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Conversationalist
Posts: 5
Registered: ‎04-11-2017

Re: How do you support your parents?

Message 1 of 13 (438 Views)
Never lose sight of your own well being. You, too have a lot on your plate but through GOD all things are possible.It's hard to be with our loved ones 24/7 but during the times you are there seriously savor every moment. I have a lot of pictures and videos I sit, watch and cry saying if only I could hold you one more time, kiss you and tell you how much I love you. I know my Gorgeous Mom knows and she is with me daily. I can feel her presence. May GOD Bless you and keep you and all your loved ones wrapped tightly in HIS EVER LOVING, EVER HEALING, EVER POWERFUL AND PROTECTING ARMS and carry you through this journey.

Donna
Conversationalist
Posts: 5
Registered: ‎04-11-2017

Re: How do you support your parents?

Message 2 of 13 (440 Views)
I am so glad my words, my journey may help you. While I fully understand you're feeling guilty if you take off with your husband for a weekend, please do so, Your time is just as important as the time you give your parents. Take off and have some fun, relaxing time together. Maybe pick up a post card to take back and show your parents where you needed to go. Or maybe a little gift so they know you didn't forget about them. They have very short attention span with Alzheimer's/Dementia so a new novelty will brighten them right up. If they have a wheelchair or transport chair ride them around outside to show off their new 'toy.' There will be times when medication will be the only way to bring them out of their melt down and that is ok too. Many times when I had no clue what Mom was talking about I would simply ask her to tell me about it and sit for hours saying things like yeah, I remember while I am still clueless.

Google WHEN I GROW OLD. Print it out and frame it and put it where your parents are at. When you start feeling frustrated, read that letter. It will help bring things back into perspective for you. There is always support here on AARP and for that I am so grateful. I pray for each and everyone on here and their loved ones. Prayers are powerful and can move mountains. God Bless you.

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

Re: How do you support your parents?

Message 3 of 13 (455 Views)

Dear Donna,

As Melissa did, i want to thank you for your post. You are a devoted daughter: love shines through every word. And i am so glad your sister-in-law is helping. 

I'm hearing that you feel you must be 10000% devoted. And i worry that you are spending your own money. i strongly believe that our (crappy, inadequate to the Nth degree) long term care system must be completely redone, and meanwhile, that each generation must pay for it's own care. Why would you or anyone want to harm yourself financially to take care of your parents, when you will need money for yourself and your own care?  Your father sold the home, and it still didn't work out at that assisted living place. Does he have a financial planner or an attorney? What else can be brought to bear on his current and future care? I think it's worth finding out so that your own savings / income / assets are available for YOU.

 

Does that make any sense?

 

In any case, your mother sounds like she was a very special lady to inspire such adoration, and your dad is all the good qualities and then some that are exemplified by the Silent Generation: loyalty, stoicism, fortitude, fidelity.  You and your siblings have been blessed by their parenting of you. And you too have those qualities, which serve you as you serve them.

 

take care of yourself, okay?

Jane

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

Re: How do you support your parents?

Message 4 of 13 (457 Views)

Hi Melissa,

I am very glad you wrote about your experience. This statement made me very sad: 

 

"My life as I've known it for 53 years is over.  I struggle to look for a life ahead without my parents, perhaps alone without a husband as I myself get older. "

 

Why must it be over?

 

Your devotion to your parents is not at question. What i worry about is your neglect of yourself and your marriage. Of course you love your parents, and they need so much from you, and from other adult children if they have them (your siblings?)  Why must you sacrifice so much? There are alternatives. 

Especially do not sacrifice a chance to be with your husband, now that he has cancer, eh? right?

 

There are all kinds of services out there that could help your parents, and they should pay for them, like home meal deliveries (Meals on Wheels, which is subsidized and thus cheaper than just calling up a restaurant for take out.) Homemaker/house cleaning services. Home care aides who can bathe either parent if needed. 

I am so sorry you lost your "Aunt" Donna. Loss is an ongoing reality for each of us as we grow older. You are anticipating loss, of your parents, your husband. Anticipatory grief, it's called. 

 

You are a devoted and loving person. I don't want you to suffer, and sacrifice, needlessly. 

Perhaps a counselor could help support you? As you contemplate the future, as well as make sense of the 'right now'?

 

again, thank you for writing. I hope you will take my response to you in the spirit it is intended: take care of yourself.

 

Jane

Info Seeker
Posts: 2
Registered: ‎09-07-2017

Re: How do you support your parents?

Message 5 of 13 (474 Views)

Donna - First let me say "wow", and I am so thankful you took the time to reply. I am sorry on the loss of your beloved mother.  

I am at the beginning of this journey with both parents, in particular my mother has started down a very difficult road and has had a terrible week.  I struggle with figuring out what best I can do to bring their difficult status to the best outcomes.  I second guess myself all the time.  I pray to have the right answers.  Most of the time I just don't know.  I am pre-occupied with thoughts of next steps most of the time and have given up weekend trips and evenings out with my husband to do things for my parents.  The frustrating part is that what I do is only a temporary fix to a current issue.  Nothing I do is a long term solution because there sadly is no long term fix for them.  I feel anxiety and have sleepless nights wondering if/when the phone will ring with a new disaster.  I am heartbroken and sad and find myself crying at various points throughout the day.  On top of this, my husband has cancer.    

My life as I've known it for 53 years is over.  I struggle to look for a life ahead without my parents, perhaps alone without a husband as I myself get older. 

Thank you for your well offered advise on many tactics to help with this.  I will be heading your input. 

The last and most "magical" thing about your post is this ... My mom's lifelong best friend recently passed and mom has really struggled.  She was like an Aunt to me, and I've grieved her passing selflishly because I know she would know what to say to me to help my mother go down a road nobody wants to be on.  And what was her name?...  it was Donna.  Thank you.                 

Conversationalist
Posts: 5
Registered: ‎04-11-2017

Re: How do you support your parents?

Message 6 of 13 (487 Views)

Being a disabled senior I do the best I can in trying to make my Dad's life easier for him. We lost my Gorgeous Mother to Alzheimer's 8/23/16 and Dad has not been the same. Long story short, Mom would not go into assisted living without my Father. My parents moved into an assisted living facility (and please check them thoroughly as we thought we had) Dad told us to sell the house, furnishings, take what we wanted of course and Dad never looked back.

 

The facility they moved to told them that they had an Alzheimer's unit and when Mom was ready to move to that unit they could care for her there. Hind sight is ALWAYS 20/20. While there were some awesome employees there, the majority of the employees were there only for a pay check and nothing else. When the time came that Mom needed 24/7 skilled care the facility told Dad we had 2 weeks to find her another place. With my family already being in a very emotional state of mind, this shattered us completely. My parents were private pay (thus the reason for selling their home), and then to be booted out like this when we were told they could care for her once she needed the Alzheimer's unit, this is unforgivable. I was traveling an hour multiple times per week trying to lighten Dad's load even while in Assisted living. Even paying thousands of dollars monthly for their care (all they did for Dad was administer his meds, nothing else) this was still very costly. I live on a very tiny fixed disability income so I have gone without many of the things I need to help make my parents last stage of life more comfortable. I am not complaining by any means and please don't misinterpret what I am saying. I would lay down and die for either of my parents if that would bring them back to live a long and healthy life for themselves.

 

We quickly located a nice Alzheimer's facility for Mom to live out the rest of her life and Dad insisted in moving into a normal apt complex. (Dad will be 93 in December). Dad is a very stubborn man and at times very difficult to deal with. However, my brothers found him a nice apt community to move to (which was a lot less financially) and I got together the things he would need to live independently again. Dad (and I) are still grieving the loss of my Mother tremendously. I always try to be strong for Daddy but so many times I sit and cry for hours missing my Gorgeous Angel Mom.

 

Dad had to relent and allow us to help him when he moved into a regular apt complex. I still drive the hour drive up there and the hour back. For months I was doing his laundry and taking back to him, cleaning his apt and cooking for him. I would either do his shopping or take him where he needed to go, doctor, grocery shopping or just get out for a while. Again, I am not complaining. My sister-in-law is now doing his laundry which has taken a lot off of me and my brother is getting Dad to doctor appts and his shopping. I still do the bulk of his cooking (frozen dinners) is about all Dad can handle on his own and he is a tremendous fall risk. He has just recently been released from medical care from fractures in his spine AGAIN. I clean his apt and I do everything humanly possible that I can do for him with my limited physical ability and my very low income. I call him several times a day to remind him to take meds (Dad is still pretty much mentally in tact) so that is a plus.

 

In one of the few private conversations my Gorgeous Mother and I had while alone I promised her I would take care of Daddy and I am doing the best I can. Again, I am not complaining; not one bit but I will go without the things I need to do for my Dad because I know should Dad draw his last breath before I do, I will have no regrets. I have made these choices for what I can do to make Daddy's life easier and I would not have it any other way. Brought up as a Christian we learned that we do whatever we can to help others and God will take care of our needs. For anyone out there feeling they can't do anything due to their personal situations in life, please allow me to offer a few suggestions.

 

Pick up the phone and call and just chat. If you cannot understand what your loved one is saying just go along with their conversation (especially if they are Alzheimer's or Dementia). They just want to be heard and if you try and bring them back to the present because that confuses them more. Mom often told me she wanted her Daddy (he died in 1979). I told her he was about to get off work and would be there soon. That satisfied her and of course she forgot about it.

 

Send lots of cards either through the mail or in person. They love receiving mail and if they are bright and colorful they will hold them and look at them for hours. Especially if there are animals on them.

 

Open the blinds and let them people watch outside. If they are able to go outside get them out in the fresh air. This will also get them around other people. They need this interaction just as we do.

 

Many, if not all facilities will have Bingo. Take them to these functions even though they have no clue what is going on. Play their cards for them and hopefully win so they can get a little prize. Oh, how this brightens their day.

 

With Mom I took in 3 of my daughter's dolls that had been packed away for decades. When Mom would melt down because she couldn't get her words out and was frustrated I would grab the dolls and sing Playmate come out and play with me.....Sometimes it took longer than other times but we could bring her back from the melt downs in most cases.

 

On the really bad days Mom had and I felt the tears about to fall, I would 'go out and find the aide and get her some apple sauce, ice cream, etc just so Mom wouldn't see me cry.

 

Go to the dollar store and pick out a cute, soft stuffed animal. Mom would name them and would hold on to them a large part of her waking hours and always showing them to everyone that came in. It's the little things that make the biggest differences in their lives.

 

The most important thing to remember is even when your loved one cannot respond and they look very distant, THEY CAN STILL HEAR AND UNDERSTAND WHAT YOU ARE SAYING. THEY JUST CAN'T RESPOND!!! Please be careful what is said in front of them. I have a strong medical background and I thank GOD for that knowledge.

 

Remember that you are on very limited time with your loved one. Savor every single moment that you can. Make the most out of every moment you have with them. Take lots of pictures and videos. Trust me, you will be so thankful to have those memories captured to reflect back to.

 

These are the things I have found to be the best and most productive when caring for an elderly parent. I want NO sympathy for what I am about to say next. I am a senior disabled lady. I have disabilities in both legs (left leg will never bend again) and I have to hobble on the outside of the right foot which makes hobbling a little challenging at times, I also have a disability in my right wrist and I have some medical issues. Yes of course doing these things for my Mother and now my Father it does inflict high pain levels but that is a small price to pay to know I've made my parents life somewhat better. While I realize not everyone can push through their pain and that is ok. Don't beat yourself up. Send a card, make phone calls, take a stuffed animal to your loved one. It doesn't take a lot to cheer them up. And try hard not to be upset if your loved one does not remember you. With Alzheimer's/Dementia or just plain old age, this is bound to happen. Softly tell them who you are and ask if you can just sit and chat for a while. Hold their hand, caress their hands, arms etc to allow them to see you are there to love them.

 

Every case can be different so please those who have encountered these situations post what has worked for you. The battles you have won in calming your loved one down and the battles you have lost in trying. You will not win every battle but do the best you can. And please, please remember that if you are a full time caregiver, TAKE TIME FOR YOURSELF. If you  burn out you cannot be of benefit to your loved one. It's ok to walk away for a while and get yourself back where you need to be. Please don't feel guilty. It's extremely difficult caring for an aging parent so always allow time for yourselves.

 

To everyone who has traveled this journey, those traveling this journey now and to those who have not yet reached this journey, find an outlet that you can escape to for "me" time and prayerfully you will be able to balance everything out. My heart felt love and prayers are with each and every one of you.

 

Donna

Treasured Social Butterfly
Posts: 36,246
Registered: ‎02-27-2008

Re: How do you support your parents?

Message 7 of 13 (1,340 Views)

melissav837961 wrote:

My dear parents have been married over 50 years and doing well until about a year ago.  My mom started having various health issues and while not life threatening, it has impacted her quality of life.  My dad does 100% of the caregiving at home.  He is cooking, shopping, cleaning, doing laundry, lawn care, keeping track of doctor appts, and daily errands.  Until we can resolve the health issues my mom is battling, she is unfortunately mostly staying inside at home with the occasional trip outside to hair appointments.  I am happy she is able to keep up with that.  

My question to any adult child is how do you support your parents going through health issues that impact their quality of life?  I am open to input big and small.  Thanks.      


I would start with asking my dad what he could use a hand with.  Actually spending the time with him could be a gift to you both.

 

 

Life's a Journey, not a Destination" Aerosmith
Jen
Frequent Social Butterfly
Posts: 145
Registered: ‎11-20-2007

Re: How do you support your parents?

Message 8 of 13 (1,391 Views)

JaneCares wrote:

melissav837961 wrote:

My dear parents have been married over 50 years and doing well until about a year ago.  My mom started having various health issues and while not life threatening, it has impacted her quality of life.  My dad does 100% of the caregiving at home.  He is cooking, shopping, cleaning, doing laundry, lawn care, keeping track of doctor appts, and daily errands.  Until we can resolve the health issues my mom is battling, she is unfortunately mostly staying inside at home with the occasional trip outside to hair appointments.  I am happy she is able to keep up with that.  

My question to any adult child is how do you support your parents going through health issues that impact their quality of life?  I am open to input big and small.  Thanks.      


Hey Melissa, 

Great question, and you've gotten very helpful answers. I'll just add my 2 cents. That and $3.50 will get you a small latte. 

 

Conversations with your folks are crucial. What do they want? Big picture, long range, and up close and personal. Do you have siblings? Who do they trust? Does your father feel like he's burdened and burning out or is he feeling heroic and needed? Will your mother recover? If it's an open question, then you can keep talking as things evolve. Is their home wheelchair accessible and safe?  Are there grab bars in the bathroom? Do they want to do some renovating? Or have they always dreamed of retiring to the beach... the mountains...

 

Most folks don't know that there is a taxpayer funded agency for every locality in the US at www.eldercare.gov. If you put in your parents' zip code, you'll find it. Especially if they want to stay local, i'd go pick the brain of the longest serving social worker at that agency.

 

But before that, or alongside resource-exploration, the conversations are key.

 

AARP has a truly terrific resource called "Prepare to Care" which is well worth getting, it's free on the web site.

 

One more thing. I think it's really important to make sure that their care come out of their money. You need your money for you. If they don't have enough, and who has enough really, then an elder law attorney or financial planner can be helpful, and lay out options. Sobering stuff. But no one wants to be abandoned in a medicaid bed lying in their own urine. To put it bluntly.

 

So write some more, tell us more, what makes sense in your situation?

 

Jane


Jane mentioned Prepare to Care. Here is the LINK to download the free copy. 

 

Good luck to you and please write back and keep us posted. 

AARPJen
Caregiving Concierge
Frequent Social Butterfly
Posts: 262
Registered: ‎05-04-2011

Re: How do you support your parents?

Message 9 of 13 (1,480 Views)

melissav837961 wrote:

My dear parents have been married over 50 years and doing well until about a year ago.  My mom started having various health issues and while not life threatening, it has impacted her quality of life.  My dad does 100% of the caregiving at home.  He is cooking, shopping, cleaning, doing laundry, lawn care, keeping track of doctor appts, and daily errands.  Until we can resolve the health issues my mom is battling, she is unfortunately mostly staying inside at home with the occasional trip outside to hair appointments.  I am happy she is able to keep up with that.  

My question to any adult child is how do you support your parents going through health issues that impact their quality of life?  I am open to input big and small.  Thanks.      


Hey Melissa, 

Great question, and you've gotten very helpful answers. I'll just add my 2 cents. That and $3.50 will get you a small latte. 

 

Conversations with your folks are crucial. What do they want? Big picture, long range, and up close and personal. Do you have siblings? Who do they trust? Does your father feel like he's burdened and burning out or is he feeling heroic and needed? Will your mother recover? If it's an open question, then you can keep talking as things evolve. Is their home wheelchair accessible and safe?  Are there grab bars in the bathroom? Do they want to do some renovating? Or have they always dreamed of retiring to the beach... the mountains...

 

Most folks don't know that there is a taxpayer funded agency for every locality in the US at www.eldercare.gov. If you put in your parents' zip code, you'll find it. Especially if they want to stay local, i'd go pick the brain of the longest serving social worker at that agency.

 

But before that, or alongside resource-exploration, the conversations are key.

 

AARP has a truly terrific resource called "Prepare to Care" which is well worth getting, it's free on the web site.

 

One more thing. I think it's really important to make sure that their care come out of their money. You need your money for you. If they don't have enough, and who has enough really, then an elder law attorney or financial planner can be helpful, and lay out options. Sobering stuff. But no one wants to be abandoned in a medicaid bed lying in their own urine. To put it bluntly.

 

So write some more, tell us more, what makes sense in your situation?

 

Jane

Highlighted
Conversationalist
Posts: 5
Registered: ‎08-22-2017

Re: How do you support your parents?

Message 10 of 13 (1,641 Views)

I would recommend first ensuring (as also mentioned above) that you have handled all legal items on their behalf (since they are likely worried about day to day and not those items) and then also find out if all health care benefits are being maximized.

 

Some individuals may be eligible for non-skilled aid, supplies, etc. Also - look into convenience ways to help your Dad - Like grocery delivery, cleaning lady, etc. Check Angie's List and other similar sites for great deals on reputable providers!

 

Best of luck, good for you for doing right by your parents! 

 

J @ MSS