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Info Seeker
Posts: 1
Registered: ‎09-01-2017

Re: Tell us about the changes in your role

Message 1 of 12 (797 Views)

Over the 25 years my spouse has had Parkinson's disease my role continues to change. In the beginning, I was the researcher who studied the disease and generated treatment options and the patient listener as my spouse worked through how our lives had changed. Early on we worked through our bucket list and did it all--long distance hiking, cycling across the state of South Dakota, visiting National Parks, wine tasting from France to Napa. Today my role is largely physical caregiving, emotional support, and safety cop. Larry has developed Lewy Body dementia and sleeps most of the time. I've retired and taken up knitting and reading and continued cooking experiments for fun. We are surrounded by friends and live in the present 

moment.

Info Seeker
Posts: 1
Registered: ‎07-09-2016

Re: Tell us about the changes in your role

Message 2 of 12 (1,420 Views)

Hi Teri,

 

   I became my wife's caregiver back in 2015. She was diagnosed with ALS in May of 2015. That summer was spent entirely in the hospital from May through August, except two weeks. The ambulance was a regular site in our neighborhood! Then in October of that year, she suffered a terrible stroke which left her with daily migraines since that date! She also has scoliosis that was brought on by her ALS. It is so bad, that her ribs are resting on her hip, and the spine specialist said it won't get any worse, as it can't go any further! That in itself makes it terribly hard for her to breath.She has broken four ribs this year simply by walking across our living room floor! It is extremely hard for her to swallow, so I have to feed her nightly through her feeding tube. She still eats little bites throughout the day, but I could put in my hand what she does eat by mouth. It is bascially for pleasure.I retired from my outside job back in 2015 to devote my entire life to her needs! She does walk a little in the house with the help of a rollator, but that is extremely limited and short lived. Most of her day is spent in a motorized wheelchair. We don't get out much any more, as it is exhausting to her to go anywhere, and traveling into town eighteen miles away takes her a day or two to recover.We haven't been to any of our chidren's home in over two years, as they all have steps, and she can't climb steps since 2015! She is my hero! I could not put up with all the pain she goes through on a daily basis, and still be above ground! I thank God daily for His gift to me, and that she is not any worse than she is, even though I loose a little bit more of her everyday. I realize it will get worse, as there is no cure for this horrfic disease! That is why I cherish our time together and consider it an honor to serve her and take care of her! Perhaps this was the purpose I was put on this earth, was to take care of her. We have five children, three of which live within an hours drive of us, but they are all in the medical field and work constantly, so I do it all with the ocassional help from one of them, usually on a weekly basis if they have time, as they all have school age children. Of course I have my moments when I get discouraged or frustrated, but then I regret those feelings afterwards, and pray for forgiveness! My wife was extremely engergetic, outgoing, and loved to work outside, and still does, but is limited now. I made her five differnet flower beds, and a golf cart that she can drive around our yard and tend to her flowers whenever she wants to. But I have to say, I miss my wife terribly! We will celebrate our forty-eighth wedding anniversary this coming week, and I wouldn't trade one second of our time together for anything! I've known this woman for over fifty-two years now, and every night after I put he to bed, I come into my office, and get down on my hands and knees and let the tears flow as I talk to my Lord and Savior, Jesus Christ, and THAT is what keeps me sane, Teri! I don't undrstand why He gave me such a precious gift as my wife, and I glorify His name for giving her to me! I spent over twenty years in the military, and we traveled extensively around the world. It got so that my wife didn't unpack all the boxes, as we usually moved every six to nine months throughout my career. But she never complained about it at all! She got her degree in nursing and also her masters in elementary education! We are a GREAT team together, and I love her with all my heart! Perhaps when readers see this, I pray it gives them a sense of hope and encouragement. In todays world, we tend to think too much about ourselves instead of others. I'll close with this thought, Teri; No matter how bad we have it, someone else has it a lot worse than we do! Take care, God Bless, and may He keep us ALL safe and happy!

Frequent Social Butterfly
Posts: 262
Registered: ‎05-04-2011

Re: Tell us about the changes in your role

Message 3 of 12 (1,435 Views)

marshad349897 wrote:

Wow I thought you were talking about my mother, other then she is 95! She was about 93 when and she's  only been declining.  She loved her Ensure & bananas however, turns out she was drinking too much which would filled her up but it has too much potassium in it & put her blood levels critically high, which slows the heart rate down. Every night she wants chicken nuggets and sweet potatoes. We too have to force her to drink, we now monitor her liquids found lemonade in the Publix cooler and we take 1/2 gallon and dilute it with water. I went to the baby section and got 2 bottles with straws 12 ounces each for the most she drinks 1 1/2 bottles as long as the "aids" give it to her which is another chapter. Also she likes her jello which is basically  water. And again in the infant section at CVS they have electrolyte ice pops.

But it is a daily task too wants to fire the aids!

Good luck as this is truly a struggle, and seeing my mom always the life of the party to how she is today it's so hard!

 

 


The circle of life, Marsha. It's grand and puzzling and sometimes very sad. A friend of mine's mother insisted on lots of 'fluff' to eat, which was Readiwip Whipped Cream. It was squirted directly in her mouth, or put in a bowl with a spoon. Gave her no end of delight and pleasure. That's probably what i'll want, too, diabetes be damned. 

 

It sounds like you've been very creative in the food department! 

How do you take care of yourself?

Jane

Frequent Social Butterfly
Posts: 262
Registered: ‎05-04-2011

Re: Tell us about the changes in your role

Message 4 of 12 (1,439 Views)

claudiav679124 wrote:

I have moved from daughter to decision-maker for my 92-year-old mother.  Her decline has been rapid  both physically (wheelchair bound now) and mentally (loss of short-term memory).  She isn't capable of making responsible decisions except when she is.  That's the hard part -- trying to respect some agency while making sure she is protected.  I haven't enjoyed the need to become more firm, telling her that some things are not negotiable (when she tried to fire caregivers, for example), but then making sure that she still can decide things that don't matter that much.  

 

For one thing, she has a life-long dieting habit and regularly refuses to eat because she's always done that.  She also refuses to drink liquids much of the time -- she was never big on hydration and doesn't see why she should change now.  On the one hand, at 92 how I can say she was wrong?  But I also know her kidney function is declining and her electrolytes are low.  She has not indicated that she's trying to intentionally shorten her life.

 

Picking the battles is difficult!



claudiav679124 wrote:

I have moved from daughter to decision-maker for my 92-year-old mother.  Her decline has been rapid  both physically (wheelchair bound now) and mentally (loss of short-term memory).  She isn't capable of making responsible decisions except when she is.  That's the hard part -- trying to respect some agency while making sure she is protected.  I haven't enjoyed the need to become more firm, telling her that some things are not negotiable (when she tried to fire caregivers, for example), but then making sure that she still can decide things that don't matter that much.  

 

For one thing, she has a life-long dieting habit and regularly refuses to eat because she's always done that.  She also refuses to drink liquids much of the time -- she was never big on hydration and doesn't see why she should change now.  On the one hand, at 92 how I can say she was wrong?  But I also know her kidney function is declining and her electrolytes are low.  She has not indicated that she's trying to intentionally shorten her life.

 

Picking the battles is difficult!


Well said, Claudia. She can make decision except when she can't. She is fortunate indeed to have your kind and flexible guidance. Much like raising children, who don't know what can hurt them and what is okay to risk. 

 

I hope you can take care of yourself in all this, and i'm glad you have paid caregivers!

 

Jane

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Posts: 1
Registered: ‎10-28-2017

Re: Tell us about the changes in your role

Message 5 of 12 (1,662 Views)

Wow I thought you were talking about my mother, other then she is 95! She was about 93 when and she's  only been declining.  She loved her Ensure & bananas however, turns out she was drinking too much which would filled her up but it has too much potassium in it & put her blood levels critically high, which slows the heart rate down. Every night she wants chicken nuggets and sweet potatoes. We too have to force her to drink, we now monitor her liquids found lemonade in the Publix cooler and we take 1/2 gallon and dilute it with water. I went to the baby section and got 2 bottles with straws 12 ounces each for the most she drinks 1 1/2 bottles as long as the "aids" give it to her which is another chapter. Also she likes her jello which is basically  water. And again in the infant section at CVS they have electrolyte ice pops.

But it is a daily task too wants to fire the aids!

Good luck as this is truly a struggle, and seeing my mom always the life of the party to how she is today it's so hard!

 

 

Info Seeker
Posts: 4
Registered: ‎10-21-2017

Re: Tell us about the changes in your role

Message 6 of 12 (1,683 Views)

I have moved from daughter to decision-maker for my 92-year-old mother.  Her decline has been rapid  both physically (wheelchair bound now) and mentally (loss of short-term memory).  She isn't capable of making responsible decisions except when she is.  That's the hard part -- trying to respect some agency while making sure she is protected.  I haven't enjoyed the need to become more firm, telling her that some things are not negotiable (when she tried to fire caregivers, for example), but then making sure that she still can decide things that don't matter that much.  

 

For one thing, she has a life-long dieting habit and regularly refuses to eat because she's always done that.  She also refuses to drink liquids much of the time -- she was never big on hydration and doesn't see why she should change now.  On the one hand, at 92 how I can say she was wrong?  But I also know her kidney function is declining and her electrolytes are low.  She has not indicated that she's trying to intentionally shorten her life.

 

Picking the battles is difficult!

Valued Social Butterfly
Posts: 8,794
Registered: ‎08-18-2008

Re: Tell us about the changes in your role

[ Edited ]
Message 7 of 12 (2,107 Views)

@dh51476548

She's still on hospice after (3) years?

 

Boy,somebody really missed that call or perhaps it was you that encouraged her to keep on living.

 

Even with all her problems, does she indicate that she is happy/ content in some way with her quality of life?

Info Seeker
Posts: 1
Registered: ‎08-21-2015

Re: Tell us about the changes in your role

Message 8 of 12 (2,120 Views)

Hi

My Mother moved in from a nursing home on hospice, 3 years ago. She was given 3 weeks. I’ve worked extremely hard to help her thrive.. lost family support other than my Wonderful Son that helps 30 plus hours a week. She is manic depressive, biopolar disorder, schophenia. Stage IV Breast Cancer... mass in her lungs, still smoking. ( calms her down and well  at this point probably won’t kill her)

85 years old. I’ve had Nest Cameras installed as even from upstairs I can talk to her as needed.  Yes her Mental Health is harder to caregiver and gets me SAD. She is very challenging, demanding and strong even w all the hands on work colonspogy : diapers : personal care : breathing treatments. Bath : cook : clean etc. family has long dropped out of the picture, no desire or reason to visit .. I am very greatful for hospice team to check in and remind her how special she is. Being locked in an institution over Medicated living at home for this short time is not about me. ( she is not always thriving but getting the chance to experience a home again is awesome) keeps my heart from breaking with this short and challenging time I have with her. It did take 5 + years to get her out of old conservatorship. Thanks to Many Advocates and special people that hear me cry, call for help. I love all the Special People.

Conversationalist
Posts: 6
Registered: ‎11-14-2013

Re: Tell us about the changes in your role

Message 9 of 12 (2,168 Views)

I am a caregiver for my husband. I am a retired nurse and fortunately know how to navigate the medical system and understand the medical jargon, the insurance process, and know what questions to ask. My husband is able to shower, shave, ride in the car, but other than that he sits and I do everything else. The hardest part for me is that I know what is coming with his illness and I know that the time will come when I cannot leave him at home for even short periods of time. I grieve for what could have been-we are retired and fortunately have enough funds. We had planned to travel the US, go more often to visit our daughter who lives in England, visit old friends. Now I try to stay within an hour distance and am not gone over 2 hours. And then I worry about him. He forgets to keep his cell phone with him and when I call to check on him and he doesn't answer I get very worried.. My son lives close by and when I am absolutely needing my space, I call him and he will have his dad over to watch football or have dinner. I love my husband and want to be there for him, but it is very stressful. I feel so bad for those with absolutely no support and are suffering financially. God Bless the Caregivers.

Frequent Social Butterfly
Posts: 262
Registered: ‎05-04-2011

Re: Tell us about the changes in your role

Message 10 of 12 (2,338 Views)

mm42086099 wrote:

Hi Teri,

Most days I do feel as if I'm a nurse and not a wife. My husband was seriously ill for about a year after going through a 3 month battle with an infection and amputation.  He became dependent on me for his existence once he was home from the hospital and a short stay in a rehab (nursing home), where he hounded me while working as to why he could not be there.  Considering that I'm a working caregiver I find that I go to work to bring home the bacon per say and then there's this job waiting for me when I arrive home.  We do not have children together but he has four of his own (3 girls and 1 boy) all are of age (35-40's) and have a child or children. Of course I would not expect them to take on all of the work of caring for their father but it would be nice to have help. One daughter does not work and her children are all of school age same for his son. The other daughter works with a school aged child and has a couples days off during the week. The oldest works and has a grown son, they all seem to have time to do what the want to do to keep balance in their lives. None of them will commit to help in anyway, at any time unless it's a day that they need him financially.  Therefore I've become not only the Nurse but the following: Scheduler, Transporter, Housekeeper, Chef, Dietitian, Grocery Shopper, Bill Payer, Motivator, Therapist, Barber, Butler, Pharmacy this list goes on and on.

 

If one happens to find themselves in the position of a caregiver of their spouse, I hope that you are able to look to someone for additional help if not you are guaranteed to experience burnout. Be sure to except any help that is offered and if you can afford to pay of help do so.  This will allow for you to not feel as if you have lost yourself and any sense of normalcy to your quality of life.


Hey there, MM,

You have made a transition from wife to caregiver for your spouse. His children need to go from adult children who still milk their dad for money periodically, to caregiver of an aging parent who happens to be dad.

Would you agree??

I'm thinking, family meeting. He needs to call it. Gather all those adult children and have it with the assumption that everyone is going to take part, take on a task, or contribute money so that an aide can be hired. 

You are the 'step mother' which is not usually a position of great power. However, you married this guy for better and for worse AND his own progeny need to know how to be a caregiver, how to love him in the form he has now which is full of disability, and step up.

What do you think?  Would he back you up?

 

Jane