Sunday, February 6, 2011

I Need Your Advice

     One of the best things about having a blog is that it reaches so many different people all over the world. It is a great resource for information gathering. Today, I'm hopeful that some of you will be able to use your experience to help me.

     A few weeks ago I mentioned that my mother-in-law was diagnosed the week of Christmas with pancreatic cancer. She has been going through chemo over the past 4 weeks. The chemo hasn't made her sick, her hair isn't falling out and a recent scan shows the cancer is not spreading. This is all great news. However, she is exhausted, confused and not at all the person we knew just a few weeks ago. She has been the primary care person for my father-in-law who has suffered balance and memory problems since a car accident 3 years ago. He too seems to have rapidly gone downhill over the past 2 months. They have insisted on staying in their home and my sister-in-law arranged to have someone come in the mornings and two hours in the evening. This isn't working.

     I've been asked by my husband and sister-in-law to make calls tomorrow to find out options. The research I've done online, says that a nursing home costs about $5000 per person, per month. Assisted living with services might be a bit less, but not much. They are currently paying $18 per hour for the woman to come to the home. That would be around $3000 a week if they hired someone to stay around the clock. My in-laws are not wealthy, but they are also do have some assets such as their home.

     I really have no idea where to start this process. I don't know what questions to ask to make sure we pick the best place to "put them". I have read that unless a person spends 3 full days in the hospital and then goes to a nursing home, they are responsible for paying the full amount. I don't know what resources might be out there that could help with expenses. I think most people would find it difficult to pay $10,000 a month for care. Eventually we could sell their home, but something has to be done right away. We don't live where they do and my sister-in-law can't be with them all the time.

     This has all happened so quickly that they weren't prepared. The only thing I know about nursing homes is that the quality is very different. My mother's brief stay before her death was in a beautiful place, but we knew it was short-term, my dad is still mentally and physically competent to make decisions and their financial situation didn't limit my dad's choice of care. In the case of my in-laws, it may be long-term for at least one of them and they are neither one able to make decisions at this time. It is a mess to say the least and I don't even know what agencies to call to start asking questions.

     So, for those who have been through this with a loved one...what questions should I ask? Who should I call? How did your family member afford this? Is a reverse mortgage a good idea? One thing I'm learning very quickly is that long-term care insurance is a "must have" for my us to protect our kids. We will be looking into that for ourselves over the next 10 years. If you have any information that might be a help to me before I start making calls tomorrow...I would love to hear it. I've decided over the past year that aging is a bit more frightening than I realized. Thanks in advance for any help you can suggest.


Kim @ Savvy Southern Style said...

Sue, I haven't been through this yet and dread when I do. My husband said a reverse mortgage on the house might be a good idea for the needed money.

Bonnie@Creative Decorating said...

I understand Sue. This is so hard. My mom had no assets or money so she qualified for Medicaid. They keep all but $30 of her Social Security check for the nursing home. I had the worst time finding one that didn't have a waiting list for Medicaid patients so my choices were limited.

At the time, she was active and could take care of herself but her dementia was making her hard to handle. Now that she is having problems, I'm not happy with where she is at all.

If I had a choice, I would pay the money for home health care so they can stay in their surroundings. That is our plan for ourselves. We will be checking out the long term insurance as well.

The reverse mortgage is definitely something to check into. There are websites that I found with the state government to see the results of state inspections at the nursing homes. Find some that are rated the best and go there to spend A LOT of time.

Make sure they can be together in assisted living first if possible before they would be moved together to the skilled nursing part. It also needs to be close to family as you have to visit often. Things can change every couple of days. It has been one of the most overwhelming things to me that I can't control her environment because we don't have enough money.

My thoughts and prayers are with you and your family as you work through this. There is nothing worse than watching our loved ones slowly become someone we don't recognize. Hang in there and if you need to talk, you know where I am!

Pondside said...

My mother-in-law is in an assisted living facility that has the capacity for more intensive care along the line. She is 90. Right now she is in her own little apartment - one bedroom, with kitchen, living room and dining area, full bath and a balcony - but she takes all of her meals in a dining room. There's a library, games room etc so that it feels very much like a hotel, but with round the clock care staff. When she needs more care she will move to another wing of the same complex. Here's the website, and while I know that it, specifically won't be direct help, it's a good basis point

Flo @ Butterfly Quilting said...

We just went through this with my mom a couple of years ago. She was in hospital and could not return home alone. (she was 94) My sister and I spent days touring every possible place until we found one that seemed to fit. We sold her house, so she had money to pay for it. It was assisted living, similar to what "Pondside" has described, where meals and housekeeping was provided, but she still had her privacy. Unfortunately her health declined further and we had to move her again in 6 months.

It is very difficult! I am in Canada, so can't really comment on what is best in the US, though.

My thoughts are with you, good luck in your quest.

Marty@A Stroll Thru Life said...

All of the above suggestions are great ones. I volunteer here in Arizona to help some of these people. There is an agency called Hospice, people volunteer to come and take care of personal needs as well as prepare meals and administer medications. There is also the possibility of hiring someone to come and live in. I do know that most States have a list of services that you can call where you can find live in help for about $500 a week. This would be an option for now. Just a few thoughts. I am so sorry for all of your family. These are very difficult times. Hugs, Marty

Glenda/MidSouth said...

Sue, I don't have any advice. I wish I could be of help, but so far have not had to deal with a situation like this. Check with their Doctors and/or hospital and/or where she received her chemo treatment and see if they have lists of facilities, the services they offer, costs, etc.. Not sure, but don't most hospitals have a social worker on staff to help patients deal with things like that? Maybe they could provide you with information to get you started.

Marigene said...
This comment has been removed by the author.
Marigene said...

My heart goes out to the family. This is a very difficult situation of your in-laws as well as their family.

Call the Council On Aging in their area for some guidance on who to contact for care in the home or in assisted living.

Gypsy Heart said...

Sue, my heart goes out to all of you! My mother had physical problems due to osteoporosis...9 vertebrae in her back collapsed and there was a lot of pain plus she began falling. We did everything we could think of for her to stay in her room but it was taken out of our hands the second time she was hospitalized. The Dr said she just could not stay alone...even with people in & out checking on her. Fortunately, for us & for her, she had been Administrator of a nursing home and that's where she went. She had worked with so many of the nurses and the owner so they really pampered her. :-) She was given a private room and we were able to use some of her furniture in it. Now...when the TIA's began and more severe strokes followed, we were invited to participate in a "Compassionate Care" program at the hospital. It was fabulous! Drs, social worker, nurses, etc., met with us (no charge) and just laid out all the medical info and our choices.

I don't know if there is a program like this in your area or not or your m-i-l's area. Perhaps that would be a source of information?

It is absolutely prohibitive the cost of care for the elderly! IF you can find good home care workers, I would suggest having them remain in their home. Also, I have a good friend that does only reverse mortgages for her bank and that is definitely a wonderful option!

Your m-i-l's confusion is most likely due from age plus all the meds. F-i-l probably is upset and his problems are magnified. I do know that the Dr's told us that when the elderly are out of their usual atmosphere, they become very confused and disoriented. Breaks your heart!

I wish I had some definitive answers for you. I would call a local hospital and ask to speak with a social service rep. I think they could guide you to the right resource in the in-law's area.

Wishing you the best!

Country Wings in Phoenix said...

Good Morning Sue Sweetie...
I have to tell you we went through this with my in-laws and if we had it to do over again. MOST DEFINITELY we would go through a list that would help find someone to come into the home and stay with. We chose the nursing home route and I cannot begin to tell you the horrible nightmares we went through. We lived in the same city, but even so, it was HORRIBLE. It seems that being in their own home setting they have such few adjustments to make. Sue, truly if it can be done, find them a way to stay at home. Home is truly where the heart is.

I will be storming the heavens with prayers for your family to be guided in the direction you need to be. That God will open the book with the answers that you seek. My prayers are with you all sweet friend.

Many hugs and SO much love, Sherry

Unknown said...

I just heard from an expert on finances the other day that reverse mortgages are not smart moves, despite all the hoopla you hear about 'how great they are'.

My heart goes out to you all, prayers lifting. This is a sad situation to face & be in.

We kept our MIL in her own home as long as we could ...

Have a beautiful week.
TTFN ~ Marydon

Monica H said...

My grandmother-in-law was kept in a nursing home and it was very expensive. We sold her home and used some of those funds but it eventually ran out. I think she got some assistance from social security that helped but my MIL ended up working out a payment plan with the nursing home to lower her costs. She eventually came home and lived out the last of her days with my in-laws.

There is such thing as "Family Elder Care" in Texas that provides financial assistance to those in need- it helps pay bills, buy groceries, etc. through donation and state assistance (I believe). I would just do a google search for that in their area and see what you come up with.

Hugs to you,

Natasha in Oz said...

Sue, I so wish I could help you but I am assuming things will be different over here in Oz.Just follow your heart and be guided by the advice from your friends and family.

Best wishes and take care,

La said...

I wish I had some wise advice for you. I don't, but I do want to send you my best wishes for smooth journey through this new territory. I'll be thinking about you. La

Brenda said...

My heart goes out to you. Follow your heart and your instincts. I will keep you in my prayers. I know this is a difficult time for family. Thinking about you.

Patrice said...

I have not had to make this decision yet, either, but I will be getting long-term care insurance when I turn 60. Sounds like you have some good ideas above, so I hope things work out well. Does your husband have any counseling services where he works? That may be a good place to start...

Nellie's Cozy Place said...

Hi Sue,
We had this situation years back with my mother in law, she had a majorly debilatating stroke where she was paralyzed down her right side and could not talk, so we had no choice, and they told us to make sure we picked a facility with long term care, so I was just like you I had no clue.....but since I was the one with the time to do it as my hubby and sister in law were working, I just decided to go unannounced to each nursing home in the area and pay a little visit. I went in walked around like I was there to visit someone, no one stopped me or asked any questions. I went in noticed the cleanliness, if there were any bad smells, if the staff was engaged with the patients, and even asked a few patients how they liked it there. That was a great decision. The difference in facilities was amazing to say the least. One smelled horrible, all the doors to patient rooms were closed, all the staff were hanging out at the desk, I didn't see one staff member with a patient, and saw nobody I could ask a question to......the other one had no bad odors, many of the staff were engaged with the patients,
all the doors were open and the bed made and the rooms looked clean and tidy, and I was able to ask several ladies that were patients,
one lady used to go to our church and I didn't even know she was there, and she was a huge encouragement cause she had been there quite awhile and she said she highly recommended it,
she said sometimes you have to wait a little, she said but I really have to say I get great care, and the other one said, pretty much the same thing. It was a smaller not as upto date Nursing facility, but her caregivers were loving and kind and wonderful to her, and she loved them very much. I would look for a nursing home you like first, then go in and talk to their staff and they can tell you all the ends and outs of the financial end of it.
I would recommend that if possible you move them near you or near your sister in law, cause I went to the nursing home daily to check on my MIL, those that have people coming regularly usually get better care, I hate to say, but it is true!!
Hope this helps some!
Blessings, Nellie
Will be praying for the Lord to direct you,
these are very hard decisions I know!!

Shellbelle said...

After my mom suffered a stroke that left her paralyzed on one side and unable to speak, we had to put her in a nursing home. The place looked great, the staff was engaging and we thought we had made the right decision. She qualified for Medicaid, but they took her entire savings except for $5000 and her SS checks, except for a few dollars each month and her pension checks.

What appeared like the right decision, turned into a nightmare, too many details to put here. After I was hurt at work and became homebound, we brought mom home. This worked out great for us, but most people are unable to do this. Hospice was a HUGE help, but since you need round-the-clock care I would recommend checking into one of the in-home care places. I don't know how much it costs, but it would be a weekly or monthly rate, not the hourly rate you quoted, so the price might be more affordable. These are for caregivers and they do not provide medical care, just supervision, getting them to appointments, light housekeeping, meal preparation and such. Here's a website that explains more and has some articles you might find useful:

Also, there are many seniors who are fully capable, but are having a tough time in this economy, who might be more affordable. They would be getting room and board and a salary. You might check with the pastor of their church, he may know someone. Just be sure you do a background check and make sure that there is someone who can check on your in-laws well-being. Your local Hospice would be great for this, they are true angels, I don't know what I would have done without their help!

Good luck, I know this is extremely difficult.

Confessions of a Plate Addict said...

Oh my, Sue! I am so sorry! And this all sounds way too familiar for me. I had almost identical circumstances with my parents! We were able to get my dad into a nursing home after a stroke at a relatively reasonable cost only because of the three day hospital stay. I believe it was Medicare that pitched in plus his Veterans benfits and Social Security checks went to the nursing home as well. In the meantime, we had to also have my mom hospitalized for exhaustion and depresion from the round the clock care he had needed. And all of this took place over a two week period! My sister and I took turns visitng each of them as they had to be in facilities in opposite ends of the state because of the special care she needed. Having them together and near you would be so helpful! We were so fortunate to have a wonderful nursing home with a sweet and caring staff for my dad. They lived in a realatively small town and everyone knew the home by reputation. Other than that, I am afraid I can't be very helpful. Please keep us posted on how it goes. I am sending hugs and prayers your way while you go through this difficult time....Debbie

dee dee said...

I can totally understand where you are. I have watched my parents cover the care of both grandmas for the past 4+ years. After my grandma had her two large strokes, mom and dad moved her in with them full time. Mom has help, me and another care giver, come in during the week and take of her, however I've seen this burden of love totally wear out my sweet mom. Despite all, Mom and Dad wouldn't have it any other way.
I'll be praying that you will be able to find a place or a person (s) to help care fulltime for your inlaws. Aging in America is hard. I have found that life is not set up to help handle the need of the aging. Tax laws keep my mom doing hours and hours of paperwork, as she has to keep track of any money spent to care for my grandmas. The irony is, if my grandmas had not worked hard and saved money, the government would step in and take care of all their expenses.
In thoughts and prayers,
Dee Dee

J Rodney said...

Oh, Sue and your entire family must be heartbroken by having to make these decisions. I cannot really give you any advice, since we went through this in Denmark with my mom - in a country where care is mostly paid for.

We had home care for my mother, and it was great (although the turnover rate of employees was extremely high) to have my mother home. My dad was and is fully capable though, and I think this made a big difference, as he could keep track of everything.

I cannot imagine having a homecare team without someone from the family being able to check in very often. Since I became a part of the homeaide team, I have seen it from all sides, and if there is no one to keep check on everything, corners can easily be cut.

I wish you and your family all the best, and I hope you are able to find good quality care at an affordable cost.

The Quintessential Magpie said...

wish i could help, sue. sorry.

Kathleen said...

Hospitals usually have a social worker who lays out all the options.
We kept my mom at gome with round the clock nursing until the nurse said it was time. It was about 100 thous a year for the nursing home
here in NY. We sold her house and used the money to pay for it.
I hope you are able to find an experienced social worker who can give you all the info you need. Prayers for you, Sue. A very stressful time.

Angie said...

Best of luck, Sue. Keeping your family in my thoughts and prayers. I don't really have much advice to offer, but I'm sure you'll make the right decision.

me said...

It's tough, isn't it? Been through this with my dear father in law who passed away 5 years ago. I miss him so. We were really close.

It sounds like your in laws want to stay in their home. Is it possible to offer this option to them a bit longer? Maybe extend the help that is coming to their home? Can your sister-in-law or her spouse go over their home and commit a few hours a week? Can you or any other family member or friend take trips there and help? It takes everyone to help out so the burden doesn't fall on one person/family (like it did on myself and my husband - but we would do it all over again). It takes a family meeting, organization, a little sacrifice. Hang in there. Listen to your heart.

Kim @ Touch of Nostalgia said...

I'm so sorry Sue your having to go through this. Mom had been transferred to a rehab/nursing home after her stroke. It was paid for, for I 'think' it was going to be for the first 100 days in full since she had the 3 day hospital stay. Unfortunately she had her fatal stroke before any tough decisions had to be made. I know I received no bills (I was her executor)from them after her death so maybe it was so.

My heart goes out to you and your family. I know you will do the best for them as possible.

~ Kim