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Should I consider placing Mom in an Alzheimer's care unit to preserve my own health?

15 answers | Last updated: Sep 03, 2014
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Q
An anonymous caregiver asked...
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.
 

Answers
Caring.com User - Ken Robbins, M.D.
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Kenneth Robbins, M.D., is a senior medical editor of Caring.com. He is board certified in psychiatry and internal medicine, has a master's in public...
80% helpful
answered...

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 See also:
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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.

 

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79% helpful
Doco55 answered...

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

 

67% helpful
GALOWA answered...

Dearest Doco55,

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.

PERIOD.

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.

BE YOURSELF.

JUST BE.

THERE.

Wherever She NEEDS TO BE.

Warmest regards,

Galowa

p.s.

"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...

c.suzannemcable.2009

 

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D'ter & Sr. Move Mgr answered...

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.

 

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Befuddled1 answered...

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

 

100% helpful
Chris115 answered...

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.

 

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An anonymous caregiver answered...

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.

 

67% helpful
Corrine answered...

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.

 

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saravan answered...

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.

 

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An anonymous caregiver answered...

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!

 

magicx011 answered...

I do not agree with MANY of the comments/responses to the above plight this woman is facing. I currently am caring for my terminally ill mother and my 98 year grandmother with dementia. I grew up thinking my grandma would be placed in a nursing home. For years she told us that was where she would go if needed, as she never wanted to be a "burden" on her family. My grandma was in an assisted living until 8-12-12, when My mother and I chose to move her in with my mom. I am married and have 1 child left at home. I travel 18 miles each day to care for them, set up meals, do laundry and housekeeping, except for Sundays when I am working. I'm currently on part time FMLA with my employer until my mother passes away. My husband is currently making necessary changes to our home so that my grandma can move in with us. I went to my mother a few weeks ago to get her blessing on moving grandma with us. I understand the commitment I'm taking on, but she is my grandma, family. I think back to all the sacrifices my mom and grandma made for me and my siblings over the years. Our parents made the commitment to raise us, for a minimum of 18 YEARS! SHOULD OUR PARENTS EXPECT ANY LESS FROM US?? I think not. People can make choices for themselves and I have nothing against nursing homes, I have worked in them myself. However, I also have a strong commitment to MY WORD. Without our word being good...WHAT DO WE HAVE? So do what you want, Thank God my mom and my grandma have raised a woman that sticks it out and is good on her word.

 

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GALOWA answered...

Dear magicx011,

GOOD for you!

You have the optimism, the overconfidence, and the self-righteousness of a true newbie... You'll need all of that and much, much more. And I sincerely wish you nothing but the best in your efforts to "stick it out" and be "good on (sic) your word."

By the way, you make no mention as to the age of the one remaining child you and you husband still have at home...or to your financial situation, for that matter. Is your husband working still, or is he retired?

I also assume you'll want to provide the same quality care for your husband's parents and grandparents when the time comes... And of course, you're anticipating no medical needs of your own until the entire rest of your family has crossed over "The Rainbow Bridge..."

It's always a real eye-opener on this site (as well as refreshing and uplifting) to meet truly superior people like yourself: lacking any humility as well as any compassion for the struggles of other mere mortals who come to this site for support in their times of weakness.

By the way, please do check back and let us know if you still feel the same way - eight, nine, or ten YEARS from now...( assuming, of course, you even manage to make it that long...)

Yours, With the Sincere Bemusement Long-Term Experience Alone Can Provide,

As Ever,

Galowa

┬ęsuzannemcable.10/02/2012

 

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Rondacks answered...

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.

 

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Still caring for Mom answered...

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.

 

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billybrowneyes answered...

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.

 

 
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