My mom has early dementia, I can’t keep going to her house every two weeks for two weeks. I hate leaving my own family, but she needs me. We tried in home care but they keep calling in sick, Covid is everywhere. I don’t want to put her in a facility yet because she is just a bit forgetful and I would rather wait till it progresses further. So how much of a change is it?
Lots of stress in the house. your life will change dramatically. Just warning you.
i wish you to be extremely kind to you too.
hug!! :)
I moved my sister in with us when she lost her job because of poor performance (which ultimately turned out to be due to very early onset ALZ). She was always by nature a shy, good-natured person and, with the exception of some bad drug reactions, stayed that way for the rest of her life. She lived with us for almost 4 years and the only time I regretted was the short time we placed her in memory care. At least at home, I could oversee her care, see her in the mornings and evenings and weekends when I didn't work; give and receive lots of hugs from her; know she was eating properly and that her prescriptions were filled and given properly; and keep her stimulated until she reached the stage where she could no longer process her environment. YES, there were moments of tremendous frustration; YES, there were moments of extreme despair; and, YES, she became the center of our lives in many respects. And yet, there was lots of laughter and singing/dancing along with Alexa! My husband took his love for me and extended it to my sister. This brought us that much closer together. My sister has now been gone for a little over 3 months and despite all of the demands she placed on me, I miss her terribly. For me and my family, the choice to have her with us was the right one FOR US.
and your love moved me to tears.
I have been happily married for 42 years and making a decision to keep my mom in our home shortly after our retirement has been the most challenging, unhealthy and stressful situation ever. We think we can do it because it’s mom. As women, we often think we can do it all. We wear our heart on our sleeves. Look at the Waltons” they did it! BUT We can’t. We don’t have 7-8 extra /bodies hands in the house helping with the chores. From the very beginning of the move, mom changed her mind! Almost immediately after she arrived to our new home 6 hours away. That’s right. And when she called back at the senior apartment she left, to return, the apartment bldg put her on a 3-5 year waiting list if she wanted to return. She quickly went into a deep depression, expressed loosing her independence, her apartment, friends, privacy, etc. We got her out of huge debts (at our own expense), customized our home with all of the bells and whistles in order to fit her needs, but she was so unhappy, angry, depressed all at the same time. We designed our home so that she had her own personal handicapped accessible bathroom, huge closets in her bedroom, office space, etc. I managed her healthy meals, Dr appts, errands, shopping, cleaning, and cooking. Lately she is now in need of personal hygiene care. I found the bathing and hygiene issue a very sensitive one for her. She refused the help but needed it. Nothing made her feel better. She has failing health (asthma, HBP, knee replacements, and emotional issues that have been unresolved since childhood. My husband and I are not able to visit our children or take a weekend to visit friends or family. It’s like being caged in with no help. I’ve been unable to find help so we can get away, and the help is quite expensive. Mom requires constant and consistent help with everything. But according to her, she sees herself as independent and not in need of a lot of help. And when she doesn’t get what she wants she is depressed and sobbing. She tells my siblings (all 5) and out of town how she is unhappy and that has divided our family. Can’t get the help but a bunch of opinions about what we need to do so she can be happy. I receive no assistance from my siblings, other than mailing a shopping errand every now and then from their home. My sister has kept her once in 3 years. And 1 weekend so she could be in line (400 people) for a senior apartment. This situation has weakened our marriage. I am drained and physically and mentally empty. We began taking care of mom literally 6 months after retiring 3 years ago. My husband and adult children need me and say they are worried about me because my own mental and physical health is going down. And it is. I can’t sleep and constantly filled with anxiety. Please reconsider this idea.
so many loving people with such kind hearts, doing what's right (whether that's caring for LOs at home, advocating for LOs in a facility, etc.)...and getting destroyed along the way...
...with all the stress, emergencies, problems...
hug!!
then, you have the super rich, who have access to super facilities, or super caregivers, or an unlimited number of caregivers...
of course, sometimes getting good care has nothing to do with money. (but sometimes it does).
you can be poorer, and simply be lucky, that somehow things worked out, caring for your LO and you didn't get destroyed along the way.
...all sorts of factors...the stars lined up.
i'm sending hugs to all of us! :)
and i wish us all, to somehow find a way to live your life, loving others AND yourself.
My husband and I are her only caregivers. My father and only sibling have passed. All of her siblings are deceased. She "burned her bridges" with in-laws years ago. She tells me she not a "people person" and doesn't want to go to assisted living.
I'm 66 and my husband is 67 and both retired. We should be enjoying life while we still have good health.
I am considering AL for my mother, at least a period of respite.
I was just diagnosed with alopecia and I believe it's stress related.
For so many reasons, my vote is to explore all other avenues before moving your mother in.
Just my two cents worth.
Good luck !
There are also lots of tips and advice.
Also, consider joining the Alzheimer's Dementia Caregiver's FB Support Group. It is an excellent place for advice.
https://www.facebook.com/groups/dementiacaregiversupportgroup/?ref=share
I agonized with the decision re my mother after she no longer had the strength to get up and use her walker at her home. I recall pacing up and down in my driveway at 2 AM for about an hour asking the stars what I should do. She was living 3 hours from me with my Dad in their own house. I am the only daughter. The inability to walk meant she could no longer physically get up to go to the bathroom and neither my Dad or my two brothers were able to deal with that. Home care at her residence was not an option because their was no female back up in the event of a no show. She was about to be released from rehab (which BTW was worthless but another story) and a decision had to be made - come live with me or go to a nursing home. What I learned about the “care” provided in the rehab (which was a nursing home), combined with COVID concerns was enough to make the choice clear.
I think a few things are really important to consider. Do you have the physical space? Do you have the time and are other family members on-board with it and willing to occasionally help? Do you have the financial resources to buy equipment/supplies and hire help. (Thank God my parents had the resources and forethought to buy LTC insurance.). Once your mother is in your home, agency help will work better because if the aide calls out sick at least you can fill in until they come back or a replacement is found. Can you get the necessary equipment- hospital bed?, Hoyer lift, etc.
My mother is bed bound, so I don’t have to worry about falls, wandering or burning down the house. But I had to get the above equipment, learn how to use it and keep up with adult diaper changes, using the Hoyer to move to a chair, and bed repositioning. My mother is not in dementia and does not have Alzheimer’s. She recognizes what a role reversal this is. She is “happily confused” at times (as one poster put it) but feeds and grooms herself. We do help her dress and do bed baths. I can just walk across the house to visit her when the aide is here. I think I would be spending a lot of time on the phone and driving if she was in a facility. The phone calls would likely be with the staff about care issues. My mother is hard of hearing has a hard time carrying on a phone conversation.
Without hiring outside help, I would be completely tied down. As it is I do a lot of the work since 24 hour home care is financially out of the question. My mother is not always her sweet self and sometimes does her version of Dr. Jekyll and Mrs. Hyde.
Hospice is not an option unless your loved one medically qualifies. (My mother does not.). Even then, it does NOT substitute for a home care aide. Hospice does not typically come every day and their are limitations to the help they can/will provide.
Lastly, for those who have to or decide to go the facility route, it is not easy street either. There is the driving distance, wondering if they are eating/sleeping/feeling ok. Are they lonely or happy? Are they getting quality care? There are the phone calls and visiting hours and COVID shutdowns. And there is a big cost difference.
Make the decision that works best for you. You are not “locked in” to one solution and can try something else if needed. Best of luck.
PS - there are moments I wouldn’t trade for anything. Like when we tried to teach her to say Que pasa to our Spanish speaking aide. She kept saying Que pasta😄. Hubby answered: Al dente ; )
Later it will be huge. I know from first had experience. The messes, the laundry, doctors, meds, forgetfulness, aggression, falls, my own medical needs, my husband’s medical. and a developmentally disabled BIL who we care for. The only thing I did not worry about was her wondering off because she was barely mobile.
Both options are going to be lots of work. I suggest making a list of pros and cons for each option. Look at these and choose the one that least impacts you and your family. Good luck
I work at an assisted living facility & with some of the resident’s, I could be around all of the time because they are pleasantly confused. Other residents, it is hard to be around them for even 5 minutes. It is such a huge undertaking for most adult children & believe me, just because an adult child does not choose to take in their parent has NOTHING to do with loving them! Caregiving is not for everyone ✌️🙏🏻❤️
I researched Alzheimer's. Made improvements in the safety of our home. It was a fairly easy transition. Problems with anger that my sister was experiencing are non existent as our home is more peaceful so it helps with my mom's anxiety.
I only work 2 days a week and my husband cares for her on those days. It was his idea to bring my mom to our house. I live in the neighborhood I grew up in so my mom still recognizes things. She isn't incontinent yet but I figure it won't be too much longer till that happens.
Are things easy? No, but we make it work and find humor in many things that happen. I have moments if I wonder if I can handle this. It passes. I know things will progress and get worse and I will continue to care for my mom. My siblings are supportive and my adult children are willing to stay with her when we need a break. We will get her assessed and put on Medicaid in the near future so we can utilize some in home help when we need it.
I know it isn't for everyone but it is the path I chose and I don't think I will ever regret taking care of my mom. I should mention my in-laws have lived in a small apartment on our property for 27 years. My MIL is 83 and has dementia and my FIL is 87 with health issues.
Lots going on but I am content with my choice.
As you can see from the responses below, there will be many people who will tell you this is impossible and you can’t do it.
I’m here to write a positive and supportive message. You can do it! It will be hard, but you will be okay. You will need to adapt your home and life, but helping someone when they are truly down and unable to help themself is one of the most rewarding things you can do.
If I did it, anyone can!
But, if you decide this is too difficult for your situation, that’s OK too. There are no wrong answers.
if you ever want any positive messages or tips, please feel free to send me a private message.
There is so much bitterness and naysaying related to caregiving on this forum from people who never personally attempted it. Don’t let them take the wind out of your sails.
It's far easier to visit her or take her out to dinner than to be her caretaker, especially if she becomes incontinent. That way you (and your family) can enjoy her for as long as possible.
There were plenty of hard times and schedule juggling, but I wouldn’t have wanted it any other way.
I had school children at home and this was an excellent lesson for them as well. Instead of “taking time away from them” they learned new skills, were challenged with problem solving and grew more empathetic.
Savor the time you have with your mother. Although she has been there for you since the beginning, she cannot be there until the end. Cherish the time you have.
My mother has early on-set dementia and was diagnosed at the age of 55. By the time she moved in with me she had no money, no job, no car, or anything to help support here. Due to her age she had no social security and no place to live. Her fiancé was dying of lung cancer and he needed care as well. I had two small children at the time and we didn't realize the amount of care and struggle we were about to take on. At the time she moved in we knew she was having cognitive decline, but had not been diagnosed so it was early stages. She was in complete denial with her illness and that took a huge toll.
Her depression and anxiety became so much worse when she lived with us. Her behavior became erratic and dangerous. The arguments about why she shouldn't be driving (she had totaled her car earlier in the year), her lack of cleanliness and self-care was a lot. She would leave the house and try to hitch hike places she wanted to go or ask my neighbors to take her places. My husband and I worked full-time so she spent many hours home alone and we didn't have the money for in-home care. We had to hide our car keys, put a lock on our bedroom door to hide her sleeping pills (she would take too many and not realize it). She became aggressive with my kids because she didn't realize what she was doing. We had her on depression medication and dementia medication but it didn't help. Eventually she became manic and a harm to herself and others that we had to put her into a psychiatric facility and then into memory care. We just didn't realize what the right medication was for her at that time.
My kids felt the stress and changes a lot. They also started to become anxious and had issues at school. My husband and I were fighting a lot and it really took a toll on our marriage. There are many people on this site who do take on full-time care giving and while there are many struggles there are some great memories that they build. However, their life becomes your life. You mentioned having a family so I'm assuming you have a spouse and kids. You have to weigh how much you are willing to give up to take on this responsibility. It will for sure change your lifestyle and have a impact. Keep in mind you can still have a relationship with your mom even if she lives in a facility. My mom's depression improved so much when she moved. She had friends and activities and a life I wasn't equipped to provide her. I wish you nothing but the best in making this decision because we all know how difficult it is.
i love your words.
So- no, i would not place her because of Covid policies
But- you and your family will make a choice remember, that you can change that choice
prayers to all
Why not consider senior living near you? You can monitor her loss of clarity and make decisions about assisted living if the dementia gets out of hand.
You will likely face that in a year or so anyway. Check the proposed facility well.
If she has people her age and condition around her and attendants that are well
trained and stimulating entertainment she will generally be happy. You are not
abandoning her; If she moves in with you very likely everyone will become unhappy.
I moved her in with me almost 2 years ago thinking her life was coming to an end and I didn't want her to die alone in the facility. Because of COVID we were unable to visit her and a doctor had said she had given up and the end was near. My life as I knew it is pretty much over. Having said this, I would do it again. This will not go on forever and, for me, I want to be able to say that I did what I could for my mom at the end of her life.
Do what works for you and your family, Placing her in a facility might be the right decision for your mother and for your family. Bringing her to your home might also be the right answer. There are no easy answers on this journey.
God Bless you. He sees you and knows the difficulty of this decision. He promises He will never leave or forsake us. Pray for guidance and He will not let you down.
Do not do it.
I would suggest telling your Mom that you are both going to check some out together, pick some you want to visit, they will usually provide lunch for you, it gives your Mom a chance to say hi to a few residents and maybe ask how life is living there, give her some re-assurance that other people like it , that she could too....Maybe ask a resident during lunch how the activities are there and what they do, so your Mom can hear.
Change is hard for all of us.........
You have a life and a family... your Mom had the same thing...
It is not wrong to make sure you find a nice place for her to age in.... socialization is very important, she can have that and have conversations with people her age that have lived similar lives, they can share that together.
You don't have to place her in a big facility where you feel she will be lost, find something that feels more intimate and to her liking.
You and your family can visit anytime you like and you can still take her back to your home for a visit or an over night after she feels comfortable there.
I have worked with the elderly for many years, they know in their minds and in there hearts that this day would come at some point, most people don't want to burden their children, is how they think.
You have a life to live too and you may not be prepared for what happens after she would move in with you, as she ages she will decline, then you will really be stressed out and it will be even harder to make the move because then you will feel even guiltier than I am sure you feel right now.
Placing her in a nice place will benefit the both of you..... they look forward to your visits and there is calmness and you can focus on the love you have for her without worrying about the guilt.
God Bless..........Pray about it..........
Have a plan in place for more helpers - volunteers from family, friends, members of faith community... and paid help - so you can get some time off. You may not feel the need for time off initially, but having others in on caring for your mom helps if you become sick or injured.