch our parents decline. In almost all cases, they need help from professionals. What they need from us amateurs is love and caring and oversight. If it's from a separate household, so be it.
I believe the biggest issue will ultimately be that she will not be happy having caregivers be a part of her daily routine, that will probably be the make it or break it factor. If she can't accept that I will not be by her side every minute of the day, then she will be going in a facility. My plan is once we move, to gradually shift....so at first I will be spending a lot of time with her, then it will be me, the caregiver and mom, and incrementally I will attempt to phase out more and more. FINGERS CROSSED THAT THIS WORKS, and hopefully this agency that I hire will have lots of experience coming up with contingency plans.
Best wishes to you through this transition and also finding the support you and your family will need.
I've discussed with her that if this doesn't work out for everyone, we will find a place of her own, not that she can remember the discussion, but maybe if I say it enough some part of it will sink in, and I have the support of pretty much EVERYONE else in my family (and friends) as far as placing her on her own in a facility. So I believe if it comes to that, I can reach out to other family members for support and maybe even "physical" help of placing Mom in a facility. Believe it or not, having others who know her well, agreeing with me that she might ultimately be best off in a facility has brought me great comfort and hopefully strength when that time comes.
My Mom has said repeatedly that she has never lived alone, she's always been with a husband, roommate, or me growing up....when I ask her if she'd like to live with us or close by in her own place, she never choses the "on her own" option, saying that she likes being around people. The reality is that she likes being around people as long as they are not all using walkers, canes, or wheelchairs....she can't handle that and she's ALWAYS handled illness and aging poorly. So some of this is her personality and personal fears. AND these same fears will make it somewhat difficult when I try to get her engaged in the local adult activity (daycare) center, but it comes highly recommended. I think Mom would actually be more receptive to activities involving all ages, so I will have to get creative. What she doesn't do well is SIT, never has.
Plus in the beginning her problems were all physical, the dementia crept in later. My mom couldn't get around on her own, so all those problems that people have with shadowing, wandering, and battles over continence and hygiene never applied to us.
Although this is more information than I typically share, my mother is still with us because I am so worn down that I do not have the inner strength to ask her to leave. She has arthritis and does not drive so she cannot live independently but she does not have dementia and refuses to believe that she needs assisted living (even though that what she has in our home). She is established here now and undoing that takes more energy than I have at the moment.
When my dad died we talked a lot about her not being able to stay by herself with us being 1000 miles away. It was a very complicated discussion that took place over several months. We discussed options that included a retirement community or living with one of her children. She chose to come live with my husband and me.
I wanted her to be happy and cared for but there were a few vague warning bells in the back of my mind. I pushed them aside because I had been living with her in her home and hadn't seen my husband (who was working and had to stay at home) for 3 months and wanted to get home so badly. I thought that it would be easier once I was home. I was wrong. I realize now that there were a lot of interpersonal dynamics from my childhood that have come back into play. With 20/20 hind site, I also realize that living in my home should never been an option. Getting out of the current situation is much more complicated than it may seem. If I had it to do all over again I would have made different decisions. At the time, I thought I was doing the right thing. What seems to be good for my mother has not been as good for my husband and me.
I apologize that I didn't give you the encouragement you were seeking. I suggested that you probably had better skills than I and so would do better than I have. I think I was responding most to your statement that you were scared you weren't up to the task. I sincerely wish you the very best.
Dementia moms aren't easy and then they get worse.
They go down fast, then level off for a while. It really is draining
Is it hard to recognize when those boundaries and limits have been reached? What am I missing here?
ArmyRetired, I spoke to each family member, hubby does not think it will work, but he is willing to give it a try. I did not push him, he offered it up. I will keep in the front of my mind my kids....they are teens in the higher grades of high school, and I only have a few years left with them at home, I want those few years to be GOOD ones, so I will make it a priority. I don't want to be miserable or my family to be.
RainMom, you made some great suggestions. Currently my mother is very active and works out at a gym with a personal trainer, she lifts weights and is not at the "Grab bar" stage, but I definitely need to consider slippery floors and other safety issues.
I don't have a detailed plan, but I am lining up resources and giving a lot of thought to the transition and "my vision."
I have a friend who's Mom has recently moved to town in a similar situation, and she is going to send me a list of her Mom's doctors, the senior daycare, the dementia support group she belongs to etc.
I also have an agency that (for a fee) helps coordinate the care of elderly parents, additionally they have caregivers, also offer classes for caring for dementia relatives etc.
Over the past four years I have been checking out facilities, and I will continue to do so, and I will get on a waiting list...great suggestion!
I will take your words to heart and I appreciate everyone's feedback. By no means do I think I have it all worked out...
I am not dead set on having her in my house, I am simply going to give it a try. All the paperwork and POA already in place, my stepdad saw that.
My dad died a year ago and I brought my mother to live with my husband and myself. It is now a decision that I regret every day. I didn't intend to give up my interests either but it happened. I had plans to keep her active and engaged with others her age but she refused or was so difficult that it couldn't continue. My husband is completely supportive but it is hard on him too. We have lost our privacy, our ability to eat what we want or go where we like. She inserts herself into all our plans and decision making. Since my mother refused to get involved in any other social activities, we spend most of our time entertaining her and trying to keep her engaged.
You of course, may have better skills than I so you may manage far better than I have. If you have any doubts now, however, it's your inner voice warning you to proceed carefully. I also had those doubts but pushed them away because I wanted my mother to be in a loving supportive environment. I couldn't imagine that it could be this difficult.
I apologize for being so negative but you are about to make a life changing decision for you and your family. Please consider what is good for you while you are considering what is best for your mother. Best of luck to you.