1. < Caregivers

Caregiving: I’m frustrated and exhausted.

Posted by dem2301 @dem2301, Jun 18, 2019

My post tonight is nothing but venting and a bit of poor me. I'm caring for my husband with Parkinson's and Lewy body dementia. His daily care demands are exhausting some days besides taking care of our home, bills etc. and attempting to take care of myself which I'm not really doing very well. If I would have the listened to the nurse of 37 years(meaning me) I would have advised myself to go to the emergency room after being sob of breath and having chest pressure but no I needed to make supper, do meds, blood sugars, help him to the bathroom and be at his beck and call. I do feel better now but am so tired and I know he will call me at least twice tonight to help him. I know this sounds pretty mixed up but I just need to vent. Unless your living this no one really wants to listen. Including my own kids. It's impossible to even carry on friendships anymore, I'm unavailable when I'm invited which is becoming less frequent all the time
I don't leave him anymore unless it's to run a short errand. I had breast cancer and treatment last summer, I never skipped a beat. The day after surgery I resumed my daily care routine, drove 40 miles one way for radiation and still cared for him. I had carpal tunnel surgery in may, came home and took care of him. Like I said there is a bit of poor me involved tonight..i better quit for now. Thanks for letting me vent.

Interested in more discussions like this? Go to the Caregivers Support Group.

Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 17, 2019
In reply to @cindylb "Thanks for the hug! I responded on the other thread too (I've made a confusing situation..." + (show)
@cindylb

Thanks for the hug! I responded on the other thread too (I've made a confusing situation of that already, ha ha).
My husband is not in hospice. His cancer and overall health is quite unusual. We just returned from his oncology visit and even the doctors don't know what he has (what type of cancer) or what to expect. It's just an 'all gray area' for all of us. It makes it hard to plan and move forward or even know what the next steps should be. My husband is well enough most of the time to care for himself now but can't help around the house or with household or financial situations. That falls to me. I think my biggest regret so far is that I work all the time and don't have time to even really be with him. I feel that if I let one ball drop it will all go bad very quickly. I'm trying to get ahead of it a little so that should things get worse I will be able to manage to be with him.
We're in a weird spot where we don't have financial means we need but aren't poor enough for assistance. I'm not able to manage everything I need to do day to day but not in a position where getting 'help' seems plausible if I want to make sure I have it down the line.......another gray area.
Living in the gray area and going gray pretty quickly!!

Jump to this post

@cindylb, would you like me to move the message from the other related thread to this one, so your story is in one place?

I second @becsbuddy's suggestion of looking into the services that your local hospice may offer. They are not all for the end of life stage. See @debbraw's comment about hospice here: https://connect.mayoclinic.org/discussion/alzheimers-1/?pg=3#comment-309021

Let me know whether you'd like the other thread moved.

REPLY
1 reply
cindylb | @cindylb | Jul 17, 2019
In reply to @colleenyoung "@cindylb, would you like me to move the message from the other related thread to this..." + (show)
@colleenyoung

@cindylb, would you like me to move the message from the other related thread to this one, so your story is in one place?

I second @becsbuddy's suggestion of looking into the services that your local hospice may offer. They are not all for the end of life stage. See @debbraw's comment about hospice here: https://connect.mayoclinic.org/discussion/alzheimers-1/?pg=3#comment-309021

Let me know whether you'd like the other thread moved.

Jump to this post

Yes, I guess we should move it. Is that something I can do or.....? Thanks for the information on hospice as well. I'll check that out.

REPLY
Mentor
Becky, Volunteer Mentor | @becsbuddy | Jul 17, 2019
In reply to @cindylb "Hello, I'm new to this part of the support site. I am a breast cancer survivor..." + (show)
@cindylb

Hello,
I'm new to this part of the support site. I am a breast cancer survivor and share regularly on that topic. In addition, my husband was diagnosed about 18 months ago with a terminal 'cancer of unknown primary' (a cancer they can't identify by type). I still work and need to and also care for my husband and help with his 92 year old mother and my 82 year old mother. I am overwhelmed trying to manage all of that, still pay the bills, do the housekeeping, errands, and everything else. It's all on my shoulders and although I have had a great deal of stress and responsibility for many years.....now it seems I have to do 'everything'.
I guess I have two big worries with this. Of course I hate to see my husband suffering and I love my family but I have absolutely no free time and extreme stress working 2 part time jobs which don't provide quite enough income. We're not destitute (thankfully) but we're on the edge of losing all we've worked for all these years each day. I know that this time is precious with my husband and I really do try to stay positive but I'm so tired and I have to spend most of my time just trying to keep things moving along and our heads above water. Frankly, I get pretty cranky and resentful and try to keep it to myself but I'm sure it's obvious to everyone around me who knows me well. I also know from past caretaking experiences I've had (my sister, my Dad, a good friend) over the past 10 years, that I will regret and feel sad and remorseful about every angry and selfish thought I'm having.
I can't afford therapy nor can I afford the time it would take away from my duties and responsibilities. I also know I'm supposed to keep myself well so I can care for everyone I love......it's just easier to say, 'take a walk', 'get someone else to come in and help'......none of it seems actually do-able.
Thoughts, suggestions, fellow whiners?
Hugs..........

Jump to this post

@cindylb Hi, welcome to the caregivers discussion group. I had answered your post on another discussion thread and then saw this. And, I’m sorry I mentioned getting someone in to help. Not an original suggestion, but a true one, and now I’ve learned, not always a do-able one. I’ll give you a hug for that! Do you or your husband have siblings? Maybe they could help. Do your mother and MIL live with you? The whole situation must be so difficult—please whine all you want! Maybe some other members of this group have ideas. Hugs to you

REPLY
1 reply
cindylb | @cindylb | Jul 17, 2019
In reply to @becsbuddy "@cindylb Hi, welcome to the caregivers discussion group. I had answered your post on another discussion..." + (show)
@becsbuddy

@cindylb Hi, welcome to the caregivers discussion group. I had answered your post on another discussion thread and then saw this. And, I’m sorry I mentioned getting someone in to help. Not an original suggestion, but a true one, and now I’ve learned, not always a do-able one. I’ll give you a hug for that! Do you or your husband have siblings? Maybe they could help. Do your mother and MIL live with you? The whole situation must be so difficult—please whine all you want! Maybe some other members of this group have ideas. Hugs to you

Jump to this post

Thank you Becky. I think I am on two threads for caregivers. I'll figure it out, ha ha.
Our family and group of friends has unfortunately gotten quite small in the past 10 years. My sister died 9 years ago from Lung Cancer, my Dad died 6 years ago from cancer of the esophagus. That leaves me and one step sister for my Mom's care. My Mom lived 50 miles away (but an easy day drive) however she lives in the mountains in the house our family built and that's not the best situation any longer. I need to get her moved and don't mind doing that but I'm so busy trying not to drown in my day to day 'to do' list. My husband has a sister but she is in another state and can't help day to day. My MIL lives about 15 minutes away in a retirement community and is doing pretty well but recently had a mild stroke. At 92 years old, there will only be more support needed. My husband (even though sick) takes his Mom shopping and to do errands every week and we have her every Sunday for dinner. I handle all of the medical for them and my husband and myself. Again, I don't mind but the 'to do' list is pretty monsterous at this point.
We have good friends but have lost my husband's best friends one by one to various diseases and recently our closest friends moved out of state because they could both do better financially.
My husband and I are in our 60's so it seems like we're hitting this 'losing friends and family' pretty early.
We do have an incredible daughter who is 31 and whom we can count on at all times BUT, she has a full time job, a second part time job that is her passion and she runs a small business as well. I don't want to change her life at this point or burden her more than necessary. I want her to have a real opportunity to fulfill her dreams and have a great life. It's what I've devoted myself to since she was born and although I could call on her..........I don't want to get in the way of her progress in life at all. She is my rock though and the one I can really talk with about all of this. It doesn't hurt that she has an incredible sense of humor and is wise beyond her years.
We're kind of a ship adrift at sea and I'm the sad captain, ha ha.......
I have basically been a caretaker for 10 years straight now and also the major breadwinner and all around 'fix it' person for the family. I am running out of steam and beginning to lose my grip on all of this.
I'm sure there are others out there and I'm hopeful I'll get some new insight and support from this site. It's been invaluable to me as a breast cancer patient and survivor, so I'm glad I'm here and hope to share and get some perspective.
Hugs

REPLY
Mentor
Ginger, Volunteer Mentor | @gingerw | Jul 17, 2019
In reply to @cindylb "Hello, I'm new to this part of the support site. I am a breast cancer survivor..." + (show)
@cindylb

Hello,
I'm new to this part of the support site. I am a breast cancer survivor and share regularly on that topic. In addition, my husband was diagnosed about 18 months ago with a terminal 'cancer of unknown primary' (a cancer they can't identify by type). I still work and need to and also care for my husband and help with his 92 year old mother and my 82 year old mother. I am overwhelmed trying to manage all of that, still pay the bills, do the housekeeping, errands, and everything else. It's all on my shoulders and although I have had a great deal of stress and responsibility for many years.....now it seems I have to do 'everything'.
I guess I have two big worries with this. Of course I hate to see my husband suffering and I love my family but I have absolutely no free time and extreme stress working 2 part time jobs which don't provide quite enough income. We're not destitute (thankfully) but we're on the edge of losing all we've worked for all these years each day. I know that this time is precious with my husband and I really do try to stay positive but I'm so tired and I have to spend most of my time just trying to keep things moving along and our heads above water. Frankly, I get pretty cranky and resentful and try to keep it to myself but I'm sure it's obvious to everyone around me who knows me well. I also know from past caretaking experiences I've had (my sister, my Dad, a good friend) over the past 10 years, that I will regret and feel sad and remorseful about every angry and selfish thought I'm having.
I can't afford therapy nor can I afford the time it would take away from my duties and responsibilities. I also know I'm supposed to keep myself well so I can care for everyone I love......it's just easier to say, 'take a walk', 'get someone else to come in and help'......none of it seems actually do-able.
Thoughts, suggestions, fellow whiners?
Hugs..........

Jump to this post

@cindylb Not knowing the size of your community, is there a circle of people you can turn to? Perhaps a group from your faith community, or a wellness group nearby? Are there any senior resources to turn to, seeing your MIL is in a senior community? Even though your daughter has her own busy life, do you think she would feel upset if you Don't reach out to her? She might have some resources to consider, also. If you get too run down, you won't be any good to anyone!
Ginger

REPLY
1 reply
cindylb | @cindylb | Jul 17, 2019

Hello,
I'm new to this part of the support site. I am a breast cancer survivor and share regularly on that topic. In addition, my husband was diagnosed about 18 months ago with a terminal 'cancer of unknown primary' (a cancer they can't identify by type). I still work and need to and also care for my husband and help with his 92 year old mother and my 82 year old mother. I am overwhelmed trying to manage all of that, still pay the bills, do the housekeeping, errands, and everything else. It's all on my shoulders and although I have had a great deal of stress and responsibility for many years.....now it seems I have to do 'everything'.
I guess I have two big worries with this. Of course I hate to see my husband suffering and I love my family but I have absolutely no free time and extreme stress working 2 part time jobs which don't provide quite enough income. We're not destitute (thankfully) but we're on the edge of losing all we've worked for all these years each day. I know that this time is precious with my husband and I really do try to stay positive but I'm so tired and I have to spend most of my time just trying to keep things moving along and our heads above water. Frankly, I get pretty cranky and resentful and try to keep it to myself but I'm sure it's obvious to everyone around me who knows me well. I also know from past caretaking experiences I've had (my sister, my Dad, a good friend) over the past 10 years, that I will regret and feel sad and remorseful about every angry and selfish thought I'm having.
I can't afford therapy nor can I afford the time it would take away from my duties and responsibilities. I also know I'm supposed to keep myself well so I can care for everyone I love......it's just easier to say, 'take a walk', 'get someone else to come in and help'......none of it seems actually do-able.
Thoughts, suggestions, fellow whiners?
Hugs..........

REPLY
3 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 17, 2019
In reply to @cindylb "Hello, I'm new to this part of the support site. I am a breast cancer survivor..." + (show)
@cindylb

Hello,
I'm new to this part of the support site. I am a breast cancer survivor and share regularly on that topic. In addition, my husband was diagnosed about 18 months ago with a terminal 'cancer of unknown primary' (a cancer they can't identify by type). I still work and need to and also care for my husband and help with his 92 year old mother and my 82 year old mother. I am overwhelmed trying to manage all of that, still pay the bills, do the housekeeping, errands, and everything else. It's all on my shoulders and although I have had a great deal of stress and responsibility for many years.....now it seems I have to do 'everything'.
I guess I have two big worries with this. Of course I hate to see my husband suffering and I love my family but I have absolutely no free time and extreme stress working 2 part time jobs which don't provide quite enough income. We're not destitute (thankfully) but we're on the edge of losing all we've worked for all these years each day. I know that this time is precious with my husband and I really do try to stay positive but I'm so tired and I have to spend most of my time just trying to keep things moving along and our heads above water. Frankly, I get pretty cranky and resentful and try to keep it to myself but I'm sure it's obvious to everyone around me who knows me well. I also know from past caretaking experiences I've had (my sister, my Dad, a good friend) over the past 10 years, that I will regret and feel sad and remorseful about every angry and selfish thought I'm having.
I can't afford therapy nor can I afford the time it would take away from my duties and responsibilities. I also know I'm supposed to keep myself well so I can care for everyone I love......it's just easier to say, 'take a walk', 'get someone else to come in and help'......none of it seems actually do-able.
Thoughts, suggestions, fellow whiners?
Hugs..........

Jump to this post

Your message have been merged into this discussion, @cindylb.

REPLY
cindylb | @cindylb | Jul 18, 2019
In reply to @gingerw "@cindylb Not knowing the size of your community, is there a circle of people you can..." + (show)
@gingerw

@cindylb Not knowing the size of your community, is there a circle of people you can turn to? Perhaps a group from your faith community, or a wellness group nearby? Are there any senior resources to turn to, seeing your MIL is in a senior community? Even though your daughter has her own busy life, do you think she would feel upset if you Don't reach out to her? She might have some resources to consider, also. If you get too run down, you won't be any good to anyone!
Ginger

Jump to this post

Thank you for your support Ginger, I really appreciate it.
I am already 'run down', ha ha. That ship has sailed. When I had breast cancer I found great support from friends who also had breast cancer. My husband and I have great friends but day to day.....it's really on me to keep things moving forward. I have always been that person who can handle so much more than others and I guess now I'm concerned that I may have hit my limit. I'm looking into resources and getting great support here on the Mayo site, so that's a help.
Hugs

REPLY
2 replies
Mentor
Scott, Volunteer Mentor | @IndianaScott | Jul 18, 2019
In reply to @cindylb "Thank you for your support Ginger, I really appreciate it. I am already 'run down', ha..." + (show)
@cindylb

Thank you for your support Ginger, I really appreciate it.
I am already 'run down', ha ha. That ship has sailed. When I had breast cancer I found great support from friends who also had breast cancer. My husband and I have great friends but day to day.....it's really on me to keep things moving forward. I have always been that person who can handle so much more than others and I guess now I'm concerned that I may have hit my limit. I'm looking into resources and getting great support here on the Mayo site, so that's a help.
Hugs

Jump to this post

@cindylb Not sure if anyone has mentioned this before or not, but the Alzheimer's Association is actually the Alzheimer's and Related Diseases Association. Their state chapters are often very active and offer a variety of support on a more local level than the national organization, which is out of Chicago. The state chapters often offer a range of support and also can be a valuable reference resource for other offerings in their communities.

REPLY
kimspr3 | @kimspr3 | Jul 20, 2019
In reply to @IndianaScott "Hi @kimspr3 As a genealogist and our family historian I understand your concerns. I might make..." + (show)
@IndianaScott

Hi @kimspr3 As a genealogist and our family historian I understand your concerns. I might make a couple of suggestions for your consideration. There might be a local or county historical society interested in the family materials. Or maybe the branch of the military museum of your uncle.

Also, I know from my wife’s experience arrangements for medical body donation needs to be arranged in advance due to several scientific-based issues. Just a heads up in case it helps.

You mentioned your household goods. Maybe donate them to a charity via your will?

I am doing well and appreciate your kind wishes!

Jump to this post

Dear Scott, I can not thank you enough. I will take your advice and look into what you suggested. My Uncle Sam is my priority. I want to give him the dignity he deserves. WW11 in Germany, he was the gunner in a military plane when it was shot down. Have you ever thought of writing a book about your experience. I think it may help others.

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