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My name is Dolly and I am coming alongside my parents in a recent life transition. I have been helping with caring for my mother's needs in the past 8+ years (increasingly so over the past two months).  My mother has had Multiple Sclerosis since 1970.  She was recently discharged from a nursing home (3+ months) where she was staying to help provide respite for my father.  At this point Dad is also struggling with memory and hearing issues.  He is easily agitated, although I know he wishes that he could do more.  At this point he is not able to handle the physical care responsibilities for my mother. 

 

So, honeslty I am doing what I can to help both of my parents.  The last five weeks have been ESPECIALLY challenging because we fired a very abusive caregiver and the company that failed to arrive for 10 scheduled shifts.  Our transition to working with a new company has not been smooth.  I have been going to my parents' house and getting my Mom up and ready for the day then heading to work and returning to the house in the evening to get Mom ready for bed.  The extra time with my parents has been phenomenal, but my personal life has taken a SIGNIFICANT hit.  I don't have time or energy to spend with my boyfriend of 2.5 years.  I don't have a strong network of friends who are helping me through this either.

 

I sure do hope I can find some encouragement in this network.  I'm not really looking for suggestions, just a place to come and witness others as they navigate the challenges of serving people they love.  It can be very lonely to keep myself so busy and not take time to care for myself.  So, I'm praying for some direction here.  I've got to do something differently because my energy is depleted.  I've got a LOT to do in the next few weeks to catch up with graduate classes.  I'm pursuing a degree in social work and going to school full time (while attempting to bring a small income to pay for necessities).

 

Thank you for having me in this forum.  I look forward to being actively engaged and learning from each of your experiences.

 

With love,

Dolly

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Hello Dolly:

 

It sounds like things have been very challenging for you these past few months. I am sorry to hear that you mother has MS and your father is no longer up to the physical care that she needs. It really does sound like you need some good help. There is no excuse for abuse... It can be so heartbreaking to find out that your loved ones have been subjected to such cruelty yet it happens so often...

 

Your parents are blessed with you. I know how hard it can be on one's personal life - I hope your boyfriend is understanding. Sometimes it seems like something has to give and it always ends up to be one's own personal time. Try not to let that happen... 

 

You are an amazing person caring for your beloved parents, going to school and working on top of it. However, it is important not to get lost in the middle of it all. Just know that we are here for you.

 

Hugs, Glenda

 

 

 

 

 

Welcome Dolly,

 

Caring for two is one of the most difficult challenges... caring for someone with MS in progressed stages and someone with memory problems is one of the most incredibly difficult experiences. You have found a safe place to voice yourself, be heard and to be supported.

 

I hope that the new agency is able to assist more professional and to report on time, etc.

 

How is your boyfriend handling all of this? Is he able to support you emotionally? What about in your classes?

 

If you are located in or near a big city, just for your knowledge there an some wonderful volunteer programs that provide assistance for you and your parents.. new friends that they can converse with while you are working and in school.  Are there support groups for caregivers in your community?

 

We look forward to hearing from you.

 

Richest blessings in all you are doing... and lots of hugs and energy are being sent in your direction.

 

gail

Hi Dolly

 

Big welcome. I too looked after my mother with MS. It was difficult enough with just one parent depending on me... let alone two!

My mom also struggled on and off with depression and her own issues that invariably had me dragged into them.

Mom is in frailcare, has been since 2008, but its still hard, but in different ways.

Please let us know how you're dealing with all of it. I really hope your boyfriend understands and can support you - support that is worth its weight in gold.

Loads of hugs

Sk

Glenda ~  Thank you for the reminder about taking care of myself.  That has definitely fallen to the wayside.  I don't really know how to get my feet back under me in this department.  Suggestions are welcome )

 

Barb ~ Let me know how you manage this whole double caregiver role.  I was tickeld pink to have my mother and father in the same room this morning so we could all enjoy a cup of coffee together.  I find it important to spend some time with both of them just talking or relaxing vs. cleaning up soiled linens, et al.  We were able to talk about the current caregiver company issues and be respectful (for the most part) to one another.  Mom had to get some jabs in at Dad for his poor financial management.  I tried to squelch that conversation and bring some lightness to the topic.  I am assuming the guardianship over my mother's medical and financial matters (from my father) so I said we don't need to dwell on the past (that can't be changed).

 

Gail ~ Thank you for the suggestions to connect with others who are also caregiving.  I am still waiting for approval from the State to have the new caregiving company start.  We have gone just over five weeks without anyone coming to the house to assist us with daily ADLs.  It's been a challenging time.  I am going to look into volunteer programs that might come to visit Mom & Dad for an hour or so a week.  We used to have someone from church come every week, but she's only been to the house once since Mom was discharged from the nursing home. ( Sadly, my mother's home church has failed to be supportive in any form.  It makes me a bit bitter about religious groups ( I know I need to just get over it and find some people who simply care.

 

Sk ~  Mom has been in and out of nursing homes twice in the past two years.  Dad is just burnt out and doesn't know how to help her anymore (sadly).  He went to visit her nearly eveyr day when she was in the nursing home, too.  I sent you a private message about depression and Mom's dementia. I have found that challenging to cope with as she is non-responsive or melancholy.  I try to not take it personally (but sometimes that is rough).

 

Thank you all for your hugs and compassion ~  I feel valued and heard.  Thank you!

 

Have a blessed day!

 

Smyles & hugs,

Dolly

 

 

Hello Dolly (had to say that) , I think you will find this to be a very caring and supportive place to come to in time of need of some encouraging words and even cyber hugs! Take good care of "you" first, because the people who are depending on your help need to know you are well. I agree about having bf support...that can go a long way. Hugs!

 

Take care

Hi Dolly

 

I must say your mom is further along is rough road than mine... but yes the whole depression thing eats at you as well. Trying to help someone up physically and emotionally is the worst draining experience!

Your father has been a trooper for a long time, i can imagine how he is feeling at the moment, and the financial issues... well. its hard doing multiple roles as well as caregiving, all your mental energy goes into it.

My mother was the one who completely didn't care how fast she got through her pension because she reckoned I would be there forever to support her. That still gets me ticked off...

 

The non-support from religious group. Been there, done that. Unfortunately loads of people are very caring right in the beginning and then disappear a week later. No matter how finished you are and calling around for help you get nothing - and I mean nothing. I still got moaned at when they found out I had asked 'unknown black men' into my house to help my mother off the floor after she had fallen. In fact those men were friends of a friend who lived behind my house, so I did know them and in fact they were ONLY ones willing to come and help me. They came to help no matter what time it was, and it was usually late at night my mother had fallen and everyone else is safe and warm in their beds. the amazing thing was that some of those in that religious group lived right NEXT door to me but not ONCE did they come over even to just visit my mother for 5 minutes.

No matter how many times I said my mother is lonely and needs visits when I would see them they never came. A handful came maybe once or twice in the space of 8 years,   wow what support. I hold the individual people responsible, not the religious group in its entirety. That helps me anyway.

 

Just take each day as it comes...

Hugs

SK

 

 

Yah, Dad's been doing this for 30 years.  I'm confident he's building a mansion in the "sky" for all of his efforts.  He would do absolutely anything for his wife of 41 years (as of August 29th).  They fight like cats and dogs, but that's nothing new.  The newest part is my father forgetting what he's done with significant amounts of money and details about experiences we have recently shared.  He's losing his short term memory.  There are some other "infantile" behaviors, but they are not appropriate to post publicly.  It's been quite a learning curve with seeing how his functioning has been negatively affected over the past year, specifically.  It's noticeable from day to day (which is a tad overwhelming, to say the least).

 

Mom's physical health has significantly deteriorated in the past 15 or so years.  Her cognitive functioning certainly has taken a hit from time to time.  It is very challenging to communicate with her when her thoughts are scrambled.  She completely forgets certain things when she has been manic (or significantly records the events inaccurately). I am grateful that the current medications that she does take appear to be helping with diminishing such episodes (for the time being, at least). 

 

Caring for my parents is like helping defiant toddlers.  Every day is not so challenging, but I must admit there are more bad experiences and challenges than rainbows & butterflies.

 

Thank you for your posts.  I'm grateful you all are here.

 

I hope that I am able to come here and share some of my joys throughout this adventure.

 

Have a blessed day! 
Hugs,

Dolly

 

 

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