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Loosing independence
Danae
64 Posts
I know I have it easier than others and don't get me wrong I'm great full for that, but loosing independence is hard. Physically and mentally. Needing equipment to move around and help with daily activities, or going up and down without knowing if I my knees are going to give up and fall sucks. Also the brain fogs are terrible. I'm out in about 60 if I touch electronics. Then I need peace and quiet difficult in a 7 people house. Feeling the decline and not knowing if it is something temporary or will go away later don't make it better. My mom says that I over think about it, my wish is if I have to take care of me for daily things send me away but family want me home.
rant over.
12 Replies
Trillium
1227 Posts
Hello Danae‍ - it would be so hard to lose independence in any form but never knowing if a knee will give out and make you fall would be especially hard I would think.

You have done so well by being able to share your difficulties here. Rant all you want.

Do you have someone outside of your family that you can talk it out with too?

We are here for you!

Warm or cool hugs for you depending on your weather❣️🙃

Trillium
Brighty
6765 Posts
Danae‍ you are allowed to rant and feel what you need to feel. You have every right to your feelings.
​​​​​​I'm glad you you trusted us to confide. We will never judge you. You may find it helpful to chat with someone about what is happening. Perhaps a social worker. Someone who is impartial. I It's not easy by any means to lose ones independence. A 7 people house can be noisy..yes! How about noise cancelling headphones? Can you still find time to enjoy things or have a bit of quiet time for yourself? Do you have any hobbies? Feel free to continue to vent here. We are listening and we understand.
Boby1511
454 Posts
Danae
Hi there,
I too needed equipment for a while. It does suck. Embarrassing needing my mom to help wash me. (She's a healthy 70, I'm an unhealthy 47).(I have a type of soft tissue sarcoma).
I can't imagine your fog. Sounds horrible. My chemo fog was not as bad as some describe. I'd occasionally not be able to grasp a word or remember something. But it would pass.
Nice they want you at home. Hospices are loud, not a great place for peace and quiet either, and no air.
I plan to be home till the end.
Are you on treatment currently?
Sending you best wishes.
Danae
64 Posts
Trillium‍ hi, I have a volunteer that checks on me twice but not the privacy to talk. Last week I asked to be 1 hour by my self to make some other calls as well and everyone was in the room.
Danae
64 Posts
Boby1511‍ not only my mom but my husband as well. I worry about my mom because she has her own health issues and I can't help her. Thank God I don't have any pain. My immunotherapy is in hold until further notice. I have brain swelling as a delate reaction to radiation from last year. My oncologist changed the treatment to avastin to deal with it so I can get off dexamethasone. On the June the 1 I have my mri and we will go after that.
Trillium
1227 Posts
Danae‍ - No privacy even when asking would be very frustrating. Is it because they are worried you will fall? If so then a bell system of some kind may be helpful. Reassurance that you will just be sitting or laying and talking to friends and if you need to get up you will ring the bell 🛎 may help. Would that work?

Danae
64 Posts
Brighty‍ I tried to use headphones but still not being get over the privacy issue. My options are listed to kindergarten the half of the morning and not knowing when they listen to me including some gas release 😂 or the range hood and cooking. It can get interesting
Danae
64 Posts
Trillium‍ no we have all that in place. Safety is not an issue. Just regular daily life, but it gets frustrating because there is no place for privacy. Even if I go to the bathroom they will come to check. I understand that the worry but please I need some time to finish few things before I shut down! I appreciate the help and that my parents give but they can hide, and I worry about my dad because now he gets hit with the reality.
Trillium
1227 Posts
You need a she shed where you can go for some private “you” time. Have you considered talking to a counsellor. It would be really good for you to be able to talk to someone privately. Soon they will be opening the doors for some face to face talk sessions and your family won’t be able to go in to check on you.

All joking aside, talking to a professional is the next best thing to talking to us here. Your cancer clinic will have someone who specializes in cancer that will be able to access more supports for you emotionally.

They also can help you sort out the family so they can best support you too by giving you some quiet space and privacy. I’m sure your family will want to do whatever it takes to support you and will be better able to with specific instructions on “how to” from a counsellor. The counsellor can also help your dad to adapt to the reality of your situation.

You know what’s best for you and your family but I have always sent my family members to counsellors and myself as well.

It’s great that this community of many people are here for you too and you can talk to us about anything. It is such a pleasure getting to know you.

Hugs if you need some.
Trillium

Hi @Danae

I am sorry for what you are going through. Although it is not the same, I have metastasis to both eyes (from lung cancer) which makes for a blurry vision in my left eye. Had radiation in both eyes as my vision in my right eye started to diminish rapidly. It has come back almost perfectly. In a matter of days, I had to stop working and driving - talk about loss of independence, especially driving to run errands or go to my appointments. I also habe brain mets, which is not a great combo for driving either! 😂 What helped me so far is to be grateful for what I have, stay hopeful and listening to music and short meditation when I feel like it. Anyway, just wanted to reach out - this is a wonderful community.

Catherine

Birdwoman
99 Posts
Hi Dauntless‍ thank you for responding. I have moved our discussion to 'Losing Independence' as it might help others and will be easier to find.
You wrote----------------------------------------------------------
Just read your post. So happy that my opinion on being able to live alone in my little apartment struck a note with you.
I think that a lot of us that do not have direct caregivers have a fear of losing our independence , having to move, being a burden to family members.
I did find it hard watching another person cleaning, cooking and puttering around my place. In the beginning I had her do the bedroom first and I went in and lay down while she did anything else, and prepared my meal.
Now we chat, and I am getting used to her being around. It is only two hours three times a week. I also now know that if I need her more often, it will be alright and will enable me to stay at home with my 15 year old cat Dijon a lot longer.
My two sons and friends are more relaxed about it all . I still putter about my place and do it at my own pace. Sometimes I go to store for a couple items but have large grocery orders delivered or my son picks it up when he can.
I feel more independent, productive, and overall confidant.
All the best to you, and feel free to stay in touch with me, us gals have to stick together.
Dauntless, (Dianne)
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I too find it hard to have another person in my one bedroom condo while she cleans, but I also stay in a different room and then we change. Over time, she has learned how I like things and we get along pretty well. From what you wrote, I am assuming your helper is a type of Personal Support Worker who can look at your meds and provide other assistance. That might be in my future, but for now, I am managing. I understand that you feel independent, productive and confident. That is wonderful. Me too! My parents lived to 97 and 84 so I learned a lot from them about old age and know what I want to avoid! However, they were lucky not to get cancer at 67 like me. But I draw a lot from their strength and wisdom.
I did have equipment to deal with after my hip replacement in Sept 2019, and thought I would be walking my usual kilometers again. But my back keeps getting worse, it's collapsing slowly in the last 4 vertebrae, so I am trying to prepare myself. That is why I am so grateful for your courage and ideas on how to move ahead. I am thinking of you and wishing you a great week and sending love and a big hug!
CentralAB
1007 Posts
Hello Danae‍ And welcome to CCC. I thought Id reply for a minute to try and give you a tip or two that might help. When I was a caregiver for my wife (over a 5 year period) she had very similar thoughts, feelings, experiences re losing independence. One of the things that I learned about that was that if we could talk about this before she lost all or most of her independence and then when she was less able or not able to express what her thoughts/needs were, I was often able to anticipate those, based on our past discussions. For example, in this topic, Make Every Day Special I came up with quite a few ideas that really made our difficult road a lot smoother. Dont be scared to tell your loved ones/caregivers things that would be meaningful/helpful to you as you go through this very trying dilemna. Rants are always welcome here.
Danae:
I know I have it easier than others and don't get me wrong I'm great full for that, but loosing independence is hard. Physically and mentally. Needing equipment to move around and help with daily activities, or going up and down without knowing if I my knees are going to give up and fall sucks. Also the brain fogs are terrible. I'm out in about 60 if I touch electronics. Then I need peace and quiet difficult in a 7 people house. Feeling the decline and not knowing if it is something temporary or will go away later don't make it better. My mom says that I over think about it, my wish is if I have to take care of me for daily things send me away but family want me home.
rant over.

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