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Silver Conversationalist
Posts: 40
Registered: ‎07-14-2015

Re: Is anyone taking care of a spouse?

Message 1 of 249 (327 Views)
Hi a3427c Newbie! I'm so sorry to hear you have the total burden of caring for your wife, two teenagers, the house, a job, etc.! I care for my husband 24/7, as well as the house, finances, shopping, etc. So I understand your frustrations and the emotional drain! My husband has Lewy Body Dementia and became unable to speak last September. At that time he also lost his ability to walk, feed himself or sit up. I have a caregiver 7 days a week for 3 hours a day and three afternoons a week for 2 hours. At the most my husband is awake 6 hours a day. I have been caring for him for the past 3 and a half years! Caring for my husband wasn't as difficult till this last September but with his loss of body movement and becoming aphasic it is harder for me. I continue to talk to him hoping he understands me and wishing I could once again hear his voice! I'm so happy when he occasionally smiles I feel he knows who I am and we connect.
Caregiving is a very demanding, all consuming job when you love the person! I do hope you are getting some time for you. I hope you are also getting sometime with your teenagers. I'm sure they feel the lost of both their parents! You definitely need support, not just physically but emotionally and spiritually as well!
This is a great site to vent feelings, get support, share experiences, etc. You made a GREAT start reaching out!
Info Seeker
Posts: 4
Registered: ‎09-25-2015

Re: Is anyone taking care of a spouse?

Message 2 of 249 (380 Views)

Yes.Since 2011.  My wife has late stage FTD. Body is functional, brain is 2 year old with autism, no memory of life, family, or basic motor skills, eating, drinking. She is unable to follow instruction, her eyes work but brain does not interpret.
She is a shell that has to be hand fed. 2 people to toilet, walk, sit, stand. She is combative and can not communicate, But she has personality and we laugh often with her, when she is not wanderiing aimlessly, screaming and growling.

Our state has a great Medicaid program, one of the best, but I still have to fight, and win for adequate attendant hours. Family members are paid caregivers 80 hours per week. It is still not enough ,as she requires someone to be in her space for her safety 24/7 and she doesn't like to sleep. We have to toilet her every 2 hours even in sleep hours.
Our much berated Congress has legislated some great help for us in Medicaid.
I have had to fight the greed of the insurance companies who are contracted to provide Medicaid covered services. 

Info Seeker
Posts: 1
Registered: ‎02-08-2017

Re: Is anyone taking care of a spouse?

Message 3 of 249 (395 Views)

 I have been taking care of my wife for all most five years. She has eppilespy, 3 types of authritus, and a variety of ailments and surgeries, too many to list. 

Last year I finally received some help from social security by getting a caregiver 5 hours a day, 5 days a week. 

This has helped in the physical demands on me, but the pressure and drain of taking care of ALL of the household duties has been weighing me down and taking its toll on my health and psyche. We have 2 teenage children in our home and I am the only one that can drive, cook, clean, shop, on-&-on. 

That is just a brief explanation of my situation, anyone else in a similar situation? Please Reply if you are. I'm feeling more and more isolated lately.

Frequent Social Butterfly
Posts: 135
Registered: ‎05-04-2011

Re: Is anyone taking care of a spouse?

Message 4 of 249 (893 Views)

lb50258545 wrote:a
Again, Thank you for your understanding and insight! I'm sorry to hear you have the crud and hope you are feeling a bit better! The joys of winter and viruses! Hopefully it will get better and better very soon! Till later! Take Care!

I've been thinking on this. So much of people's behavior, including my own, has so little to do with the person they are talking to or ignoring or in this case subtly judging.  If family and friends are collectively wagging their fingers in a kind of "i told you so. i told you to be more careful... that caregiving is really too much in the end..."  or some variation, they may very well be projecting their own priorities and fears on your situation. It's not that they think so little of the two of you. It's that they don't even want to THINK about the tough choices they'll have to make in the future when, pretty much inevitably, they will be faced with their own declining health, or their spouses, or a parent, or god forbid a disabled child. 

 

do any of these friends ever say something like, "do let us know if there's anything we can do"?  if so, you can always take them up on it. Like, call one of them up, or even less intrusive, email or text. While you're on the mend, is there any way you could shovel our walk? or, i'm too tired to cook, any chance you could bring by a casserole?  I dunno, sometimes when you get very specific, people can help. you've taken away the struggle of thinking and offering.

 

or, if there's a friend or family member you particularly miss, see if you can schedule a time to see them, at a cafe, say. reach out. people might respond.

 

just a thought.

Jane

Silver Conversationalist
Posts: 40
Registered: ‎07-14-2015

Re: Is anyone taking care of a spouse?

Message 5 of 249 (942 Views)
Hi Jane, Thank you for your response! I so appreciate your support. I do feel my health issues are being blamed on my choosing to care for my husband. You hit the nail on the head! And it hurts. It hurts to think that family and friends think so little of me or my husband that they would blame either of us for our current life situation. I sometimes think they are jealous of my husband because I have focused my life and attention on him and not them. It's so sad because I would love to have them involved in our life, not to do anything but visit, have a meal with us, share a holiday, or just chat on the phone without freaking out if I'm hurt or having a bad a day. But that's life and it will change!
Again, Thank you for your understanding and insight! I'm sorry to hear you have the crud and hope you are feeling a bit better! The joys of winter and viruses! Hopefully it will get better and better very soon! Till later! Take Care!
Frequent Social Butterfly
Posts: 135
Registered: ‎05-04-2011

Re: Is anyone taking care of a spouse?

Message 6 of 249 (953 Views)

lb50258545 wrote:
Hi Jane! Thank you for your response it was so timely! Well Christmas and New Year's have come and gone and my husband is still here and most likely will be for awhile! I was beginning to feel better about life with the holidays over and then I hurt my leg getting out of the car, last Wednesday. I've been to my Primary physician, my chiropractor and my massage therapist. It is getting better but I find it disturbing when I'm told this has happened because my body is just stressed out from caring for my husband.
I suppose it's my fault for asking what happened? And when I'm told it's the stress of caregiving I feel so guilty because I must be doing something wrong that I can't care for him and me. I decided it's just too much constant stress and worry.
My massage therapist was the best, we sat and talked and she basically said if this is what you want to do then this is the right thing for you to do! And today she told to keep moving so my knee doesn't lock up. I left so much more empowered talking with her both days.
I know I can this for my husband. And I can learn to let go of the fear and stress that has been constant aspects in my life since he got worse.
I realize I do worry about him but I'm working on letting go of that as it has not done anything positive for me. This situation will change, I don't know when or how but it will happen.
Thank You for reading, Thank You for caring! I hope your New Year is going well! Till later!

I'm so sorry you hurt your leg! Sounds like you  have a team of people helping you. Funny (not funny) how people react to a caregiver like yourself. You DO choose this, and people get into a space where they blame you for your dedication, your hard work. I mean seriously? Blaming the victim. So common, so unhelpful. You choose it. You're doing it, you are taking care of yourself, juggling all of it. So i wish people around you would give you a break!

 

Please keep us in the loop as to how things are going. You are both inspiring and very smart about all of this. 

 

2017 would be great if i hadn't caught the crud that's going around. 3 days of flat on my back aches and pains, coughs, and faucet nose. Lovely. This too shall pass.

 

Thank you so much for the update! 

Jane

Silver Conversationalist
Posts: 40
Registered: ‎07-14-2015

Re: Is anyone taking care of a spouse?

Message 7 of 249 (984 Views)
Hi Jane! Thank you for your response it was so timely! Well Christmas and New Year's have come and gone and my husband is still here and most likely will be for awhile! I was beginning to feel better about life with the holidays over and then I hurt my leg getting out of the car, last Wednesday. I've been to my Primary physician, my chiropractor and my massage therapist. It is getting better but I find it disturbing when I'm told this has happened because my body is just stressed out from caring for my husband.
I suppose it's my fault for asking what happened? And when I'm told it's the stress of caregiving I feel so guilty because I must be doing something wrong that I can't care for him and me. I decided it's just too much constant stress and worry.
My massage therapist was the best, we sat and talked and she basically said if this is what you want to do then this is the right thing for you to do! And today she told to keep moving so my knee doesn't lock up. I left so much more empowered talking with her both days.
I know I can this for my husband. And I can learn to let go of the fear and stress that has been constant aspects in my life since he got worse.
I realize I do worry about him but I'm working on letting go of that as it has not done anything positive for me. This situation will change, I don't know when or how but it will happen.
Thank You for reading, Thank You for caring! I hope your New Year is going well! Till later!
Bronze Conversationalist
Posts: 29
Registered: ‎03-14-2013

Re: Is anyone taking care of a spouse?

Message 8 of 249 (1,135 Views)

I hope this is okay to post.

I write a post for stressed-out caregivers as many may have
1) overlooked these resources and solutions
2) may not be technologically knowledgeable about these available solutions
https://www.retirementincome.net/retirement-living/caregiving/

 

If this helps one person to relieve some stress or burden, then the post has value.

 

Larry Klein, Publisher
Retirement Income Blog

Frequent Social Butterfly
Posts: 135
Registered: ‎05-04-2011

Re: Is anyone taking care of a spouse?

Message 9 of 249 (1,262 Views)

..."But my feelings are more about feeling isolated and alone.  It's so hard now that my husband can't talk.  I'm constantly guessing what does he need?  And hoping I'm giving or doing what he needs!  And waiting for him to die.  No one wants to talk about it and we can't talk about it anymore. 

 

I'm trying to live one moment at a time.  I can deal with my husband and what he needs, but I don't have any left over energy to deal with the house or any issues involving the house.  I just can't do it all anymore.  Now if I could just let go of the feeling I NEED to do it ALL, I may make it.  One moment at a time.....

 

 

Hello there. And here it is Christmas Eve. Perhaps your last one with him. I don't think you need to place him at all. You have a good set up there, you get breaks, you care for him beautifully and gently from the sounds of it. You do need non judgmental presence in the form of friends or family who LISTEN and do not judge, who care for YOU as well as him. People ask about him as one way to guage how YOU are doing, but they could be more direct. It isn't easy to know what to say to someone like you, but all the same that is no excuse for being dismissive or callous. I think people are filled to the brim with their own problems and since they cannot solve YOUR problem(s), they snap out an answer. Get more help! Put him in a home!  Ah, no. What is so hard is that there is no easy answer. One day at a time one hour one minute at a time is the pace of caregiving, particularly in hospice when you are indeed waiting for the next decline, wondering if today will be the day, and then a week goes by, or another month.

 

Your isolation is worrisome for the long run, when he passes away. And that is tough. There's a new york times article about it that is important for everyone to read, i think: http://www.nytimes.com/2016/12/22/upshot/how-social-isolation-is-killing-us.html?mabReward=CTM&recp=...

 

I recently moved to a tiny town in a very rural area of Oregon. First thing i did was ingratiate myself to the librarian, who knows a great deal about the town and what goes on. She directed me to a bulletin board, which is in the post office of all places. I learned there's a volunteer group that meets monthly and plans fundraisers for this or that. They raise money for sports equipment for the local school since there are a lot of low income students. I joined the group. Then i checked out the local churches. There is no church in my denomination within 2 hours' drive so i joined one that i can walk to. It's worship style is not what i'm used to. but i have gotten to know more folks and i'm learning more names. 

 

i'm also online with the town's facebook page, where i've learned all kinds of things.

 

Where do you live? What interests do you have? Is there any hobby you have, like singing, or knitting, that might link you to others?  

 

Can you even think about this now? if not, wait.

 

But there are many readers of this caregiving community and writers full of wisdom. So please keep writing. Thank you for writing what you have. 

 

Jane

 

 

Silver Conversationalist
Posts: 40
Registered: ‎07-14-2015

Re: Is anyone taking care of a spouse?

Message 10 of 249 (1,293 Views)
Thank You c611836h for your response! I agree I continue to talk to him and love and share with him. There are times he tries to talk and I'm hoping I'm understanding what he is saying correctly. But either way, I'm here for him! I so glad your wife regained her speech! Till later! Take Care!