Should I consider placing Mom in an Alzheimer's care unit to preserve my own health?
I promised my Mother many years ago that I would never place her in a nursing home. My Mother is getting worse with Alzheimer's, I am so worn out physically, and really even more emotionally. I myself have health issues. Should I consider Mom being placed in some kind of care facility, and how would I approached this with her. This is the most difficult decision I have ever had, and it's all on my shoulders, all alone. I love her so, and all I can think of is how I promised her those many years ago. I'm just so, so tired.
I certainly understand your struggle, and you clearly meant what you said when you promised your mom to never place her in a nursing home. However, what you were really promising is that you would be there for your mom and only do what you believed would be in her best interest. In the end, that is the best thing we can do for our parents. One never knows what life is going to bring. In the abstract we would all say we don't want to end up in a nursing home, but nursing homes exist for a very good reason and many loving families end up having to put relatives in nursing homes because that is the best place for them to be. I might add in your case, it may be your mom belongs in an assisted living facility, rather than a nursing home, so you may fulfill your promise after all.
The decision about when is the right time to move a parent with Alzheimer's to a care facility is always challenging, but keep in mind you are not looking at putting your mom in a warehouse. As someone's dementia progresses, it is important they are in a safe place in which they have care when they need it 24 hours a day, and where they can continue to be active, both physically and mentally. It requires real skill to know how to continue to keep people with dementia active, without asking so much they feel stressed. At some point it is simply not possible to provide all this yourself, and if you allow your guilt to get in the way of making the best decision for your mom, you are doing her (and yourself) a disservice. If you take the time to carefully look over the various facilities that can help your mom and find a caring place with a staff who have the training to help her, you have done everything you can do for her. It is important to keep in mind that if you wait too long, her memory will be so impaired that the facility will never become familiar and she will never feel at home there. Once she is there, you can spend as much time as you like with her, but as her son rather than her caretaker. This may also help her to not feel guilty about having to trouble you to get her needs met. If your guilt continues to wear you down, I would strongly suggest a few sessions with a mental health professional to talk it through.
This is the first time I've looked and found resourses just for me as Mom's caregiver. It truly does help in every way knowing you are not alone, and others are experiencing the same things regarding this terrible disease. Dr. Robbins has been a God sent to me. My very first question, and my very first answer has already put my mind at ease will this so difficult decision. The guilt has been tremendous, but reading other answers to other questions, it's like reading my life. I thank God for this website, and all the participants who are reaching out their hands, and especially their hearts for people like me. I've been so lost, but now I truly have a place to go to find answers. Thank you all so
It's hard but it's easy. It's obvious, but it's also hard to face...
The answer to your question sweetie is this:
If you can do it, you can, If you can't - you can't.
The bad news is that YOU ARE ONLY HUMAN. The GOOD news is that YOU ARE HUMAN, and YOUR MOTHER is HUMAN, too...
There is more to loving someone than taking care of them. ANYONE can do the physical work of care-giving.
But YOU are her CHILD, and NO ONE CAN TAKE YOUR PLACE IN THAT ROLE. NO ONE ELSE CAN LOVE IN JUST THE WAY THAT YOU DO.
So, in my opinion, that's what YOU should do - the one thing which ONLY YOU can do. Be there for her as her CHILD.
Wherever She NEEDS TO BE.
"Mother," to whom you once made a promise ... is no longer, just as "Child," who once made a promise, (and is now inexorably changed) ... is no longer...
The above comments are great. I so applaud Dr. Robbins that he noted the promise was to take care of the parent. There are many types of supportive communities available. Assisted Living communities are wonderful alternatives! But Dr. Robbins was wise to advise us to do due diligence to check out one's options. Call a professional senior move manager or geriatric care manager for help and information about residential community options. An older person's great fear about "nursing homes" may not be living in a community but rather that if they are warehoused in a facility, they will lose their humanness: that they will be neglected or abused and diminished as people. Older populations who have not been in very high-caring facilities are thinking of patients/residents whom they've seen in years past: people forced to be out of bed but slumped over in a wheelchair drooling, ignored, and with others in similar condition hearded around in a circle in the hall near the nurses' station where people walk around them but never speak to them or touch treat them as individuals; or people who are beaten physically and emotionally by aides (and administrators??); or places where there is no one to ask if you could adjust the covers, help me go to the bathroom, change my bedding 'cause they were soiled--hours ago. Etc. The neglect IS still occuring today in many places. Care aides, in general, are among the lowest paid careers, with little continuing training or respect. If full-time skilled nursing at a high-caring community is not monetarily possible, then the adult's son/daughter/caregiver should look into respite care frequently (albeit, moving a patient with dementia, however, is disruptive). Getting help and taking breaks is the only way to take care of a loved one. The caregiver must take care of her/himself. The older adult, when younger, would never have wanted a child they cared for and loved to be in such termoil and be so heavily burdened.
I have early to mid stage alzheimers. My grandmother had alzheimers and my mother has it. I am now realizing in my decreasing state that if anyone in my family or among my friends had promised me this... knowing the bad days I have now with my memory, I would have no idea who is taking care of me at that point anyway. Seeing a friendly face a few times a week would be enjoyable. No gaurantees I would know it was you visiting... but I know the visit would be encouraging, loving and nice. Whenever someone would bring me food or medicine while I am there... if they smile and talk... I will smile and talk... it does not matter if I know them... because I can't remember their names anyway and faces are getting harder if I have not known them long. Do NOT kill yourself trying to give 24 hour a day care to a person who does not remember you. Visit her. Be a positive person in her life that loves on her. Keep regularly in touch (in the flesh) with her. In between TAKE CARE OF YOURSELF!!!!!!!!!!!! You will wear out far quicker than she will and she will appreciate having a pleasant stranger come and sit with her, talk with her, be with her. She'll feel warm and loved by this (RESTED) person who sits with her. She is not going to remember.... I'm sorry... love her, but know, if you do not take care of you, you will end up in the room beside her soon enough. Take care of you. DON'T beat yourself up. Love your mother... and in between visits... know that she is being well taken care of. Love and best wishes to you for loving your mother in this way for so long. It is time... the right time... for you to make some changes... for both of your health. She won't remember....you won't survive intact otherwise. Love to you. Joan
Don't wait to place your Mom! I did, and Dr Robbins is correct, Mom thinks she should be moving all the time, I visit her 2-3 times a week and she has half her stuff packed. She lived with us for 8 yrs, think I was in denial about her dementia as when I did realize I couldn't leave her home alone even for an hr, we had to have the "move to assisted living so I can become your daughter again" conversation 4 times, and both of us ended up sobbing. Mom didn't remember anything, but I had to go on Ativan for awhile. Now I am less stressed, still feelingguilty , but able to enjoy my life with less worry. Bless you for caring for your Mom, and good luck to you both.
So many great answers to this very heartwrenching question. I think the last was particularly apt in pointing out that the promise was most likely based on the largely outdated image of scary, uncaring places. I volunteer at a nice place and the care there is so very kind. I agree that if you can afford it it will ultimately leave you healthier to respond when you visit. Huge kudos to the person with memory issues who replied. Karma points! I just wanted to add that I think, while it's important to stay firm on one's principles, it's wise to be flexible with specific decisions because life is complicated and even Einstein said it would be foolish to try to solve new problems using only solutions that worked in the past. You might have a decision (such as your "no nursing home" one) that works just fine or at least well enough for years, then things could change and you have to give yourself permission to make a new decision that fits the specifics of the new conditions. I think you're on the right track.
After reading a few of your questions, I'm in the same boat. Mom's dementia is getting worse, and fell 3 times in 3 days, last one, ER, 4 stitches and so bruises, but nothing broken. Decreasing one med. that has proved to cause falls. I must give this a chance first. But I'm and Husband so burnt out, and I feel so guilty, but it's affected my health a great deal, and we have no life. Have a sitter 2or 3 times a week, to go to church, or just get out of house, or doctor's appointmen. But I'm afraid that a decision may have to be made before too long, assisted living, if at all possible, and close to my home to see her, keep in close contact, as lived with us for 7 yr. Guess we just didn't think about when it came to sickness and this point, what to do. We now are taking one day at a time, and getting off that med, and hope to see a big difference. And pray all day long to give me strength to keep going.
Placing my husband in a home has been financially punishing. But I can see that it's been the best, the kindest choice for both of us. People who gave me advice to keep him at home seldom understood what this involves - our home would have required extensive modifications, in-home care is more expensive and sometimes unreliable, and he still would have limited companionship. Even as his dementia progressed, my husband was at home for 4 years and I felt that all I did was feed him, clean up,and take care of his every need. I was frazzled and never had the time to just sit with him. He couldn't understand much, but he liked and still likes to hold my hand. Then physical problems and his falls meant placing him was necessary. Now I visit him 3 or 4 times a week, and we are simply together, even for a few hours. My energy goes toward finding things that please him, such as bringing in a fancy coffee drink. He is never, ever alone, and I can go out without constant worrying. I guess I am saying that nursing homes have many positives that I had not been aware of.
I'd like to just add that there is a middle ground. My father has a couple of old family friends who are very nurturing and unemployed come and be paid companions five days a week, divided into three for one and two for the other. He pays $10/hour for eight hours. Now, $80 a day sounds like a lot, but a good skilled assisted living arrangement is more. of course, she is not violent or soiling herself thanks in part to depends, but she is pretty far gone and she's okay for now. If its time to move a loved one, fine. But don't think that just because you're tired personally that there aren't other options. Delegate!
God Bless you magicx001; I'm struggling with taking care of both parents with dementia, one rather advanced. I thought I could move them in my house, but I don't think I will be able to do it and maintain my family, work and my sanity. Sorry, but the fact that they took care of me as a child does NOT compare to taking care of an incontinent, sometimes belligerent adult. A person (usually) chooses to have a child and it (usually) brings great joy to their lives. I'm sorry to say, watching my parents both deteriorate is depressing in the extreme. I find no joy in their suffering, and yes they are suffering with their confusion. I've told both of my sons to NEVER give up their lives. As long as I'm safe, they can visit as often as they'd like. That being said, I admire you for your determination. Your mom and grandmother are very lucky to have you.
Caring for a parent with Alzheimer's disease in the home inevitably reaches a point of compromise of risk and responsibilty. It is not sustainable in the long run. The costs are huge, the dedication unending, the strain, inmeasurable. A house cannot be converted into a clinical environment no matter how hard one tries. Care requires skilled and trained staff round the clock. A caretaker also has a responsibility to themselves, their family, their health. This is a stage in life that we prefer not to face and fail to understand that people suffering from dementia require a nursing facility regulated to protect and care for them. It will permit you the caretaker to visit and spend valuable time with your mother without the strain of being the only one tending to her needs. I cared for my mother for years and finally placed her in a nursing home. I felt terribly guilty at first. That lasted for a few weeks until I started seeing how my mother was coming to terms with the place. She is more relaxed, has people around her, notices what is going on, and seems to have adjusted quite well. I am also better for it. We have great visits together. It is the next step to take. You also have to live your life to the fullest. If her primary physician examines her and tells you that she is a good candidate for nursing home, you should move right away before her condition deteriorates, an injury occurs, or you become ill yourself. Seek out facilities in your area without appointment and visit them more than once to get a sense of the best place for your mother. What matters is the level of care they will provide and how consistent they are in their care. Pay attention to the staff and to how the residents appear to you in each place. Seek guidance in the process of admission. Get her affairs in order and proceed. Good luck.
I've been struggling with this question too, wish I'd read these answers years ago. Mom's only 65 now, in excellent health, happy (generally) but has likely had AD since her late 50's... I was thinking she was FAR too young to have it and only caught on to the problem when the wife and I split up and I moved in with her - that was about 4 years back and it's been progressing exponentially ever since.
The thing is, the neurologist never mentioned AD by name to me (nor her, understandably) and I suppose he didn't have to since it was pretty obvious. But I think without someone actually saying to my face "You're mom's got an incurable disease which you CANNOT care for all on your own", I've been totally in the clouds. Here and there I've heard 'counselling' and 'support groups' but being a grown man with an ego, I pooh poohed both. Wish I hadn't now.
Whoever mentioned the 'rainbow bridge' got it; Once you see the signs that it's time to find a facility, it becomes painfully obvious you've waited tooooo long. No longer can she stay at a sibling's house due to anxiety, anyone in her home (besides me) causes DAYS of drama, staying out more than 1/2 day will send her into a fit and I'm positive that moving her to a facility now will be devestating due to unfamiliarity. The end result is a failing battle to keep her comfortable and happy, all the while watching my own happiness evaporate with no light at the end of the tunnel.
Looking back I should've been planning from day-one... Putting in place some reliable in-home care early on, regular respite stays at a place she could become familiar with (and eventually call home), and keeping my own sanity first'n'foremost through those respite stays would have been the better course to take. Live and learn I suppose, but God knows I hope I never get a chance to use the knowlege again. I guess I can take pride in having done my best with what I thought was right but by dithering I've effectively boxed us BOTH in.
As a nursing student who's cared for Alzheimer's patients for over 5 years...I can say this is the most difficult thing I've ever done, period. My current assignment as a live-in aide, 5 full nights/week (5 PM-7AM) plus 2 full days is ending soon as the patient is going into assisted living (he really needs a nursing home but the family doesn't want that). I love this man dearly, but I swear this has taken 10 years off my life. There is little family support--every thing is dumped on me as I am an employee. Yesterday was Christmas and NOBODY CAME TO THE HOME OR EVEN CALLED. It is depressing and sad. I hate this disease. I have learned so very much but sadly I cannot do this kind of care any longer. It is just too much for me emotionally even as a future nurse. Good luck to all. I never judge anyone making these hard choices because until you've done it you cannot fathom what it is like.
I forgot to add...I do not consider not being able to care for an AD patient a character flaw. There is a reason for respite care, Assisted Living, Nursing Homes. These people need clinical full-time care that ONE person, even a family, simply cannot provide. There comes a time when it is TOO MUCH no matter what your best intentions may be. It is far better for someone to be placed and be safe than for the caregivers to be burned out because that doesn't help anyone. From the stages where they are up all night, the frequent psych med. changes, strange and/or violent behaviors, wandering, refusing to eat and bathe, it is a huge toll on your mental health. Happy New Year.
My husband is 63 with early late-stage Alzheimer's. We have been married for 8 years and have a 13 year old at home (my daugter whom he adopted). The last year to 18 months he has progressed rapidly. I know he is getting close to needing assited living (currently he has caregivers while I am at work--the other 17 hours, it's just me). What has been most surprising to me is the lack of concrete suggestions on the internet on how to tell him about the transition (or make the transiition). I have also searched for "how to know when it is time" and there isn't much there, either. The actual day of transition, when it comes, is what is bothering me most.
My mom has Alzheimers she has been living with me and my husband for 4 years and she is becoming so angry, stubborn, having temper tantrums like a 5 year old. And there is nothing we can do to calm her. She takes meds for her behavior but sometimes that doesn't work. She just wants to fight us on everything. My husband and I are truly exhausted and think it is time for a nursing home. I'm so scared to take the steps. All I can think about is how would I even get her there. She will not cooperate in any way and how long will it take her to get used to her new home or even yet will she?? I pray for the wisdom and strength to make the right decision.
Hello all, my name is Mike and it seems all you folks are living the same life as me. I am a fireman and I take care of my mom on my days off. Some days she is good but some days she is very sad, angry and inconsolable. I am getting burnt out and I have only had her in my home for 4 months. I had a professional come in and assess my mom and her situation. She told me I am at the time to get her into care facility. But the guilt tares my guts out. I thought I could do it, I would be able to care for mom, work and keep life normal. WRONG. I can do a lot of things in life and I can help people everyday at work, but this care of my mom.........I cannot do it. I felt so low and guilty when I came to that conclusion, but I did and now know she needs to be in a safe place with professionals who KNOW how to deal with dementia. It's hard to get your head around the decision to move mom, but it is best for her and the whole family. I will make the move, pray for her happiness and push the guilt aside.....I hope!
So glad I stumbled on this site. My mother is 86 with dementia. She has lived with me and my husband and kids for 15 years in a mother daughter setup. I have 3 brothers who do nothing, it is all on me. I am helping her bathe now and provide meals and laundry for years. She is having bathroom accidents but gives me a hard time using undergarments. She repeats alot, forgets what tooth paste is for and is a general fog. I can still talk to her, but I can't reason with her. I feel so guilty to put her in a memory care unit but we have no life. Can't just go out with the kids on a whim or go out with my husband unless one of the kids, 15 & 17 are at home. After reading this site I have decided to put her in a place. Her doctor said he would put her in the hospital and then have her transferred to the place since I don't have the guts to do it. Thank you for listening I feel for all of you. There are more kids taking care of their elderly parents than I even imagined.
I am 59 years old, and have recently been diagnosed with early onset dementia. My issues right now are limited to "mild" short term memory loss and some occasional confusion. I absolutely want my husband and daughter to "relocate" me when my decreased abilities negatively impact their life. I think most people would feel that way.
I care for my Mom who has Alzheimers . and have for 3years. Icared for her mom my grandmother before that and my dad before that. I am 55 and the mother of an 8 year old as well. I have lost all feelings towards my Mom I don't care about her feelings . I love her but don't like her. I resent my siblings because they can take spontaneous trips , go to the movies , go out to eat ... I can't .. This summer has started and I want alone time with my son . I want to go to the zoo go swimming.. But I can't . My siblings and myself have decided to put her in a care facility but we don't have the funds. She does not qualify for medicaid because she owns property . We started getting her house ready to sell so we could use that money for her care and it caught on fire and she had no insurance. So now not only do I have her to care for I have a burnt house to clean up and hope we can sell as is. The other property is in the middle of nowhere and who knows whenand if it will sell.
To the lady that thinks she can take care of your loved ones I thought that too. My mom was my best friend and we did everything together .. And now I just want her out of my home so I can have my life back.
Thanks for everyone's comments. I'm currently struggling with making the decision to place my mom in a Nursing Home. She's 78 and has Alzheimer's with dementia. I've cared for her, along with my sister, for four and half years; however, the last year has just been draining. My sister is no longer able to help care for her due to her own health issues and I'm the only caretaker. It's been difficult all along; however, now she consumes my every minute. She can no longer stand up on her own and requires help with everything. I have to get her up in the morning, take her to the bathroom, bathe and dress her, brush her teeth and help her eat. She doesn't remember my name and hasn't for a long time. I'm not sure if she knows I'm her daughter but at times I think she might. I think she knows the familiar, so if you're around her a lot she doesn't know who you are but that you're familiar. I do take her to day care two days a week and have a sitter come twice a week for a couple of hours so I can go to exercise. It's the only way I have any sanity left at all. I can't be out of her site for a minute or she is calling for me...not by my name, but by my sisters. For some reason, my sisters name is the only name she remembers at all. She can't self occupy any longer and "fusses and cusses" at the tv. She talks a lot but it doesn't make sense. Sometimes I want to say "can you please just be silent for five minutes". It's a struggle for me to get her to the bathroom as she gets agitated by the process. My back and wrist are killing me from the lifting and moving. At this point, I'm consumed with what the best thing to do is.
I know in reading all this it may seem obvious that I should place her...it makes sense to me as well. However, when I think about making that move, I'm riddled with guilt and sadness at what it would be like for her. I even went and visited three Nursing Homes to "take a look" and I saw so many in wheelchairs parked around a break room or nursing station slumped over with no interaction. While she can't do anything for herself, the thought of her being left in a chair with little to no interaction breaks my heart. She doesn't make sense but is still social in a nonfunctioning sort of way. :) She doesn't have the funds to be placed in a high end facility.
I'm thinking of speaking to a counselor to help me sort through all my thoughts and fears. I'm not sure it will help but at least I can have a neutral party hear my thoughts. There just doesn't seem to be any easy answers and I wonder how much longer I can keep doing this. I'm 57 and have no life. I used to take mom to listen to music and to exercise with my but now lots of people just causes her agitation and she'll keep saying...let's go, we need to go.
Hello Everyone, Thank you for participating in this conversation. Your support to each other is encouraging. There is no easy answer to the the caregiving challenges each of you are facing. Each situation is unique. I would like to offer you a few resources that may be helpful:
11 Signs It Might Be Time for Assisted Living | https://www.caring.com/articles/signs-its-time-for-assisted-living, 10 Signs It Might Be Time For Memory Care | https://www.caring.com/articles/whens-it-time-for-memory-care.
This article may be helpful in speaking to your loved one about moving: How to Have "The Talk" With Your Parents | https://www.caring.com/articles/difficult-conversations-with-seniors
Promises you can no longer keep and guilt when caring for a loved one is not uncommon. Here are a few resources to explore: Caregiver Confessions | When You Are Consumed With Guilt: https://www.caring.com/articles/caregiver-confessions-consumed-by-guilt, Secret Guilt of Caregivers | https://www.caring.com/blogs/caring-currents/caregiver-guilt.
For caregivers, taken care of themselves is not often a priority. However if you are not well, then you are not available to care for those you love. Caring.com has a Caregiver Wellness Solution that has valuable tips and resources: https://www.caring.com/caregiver-wellness. We have several online support groups in which our community members who share their experiences and support one another: https://www.caring.com/support-groups
Finally, if you decide to explore alternative care options for your loved ones, Caring.com is here to help. Caring.com has an online senior care provider directory located here: https://www.caring.com/local or if you would prefer to speak with someone on the telephone one of our Family Advisors would be happy to assist you. They can be reached at (800) 325-8591 7 days a week.
Please let us know how we can continue to support during this time.
I just put my mother who is 88 In amemory care facility. I was losing weight and my health. Both physical and mental, declined. I feel over the hump of getting her in the home. She went to day care so was already familiar with the facility type environment. She likes her room and the garden out her window. But she is definitely going through confusion and frustration. My brother says to leave her and let her get used to the staff. I want to spend the night with her each night to make sure she is not disturbed and has help if she gets overly wet. She would not eat dinner and was highly confused until I showed up. She ate and went to sleep. I do not regret putting her in. My health made it mandatory but I also see I could not do it all. You give up your life for theirs and I know that is not what my mother ever intended. The step to getting them there to the facility is emotionally the hardest. Step two is riding out the adjustment period. The question I battle with my brother is am I wrong to be showing up and even sleeping with her to help ease her into her new environment or am I hindering her adaption to the new caretakers?