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 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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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'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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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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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 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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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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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.

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

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