How do we help, without affecting our loved one’s dignity?

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How do we help, without affecting our loved one’s dignity?

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I am sure some of you are caring for a loved one that used to be, still is and will always be very independent and who loves to exercise control. I am the daughter (only child) and the caregiver of a person like that, my mom.

She is declining and doesn’t have the ability to do half of what she used to do from a physical standpoint nor to handle basic things in life from an emotional standpoint. I am here, living with her to allow her to be in her house, to feel and be the lady of her house, but in order to help her while allowing her to be in her environment I have to run all errands as she cannot/does not want to go out, I give instructions to the helper we have because my mom is in bed most of the time; I give instructions to workers that come because she is not dealing with them, I help her solve any issues with her bank or credit cards -when she asks me to- because she cannot solve them.

Yet, my mom gets profoundly saddened and even offended, because she feels I am nullifying her, while I am from my heart only trying to help her. She cannot hear well what workers say (when she does deal with them) therefore she is not clear as to what she agreed to, when they finish their work and it is not what she wanted I’m the one blamed. I’m the one blamed for everything and I understand the underlying cause, I know her fight is not with me, it is with herself and it breaks my heart! I wish I could give her all my strength so she could be who she used to be and who she so desperately wants to be.

I am here with her to try to make her life a little easier and better, and so she doesn’t feel lonely and so she has someone that helps her to face the world with dignity, Yet I feel I’m not doing that at all, all the opposite my presence seems to mortify her...I cannot leave because she really is unable be by herself, and I would never do that. Plus she really doesn’t want me to leave, she would die from sadness if she was alone ( she used to live alone and that marked her deeply)

I recognize this is hurting me tremendously, I always have a knot in my stomach, always! Cannot sleep well, feel hopeless and powerless. I simply, honestly want to help my mom. I love her more than life itself, but it is so hard to be her daughter specially now. My mom is struggling with this stage of life more than she ever imagined and I never envisioned.

So, how do you help without hurting?

How do you support without our loved one feeling useless or as if we are intruding? I try my best to be kind and thoughtful but nothing seems to be enough.

How do you make your loved one feel loved, when you are taking on part of what they cannot do anymore?

How to love as your loved one needs to be loved at this stage of their life?

Struggling with patience and wisdom.

Family Caregiver Mental Health

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You put this under a mental health category. Answer if not overstepping. How has this affected your mental health?
As to your original question, I think that is a journey for all of us. No one size fits.

I was a lurker here for several years prior to,posting. I read some post about someone's bowel movement, which could not be expelled completely. That person, the caregiver, uh,helped, digitally.no can do. No. No.

Dignity and ALZ kinda go,by wayside, imo.

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My mental health, well that is a good question, I believe I am mentally exhausted for sure!
but I have the blessing of being able to maintain some joy in my heart most of my days, and I don’t take that blessing lightly because we all know in our caregiving journey joy is hard to keep in our hearts many times. My mom’s mental health is the one severely hurting, between deep depression and so many other conflicts, hence I positioned this question under mental health.
thank you!

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I'm so sorry you are hurting. You have helped me in times of distress in the past and I wish I could be of help to you. You are experiencing one of the painful realities of being a caregiver. We watch our loved ones declining - doing all we can to ease their suffering - and we often feel helpless and inadequate to be the person they need us to be. Simply put, we learn all we can and we do our best. THAT IS how we love them. God bless you. It's obvious you love your Mother dearly and there's no doubt in my mind that you will give her all she needs to make it through. One day at a time. 💙

PS Please take care of yourself. Get out and do something to make you happy. That knot in your stomach isn't good and you know it.

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You helped me Dlpandjep! Like you said, one day at a time. It is the only way. Thank you so much!

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Rosses,

First of all let me say that you have a heart of gold and your mother is very blessed to have you. Your mother needs a great deal of help and you have selflessly stepped in to take care of things. It is common for caregivers to forget about their own needs. You sound exhausted and overwhelmed. You mention that you have help but did not go into detail about what kind of help. It is sufficient? Would you benefit from having additional help to relieve some of the stress?

Are you planing to stay with your mother until the end of her life or are you making further arrangements for her outside of her home? Do you have any healthcare in your home, home health, hospice, etc?

I hope that you know you are doing everything that you possibly can and even though you feel that she is not trying to be hurtful to you by blaming you if something doesn't get done, it still hurts. Sometimes it is the pain talking, it is the disease or illness talking. They are not the people they once were and you are very understanding and compassionate to realize that.

Please take care of yourself. It isn't selfish to fulfill your own needs too. Can you or do you want to speak to your mom about certain issues? You spoke here with enormous love and respect. Is that possible to convey the same message to her? Would she understand?

Let us know how you are doing. We are here for you to ask questions or simply vent. Take care.

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Hi NeedHelpWithMom, thank you for your kind words. The helper we have now is basically for house chores, which is a great deal of help for me. My mom is physically independent, so having someone that is relieving me from the cleaning and helping me with the cooking, is a big deal and gives me back some personal time. My mom however has very high standards and none of the helpers seem appropriate to her; I think in a big part is because it is not her who is dealing with them, directing them (we have one, I say them because there have been several).
All is part of the control issue that made this question arise.

An yes, I am here to stay with my mom indefinitely. It is the best “solution” in our case, and trust me I feel blessed to be able to be doing what I am doing, I just hope I receive the wisdom to do and say what is right, at the right moment.

Thank you so much!

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I think you have wisdom since you have come here to question and ask for help. It is a real tightrope walking the line of helping your Mom and protecting their dignity. And that is stressful. Your heart is in the right place and the whole transition at this stage of life is a process. I think the dignity issue fades as you must take more and more control. Good on you for what you are doing for your mom! I think you will figure it out as you take this journey with your mom and the love you are showing is surely felt by her.

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You sound as though you are at the point of burnout....which is never a good thing....emotionally,physically, and mentally. Once your mom does pass you won’t have the strength to pick up the pieces and begin the next journey. Start taking care of yourself NOW. Rest assured your mom is very blessed to have you......but in order to move forward you must take care of yourself first. I know, easy to say....but mandatory.
I think we all wish to spend our last days with “dignity”, but sadly our physical and mental limitations sometimes dictate otherwise. For both your and mom’s sake it might be time to consider long term living arrangements. I know you feel this is against her wishes, but maintaining a home when health is declining can be extremely difficult and a burden. This would at least allow you to spend quality time with your beloved mother. So much pressure would be off and you could concentrate on what means most.....being with her without all the other distractions...allowing some dignity for both of you. And please, recognize your own limitations. Keep us posted. Best to you and mom.

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Thank you Abby, God bless!

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I am finding it difficult to understand from your post just how capable your mother is at present. ‘Half what she used to do’ could actually be quite a lot. If your mother is just struggling with what has already gone, one option that might be worth researching is to find a counsellor for her, rather than for you. She is the one who needs to adjust to herself, and to find a reasonable approach to you. Is there a professional you could bring in as ‘your friend’ to sit with her when you are out and talk about things? Has she ever talked to anyone besides you about her own issues? Incontinence, particularly bowel incontinence, is a problem for anyone’s dignity -it’s an occasional problem for me, and I do my level best to clean everything up without anyone knowing. Perhaps she feels like that about many losses. If she still has the ability to be ‘independent and to exercise control’, perhaps you should stop worrying about how you can do things better and see if she can be helped to do things better herself. Things are likely to get worse rather than better. Any improvement is worth thinking about now.

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Hi Margaret, my mom is intellectually alert, very smart, in the house she walks everywhere, does more than me sometimes, yet refuses to leave the house. Has trouble hearing, had a mastectomy some years ago and chemotherapy/radiotherapy deeply affected her body -now suffers from severe pain, stomach problems, teeth, bones, etc., all damaged as a result- and also impacted her mental state, as in trauma. She refuses any type of medical assistance. Hope this clarifies her current situation. And thank you.

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CONTINUE...Kind Heart, Kind words, Overlook many things...Your Presence is Supportive, God Got your back, love....

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Amen Parise : )

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You are not hurting your mother. You can do nothing about what is hurting your mother, and I can't put it better than Dylan Thomas did: she is raging 'against the dying of the light.'

That is okay. It is a valid response. She is frustrated, angered and saddened by the loss of her abilities.

One thing you can do is really accept her right to do this. You say you know her fight is not with you, it's with herself; but do you apply that "head" knowledge to how you feel when she is in mid-fight? There are tricks of the trade when it comes to this kind of detachment: do you use any psychological tools, do you mind if I ask?

You can also be alert to avoidable small irritations and discourtesies - such as people talking over her head about her business when she is right there in the room - and challenge them.

When it comes to carrying out tasks on your mother's behalf, I'd spend less time on being kind and thoughtful about it, more on being matter-of-fact. We all wish she was fine and didn't need help. Fact is, she does. There it is. So let's get the job done and not dwell on who's done it. Be careful that explanations and tiptoeing around don't rub it in that she can't manage, when what you want to do is to spare her pain.

This is *hard*. You love your mother, and what she's going through is hard for you to witness. You do know you're allowed to be unhappy about that, yes?

I do remember wondering from the beginning, and I still wonder, whether your being with your mother in this way was a good decision. But it's a bit late for that, and besides - there it is, and here we are. So. What are you doing to strengthen whatever supports you?

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Countrymouse, could you share some of those psychological tips that help me as the caregiver in dealing with the hurt when she attacks me verbally? I know in my head that it is not her, but it hurts me so badly.

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I have a similar scenario with my Dad. This video from Teepa Snow really helped give me understanding about the 5 things that make them feel like a person and some concrete example on doing it. I hope it helps a little. Your are doing a wonderful job and I'm sure if your mother was herself and could see your sacrificial love for her, she would be so proud of you.

https://www.youtube.com/watch?v=7Ek04qjT-xQ

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CarinDaughter, this is so true and exactly what my mom is lacking. Her days are empty which just deepens her depression. She is very intelligent and alert mentally, and despite her health problems (specially the constant pain in different areas of her body) she never backs up when it comes to cleaning or organizing, as long as despite the pain she is able to move. But her depression just ties her down and brings her down. The few times I get her to go out she comes back home in such a different mood! But she simply does not like to go out. So she writes -beautifully by the way- and communicates via fb with some relatives that live abroad, but other than that and the days when she feels like organizing and cleaning her days are empty. And I feel guilty about that because I think I should try to get her to do something, maybe something to do with writing for the church or anything that takes advantage of her intellect, but since she doesn’t go out we haven’t even gone to church in a long while. I wish I could find something that reminded her how useful and bright she is!

Thank you for sharin the Teepa video : )

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I understand your feelings, as I have been there also. Since you have no siblings to share this caregiving with you, may I suggest that you explore options for someone to help you take care of your mother? Someone that will understand senior caregiving issues and be a sounding board as you face many decisions ahead. You state that your mother is in bed much of the time.

If your mother has Medicare, it covers in-home hospice nursing and bathing assistance at 100% if your mother has enough medical issues. You can check the reviews of hospice agencies in your zip code on medicare.gov/hospicecompare. Agencies are very helpful on the phone and offer one free consultation visit if you want to explore this option. Many people think that they are only for care in final days, but they can re-certify patients every 6 months & I know of cases that have been covered for a couple of years. The hospice team consists of a physician, RN, social worker, aides, Chaplain-all trained on the needs of the elderly at this stage of life. They support the caregiver as well as the patient. Sometimes, the patient can absorb information from an objective medical person much better than from a family member.

Wishing you peace and support in this chapter of your life. Your mother may never be able to show appreciation for the care and love that you are offering to her, but you will know in your heart all the good that you have done.

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Being there, even if she seems upset by it, is how you show your love. I agree with going more matter of fact with her. That can be difficult for family members. My mom would lash out and be furious with me when I helped bathe or out her to bed. She wanted the control and would tell me she’s the mom and I’m the kid and that I better do as she said. I wouldn’t argue and let her ‘discipline’ me. However once we got nurses to help she was night and day: extremely cooperative and sweet as pie with them. We thought she wouldn’t want outside help and we were so wrong!

Also she was very mean to my dad but when he’d leave she would be incredibly concerned with him not being there, and worried about him being out by himself. She cared about and loved him even though she didn’t show it.

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This is so interesting. My mom didn’t want me to help her at first. She was too old to bathe alone and she needed help. I think it was embarrassing for her. She finally did let me help. She does still want to be ‘boss’ as you say. There is friction.

When she fell and had home health come in, it would depend on the aide they sent. One aide wasn’t a good fit, was on phone, left mom alone. I requested they didn’t send her anymore. The other aide did a great job.

Home health is over. I enjoyed the break of bathing her when I had it though. Mom has adjusted to me doing it for her. I think it’s hard to allow children to help in bathing at first. I get that.

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Have you considered being her payee when it comes to her bank account sometimes you just have to take control of certain situations that can be stressful for you to deal with one step at a time dont be afraid we all are doing the right thing and its human nature to feel bad ...But remember you are doing what your heart is telling you ...have a good day my friend...

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Don't jump in too soon to do what she can do for herself. Nurses and caregivers give this advice.

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I understand where you're coming from. There might be a few things your mom can do - or try asking her for her input on it... "Mom, what are your thoughts about ___" or "Mom what do you think about this..." "How would you like to see it done, Mom." If she has the ability she might like to at least think or know that she took part in whatever it might be.

A therapist told me that I was taking my mom's power (in a manner of speaking) away when I just outright did things. I thought it was making her feel better when in fact it was my way of trying to assuage my anxiety. Because my mom has more capability now, I just let her tell me what she can't do, and I have definitely sniffed out what can do but still asks me to do anyways. "Give it a try mom," is my new phrase. She doesn't necessarily like it but sometimes, what do you know, it gets done...

Above all else, you're doing your absolute best in a tough situation. I hope you surround yourself in that knowledge, you have nothing to feel guilty about or regret. Everything you are doing comes from a good place, even though the response you get may not appear that way. It is.

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Did your mother, in her infinite wisdom, assign you to be her POA or medical POA? Would she benefit from being in an AL or a NH? Have you sat her down and explained how your trying to help without hindering her independence? These are the things you need to be asking yourself. DO NOT take anything she fusses about personally: they're not aimed directly at you and you have to remember that to survive. Go see an Alzheimer's support group, they'll help you cope.

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I am so sorry you are going through this. My mom is not bedridden but I am the only one/daughter. And I continue to work full-time and brought her to my house almost 2 years ago, because I just knew I could not do this in my mom's house... my heart goes out to you. I will keep you in my prayers. And do find some time for yourself, get a calendar and use colors ( I use green because it's cheerful and my favorite) to highlight any kind of planned time to yourself... maybe a movie, maybe a concert, maybe time at a bookstore reading, maybe a walk in the park.... but mark your calendar to focus on something relaxing ... it will help.

And your mother knows somewhere inside all your love to help her is why you do what you do. Just be good to yourself, as well.

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Thank you Myownlife, I appreciate your words and even more your prayers, they are needed. The calendar is a great idea, I will put it in practice: )

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Tough question here. I was in your shoes when I had to live with my late mother because she demanded to live alone in her own home - mind you, many states and miles away from mine. My mother was both sight impaired, hearing impaired and incontinent and that last one was becoming both ways, though she didn't know it. When nothing else worked (because, after all, I "didn't know anything") I began reciting bible scripture. This worked! It calmed my dear mother to hear God's word. Best of luck and praying for you.

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I think if financially possible you need to back away. Get her 24/7 care or the level she needs. Imo AL is the way to go. They not only get care, they get socialization which has been proven to keep them happier and healthier. You are her daughter, not her nursemaid. Maybe she thinks staying in her home is best but is it? I think sometimes we get into this this thinking” she took care of me as a baby so I owe her” but that’s apples to oranges. You may not have the skill or stamina to care for an adult. A baby doesn’t intentionally control or exercise independence. I don’t know what relationship you had with her before,
but exercising control can be a nice way of saying manipulation.
My mother is very similar and rants at us but is charming to the AL staff. Sometimes you both need that distance. Her for the care she needs , you for the sanity.

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First and foremost get all the legal stuff done, P.O.A., Trust etc. Next, if she qualifies, or if she can afford it, get her full time care, or do the night time when she is sleeping and just hire daytime care. You will do better if you can be just her daughter and not her caregiver. She may accept personal care better if it is from someone in a nursing uniform. I was my Grandmothers care giver and now my mothers caregiver and I am going on 19 years of fulltime unpaid caregiving. Emotionally, financially, physically, and spiritually it is very taxing. I know I could not do what I do everyday for 24-7 without divine intervention. I hit my knees many times a day and I get answers. I also receive strength. If she has not been diagnosed with dementia she may be just having a hard time losing her independence. If she does have dementia, you need to educate yourself about it. Dementia is extremely hard to work with. There is help with caring for loved ones on this site and through a social worker. Always tell your mom you love her and explain what you are going to do and how you are going to do it.

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My situation is a little different. My only daughter / only child is trying / is taking total control in every aspect of my husband her dad’s decision making ( who has dementia ) She thinks I can’t do anything right. Forgot, she is a nurse. I respect her opinion, but I have no say in anything. I made her partial POA because she is smarter than me, but I’m not stupid and been taking care of her dad for years.
We don’t see eye to eye on anything. If I don’t do what she says there will be an argument and believe me I don’t do well arguing, I never win anyway. We use to be best friends. Now we are so far apart I don’t think our relationship has a chance to recover. I know you ask, why do I let her take control? I’ve always been a people pleaser. I felt if their happy I’m happy. I’m so far from happy
( stressed, anexity attacks, etc )

My advise, step back and give her the space she wants. Get her the help she needs to take care of her and keeping her safe. I wouldn’t want you to go through what I am. Be there as the loving daughter and let her know how much you love her and you will be both happy and continue having a loving daughter and Mother relationship.
God Bless you and I hope what ever you decide to do keeps an open and loving relationship with your mom

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Deb,

Isn’t it sad how caregiving changes the dynamics of a relationship? I care for my mom. My brothers do nothing to help. They always want to tell me what to do. I have tried to call you explain how things are since I am here day to day. I don’t care how smart your daughter is, and I am sure she is, not insulting your daughter in any way but you should be respected as the one who is there handling all of the day to day things. You have experience that she may not have, even if she is a nurse. Hugs!

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I had a very similar situation with my mother. After her heart attack and she does care for my disabled brother who is 67 years old, I moved in shortly to help her out with many things. I did all the cooking, doctors appointments, medication refills ,helped her with her bills that were confusing to her and assist ed with the care with my brother. And then as a couple of months went by I noticed that she was very unhappy. She wanted her life back she had moments of anger with me, I think more dementia setting in, and she wanted to do the thing she could do. As she regained her strength I had to step back and allow her to do what she could do and had to remembered to ask her about doing certain things within the home. I thought I was helping out by doing many things for her and I was when she was very weak but As she regained her strength, I had to step back. I had to move back out of the house and return to my job. We have set up online grocery ordering for her but I don’t think she knows how to use it so I will need to work that one out perhaps I will be ordering for her. I’ve touched base with her home health nurses to let them know I’ve stepped back and to let me know of any concerns . I go over every weekend to check on her. It’s very hard to see them struggle so when all we want to do is help.

I pray for you and all caregivers as this job is so hard, exhausting, heartbreaking and very challenging at times. Your mom is very fortunate to have such a loving daughter! ❤️❤️

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Oh Newgirl, it is the hardest thing I have done in my life, and the most concerning part is that it is truly unlikely that it will get better, on the opposite, because time just seems to take away more and more.

I will share something that I know for anyone that is not me -because I live it- may be funny. Yesterday I was asking my mom if she wanted a latte or just soy milk, I said it once, she looked at me as if I was speaking Chinese, meaning she didn’t hear me; so I said it again, still the look on her face was indicating she didn’t hear me, so I said it the third time louder...she heard me, but now the look on her face was of annoyance, being deeply hurt and mistreated by me, because by raising my voice I’m humiliating her, making her feel as if she is unable to hear (which is true, she cannot hear well, but I try not to make it obvious since she doesn’t want to wear an hearing aid). I swear my intention was FAR from making her feel bad, or showing her that I was “mad because she couldn’t hear me” as in being impatient. None of that from the bottom of my heart. All I was trying to do was to find out if she wanted a latte or just milk.

These days she finds everything I do or not do as me looking down on her because of her declining, she is consistently mad, sad and offended. It is so terribly hard to handle the situation because all I am hoping to do is all the opposite of what she thinks. Being mistreated by me is so not what is happening and it breaks my heart and yes, my patience, to see her hurting for something that is not happening.

She even said to me yesterday that she was never able to cry, however the other day she was crying, she said. And she meant she was crying because of how she feels she is being treated. That really breaks my heart but also frustrates me because I know I’m not living in a parallel world where I am not conscious of how I behave and how I treat her, I also know though that my physical and mental and even spiritual health are hurting because of this.

Such a hard journey, isn’t it? You had to step back, yet I don’t think I can do more stepping back than what I’m currently doing, yet that is also seen as an “I’m tired” behavior. For believers like me, the help from above is ALL that pushes us, and I constantly ask for enlightenment and guide through this, to know how to be the daughter my mom needs at his point in her life.

You likely have it harder than me because it is not only your mom, but your sibling who requires or will require your care too. May God bless you, and guide you as well!

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It’s so hard. No one understands unless they go through the caregiving experience. It gets terribly frustrating. It does take a toll on us.

It’s truly difficult. Yes, it is a burden, a huge weight on our shoulders but the last thing I want my mom to feel is being a burden to me. I know she feels this way at times. She even says that once in awhile and it breaks my heart.

I wish I had a good answer for you. All I can do is offer my support as another caregiver. I feel exactly as you do. It is extremely difficult to see our loved one deteriorating. They feel useless and we feel helpless.

Many, many hugs!!!

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Hello Rosses003, you really have it especially hard and it's unfair. I understand partly what you say because I'm caring for my mother who is showing a lot of signs of cognitive decline and I moved in with her and do a lot of things like you. She doesn't want to have tests (and didn't want earring aids either but I won on that one, saying she could try and discard them if not pleased) and of course regrets her independence, but perhaps not as harshly (yet) as your mother. What to say ? The fact is that if we agree to move in instead of relying on helpers, it is because we want the dear old ones to remain as long as possible in denial, at least partly. Doctors don't like this, it makes diagnostic difficult, but it is tremendously helpful in reducing depression, which is probably the worst to bear, both for our mothers and us. I bet you are doing a very good job if she can complain that you are overbearing or doing too much. If she had to fully grant you the thanks you deserve, it would mean admitting her helplessness. Your professionalism prevents this. The sad thing is : keeping her in a delusion is part of your gift. Yes, it feels terrible (a friend of my mother's charitably told me she couldn't understand why I was always there) but there is perhaps a tip : look at older people who don't have someone like you ! For instance, even if it's true, why did the old friend tell me such a thing ? Well... she has no one and would probably secretly enjoy discouraging me. Another old friend frankly cried out : why should your mother have someone and I remain alone ? (The same woman was offered a home at a child's but wanted of course to remain independent). So, look around you : old lonely people despair (but don't want people to intrude). A friend of mine, who took great care of her own mother (now deceased) is now pestered by the friends of said mother to have some help too. So try to cheer up : you are doing splendidly and everyone knows it, including, deep down, your mother, even if she doesn't admit it.

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Dear Rosses,
IMHO, I think it would be a good idea to “mirror” back what your mom says. Often, the elderly don’t feel heard or understood. When she makes comments, stop what you’re doing and ask her about it. Don’t interject. If she’s hesitating, then ask questions.
Mom; “I feel so useless.”
You; “Why do you feel that way?”
(Do NOT say “Oh NO you’re not!” You devalue her feelings by saying that.)
Mom; “Because I can’t do ......(a particular thing).”
You; “Yes, that must be frustrating.”
Mom; “I’ve done .......all my life and now I can’t. I feel helpless.”
You; “It must be hard to give up what you used to do and even harder to have someone else help. I know I’d have a hard time with that too.”
Mom; “It sure is!”
You; “Let’s focus on what you can do. You’re great at .......”
Mom; “Yes, I do that pretty well and these other things too.....”

In a perfect world, the conversation would go this way. If you can first acknowledge the problem, then sympathize with her, then redirect her to positive things, she may feel like she has been heard. Sometimes that’s all they need. It doesn’t hurt to find things she’s good at (crossword puzzles, cooking, sewing, etc.) and praise her when she completes them also. Lord knows how hard it is to decline and to watch your own limitations add up.

To lift her spirits, make sure she gets her hair done once in awhile or gets a new outfit here and there, fresh flowers for the table or something that would brighten her day.

Lastly, throw your guilt out the window. You are doing everything you can. I can “see” the love you have for your mother in your words. 🥰 Whether she can accept it, appreciate it or respond to it, she knows it too. Hopefully that and the strength of the Lord will see you through. (We’ll be here for you too!)

Tell yourself daily, “I’m doing the best I can. I can control and am responsible for MY emotions but I can’t control nor be responsible for the emotions of others.”

God bless you both.

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How do we help, without affecting our loved one’s dignity?

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