The facility where my mom is has quarterly meetings. I admit that I did not attend them at first because, well, really no excuse, I just didn't. Anyway I started going to them when my mom started getting really bad and had been sent out to rehab two times for hitting other residents. The meetings before hospice consisted of me and the nursing home social worker. After hospice, the meetings consisted of me, the nursing home social worker, the nursing home unit (lead) nurse, the hospice social worker, a hospice nurse, hospice volunteer and sometimes the hospice chaplain. They go over her meds by reading all of them off and why she is on them. They talk about her overall health, her decline and ask if there is anything else they can do for her and if I need anything.
Today's meeting (9/24/14) was at 1:30. I got to nursing home at 1 and went to visit mom first. For some reason these meetings make me emotional. I started crying when I saw my mom and then the hospice social worker came in with one of the new nurses to check on my mom before the meeting. The social worker knew I had been crying so she gave me a hug.
We went to the meeting and went over all of the normal things and once again I cried saying that I wished she would have a heart attack, a stroke or something because I hate seeing her this way. They assured me this was normal. I asked why 4 people on her floor were walking around being way more active than my mom one day and then all of the sudden they are dead. Why someone who is bedridden is still alive and suffering. I wanted answers, I wanted relief for my mom, I wanted it to all end. In the meeting the hospice social worker asked me how often I visit my mom (she knew, but just wanted me to share with everyone else I think). I told her I try to come every other day and she asked "have you ever thought about giving yourself a break?" "NO". I want those who read this to know that I don't have a real job, so I am very thankful that I can spend a lot of time with my mom and I am richly blessed with family and friends who visit my mom when I am out of town, as was the case of the previous weekend when I was in Colorado.
The meeting lasted about 30 minutes, so afterwards I went back up to see my mom. I cried more and couldn't even contain myself long enough to leave. I crawled in bed with her and watched Ellen. When I am sad I like to watch Ellen, ha even when I'm not sad. I finally left after Ellen. I was ok to leave but cried a little more with my face to her face. Told her I loved her and left.
Wednesday, September 24, 2014
Scrapbook
I remember reading one time that when you scrapbook, if you have a lot of old pictures you should start with the most current pictures because the memories are fresh in your mind. I'm not sure why I remember reading this because it's been a long while since I have scrapbooked. Having said that, I am going to post current things about my mom and work my way back or do both.
I will start with Monday, Sept 22nd 2014 as this was her 77th birthday.
As I walk into her room I have in hand three different desserts from one of her favorite cafeteria's. A chocolate meringue pie, custard and a white cake with chocolate icing. Coincidentally, I like these desserts too. Now, knowing that my mom can only eat pureed or soft foods, the pie and custard were going to be easy to feed her. I had to mix the cake in milk, but I actually mixed it with the custard and pie too. I split all of the desserts in half and shared it with the staff because my mom would not have been able to eat it all.
My mom looks so different from her birthday last year, almost a shell of herself. It makes me tremendously sad to see her this way. She has not focused on me or anything in a long time. She just has a blank stare or her eyes are closed. The picture on the top right was from last year and bottom left is from this year. What a change, so please take this as a warning that this is what will happen with your loved one as the disease progresses.
I also have a card for her. Not sure why we do this. Why we feel the need to buy gifts or get cards for someone who doesn't even know they are there. I think we do this more to make ourselves feel better.
The nursing home has put a sign on her door that reads "Happy Birthday" and they brought some balloons. I was glad they did that because balloons are just a happy thing, always associated with happy occasions.
Mom ate her desserts well and even ate most of her lunch afterwards. Yes I fed her desserts before lunch. lol
Mom is getting worse, there is no cure for this disease and it is evident why it's called the longest goodbye.
I will start with Monday, Sept 22nd 2014 as this was her 77th birthday.
As I walk into her room I have in hand three different desserts from one of her favorite cafeteria's. A chocolate meringue pie, custard and a white cake with chocolate icing. Coincidentally, I like these desserts too. Now, knowing that my mom can only eat pureed or soft foods, the pie and custard were going to be easy to feed her. I had to mix the cake in milk, but I actually mixed it with the custard and pie too. I split all of the desserts in half and shared it with the staff because my mom would not have been able to eat it all.
My mom looks so different from her birthday last year, almost a shell of herself. It makes me tremendously sad to see her this way. She has not focused on me or anything in a long time. She just has a blank stare or her eyes are closed. The picture on the top right was from last year and bottom left is from this year. What a change, so please take this as a warning that this is what will happen with your loved one as the disease progresses.
I also have a card for her. Not sure why we do this. Why we feel the need to buy gifts or get cards for someone who doesn't even know they are there. I think we do this more to make ourselves feel better.
The nursing home has put a sign on her door that reads "Happy Birthday" and they brought some balloons. I was glad they did that because balloons are just a happy thing, always associated with happy occasions.
Mom ate her desserts well and even ate most of her lunch afterwards. Yes I fed her desserts before lunch. lol
Mom is getting worse, there is no cure for this disease and it is evident why it's called the longest goodbye.
Monday, September 15, 2014
The decision
The decision to move my mom to a nursing home was not an easy one, but I knew for her health and safety, I needed to move her out of her home. She lived alone and I was spending a lot of time going to check on her, therefore, taking time away from my family.
She was NOT eating, watching TV, sitting outside, things she normally liked doing. She was becoming delusional and paranoid.
I have 3 siblings, but none of them live in the state my mom and I do. My brother had worked at a nursing home and he said I was going to kill myself trying to take care of her and that if she fell or left the house and got lost that I would really have my hands full. So with all of my siblings blessings, I moved my mom to a nursing home.
I moved my mom the Saturday after Thanksgiving in 2011. Hard to believe it will be three years this November. It went by fast. As I look back at my Facebook post I see that on 11/3/11 I transferred the title of her car to me because she no longer needed or wanted to drive, on 11/11/11 I took her to the doctor and was told no more appointments necessary until after the first of the year, on 11/22/11 I spent the night with my mom still unsure if this would be her last week at her home, 11/26/11 moved her to nursing home. Wow, what a whirlwind month.
She was NOT eating, watching TV, sitting outside, things she normally liked doing. She was becoming delusional and paranoid.
I have 3 siblings, but none of them live in the state my mom and I do. My brother had worked at a nursing home and he said I was going to kill myself trying to take care of her and that if she fell or left the house and got lost that I would really have my hands full. So with all of my siblings blessings, I moved my mom to a nursing home.
I moved my mom the Saturday after Thanksgiving in 2011. Hard to believe it will be three years this November. It went by fast. As I look back at my Facebook post I see that on 11/3/11 I transferred the title of her car to me because she no longer needed or wanted to drive, on 11/11/11 I took her to the doctor and was told no more appointments necessary until after the first of the year, on 11/22/11 I spent the night with my mom still unsure if this would be her last week at her home, 11/26/11 moved her to nursing home. Wow, what a whirlwind month.
Sunday, September 7, 2014
Forecast
I titled this "Forecast" because this is what I want you to do as a potential caregiver and decision maker. Forecast what could happen with your loved one, the person(s) you just might have to care for. Forecast as far in advance as you can.
Here is a list of things that will help for easy transition of several things, including the mail!!! Yes, the mail!! This will be a list and you will read in my other blog stories why these are important.
I know more will come to mind after I publish this. I will add to it as I think of things.
Mail and other findings
1. Stop all unnecessary mail as soon as you can: charities, catalogs, magazine subscriptions. If this mail is not stopped before your address is the forwarding address, guess who is going to get all of this mail. BTW the mailman does not like for you to put (return to sender) on the mail. LOL--he was not happy with me. Sometimes on the charity solicitations there is a return postage paid envelope, if there is write a message on the donation card asking them to stop sending.
I still get mail like Dish network, credit cards etc for my mom and not sure why. Their mail will magically start coming to you with their name and sometimes your name. Mail you never would've otherwise received. I even get mail for my sister who used my moms address.
2. When it comes time to move them and before you have garage sale, call all of your friends, family to see if they want to buy anything. It's nice to get as much furniture (big items) out of the way so you don't have to deal with it at estate sale. Kids going to college always needs stuff....cheap!
3. Don't feel you need to buy your loved one a ton of new clothes for nursing home. If anything, buy them things now so they can get used to it. If they have dementia and you try to introduce new clothes to them they will think it's not theirs. True story!!
4. If you your parent/grandparent saves things that are not necessary, like old mail, magazines, paper in general, start cleaning out and throwing away as much as you can, or as much as they will allow you to. No when their sanitation engineer comes.
5. When you have the estate sale, have a company or someone on stand by to pick up all that is left because when the house sells the realtor will want all of it out. City codes may or may not allow you to leave junk for pick up. It's not pretty to look at anyway so it's better to have it picked up the day of estate sale or next day.
6. Pets--be sure you know what to do with their pet(s) if you are not willing to take them.
7. Pictures and other personal items-my sister mailed a lot of pictures to my mom. If you have siblings who gave you parent (loved one) pictures or personal items like jewelry then have them come get them. In my case I had to mail them. I didn't want all the pictures at my house and it certainly wasn't my place to keep any other personal items that I didn't give my mom.
Medicare/Medicaid, other medical, legal, bank accts, real estate, funeral
(please note that I am not a doctor or a lawyer and I do not play one on TV so please seek professional advice if you need it for your state as laws are different by state and change constantly)
1. Medicare/Medicaid...no the difference between the two
2. Find out if they have supplemental insurance
3. Hire a lawyer that is familiar with current Medicaid laws.
4. My mom was allowed to keep her car, even though she was not driving and living in a nursing home. (that law may have changed)
5. Find out as soon as possible the laws in your state regarding the house being "willed" to someone. If they are going on Medicaid chances are no one will get to keep the house. (my mom had a reverse mortgage so that settled that issue).
6. Have someone who is trustworthy and has the time to handle finances become a co-signer on checking acct. I pay the nursing home from my moms acct.
7. Pay for funeral in advance. Pre-need burial is an allowed expenditure after applying for Medicaid.
Before Nursing Home
1. In home care was something I tried for a little while. I really liked the company I used. If I remember correctly we had 3 people came on different days, a nurse, someone to clean my mom (we stopped that one because she didn't need it), a speech therapist. They noted everything and that was helpful. When they started asking me how long I was going to keep her home I knew it was time to move her out.
2. Police-mom called the police during the night on more than one occasion because she thought someone was in her house. Of course the police would then call me.
Nursing Homes
( I do not know anything about assisted living, private homes and/or options for those with long term care that will not depend on Medicaid)
1. Visit nursing homes, volunteer at potential nursing homes you will use
2. Always have a permanent marker!!! You will have to label things. Sometimes I would buy things on the way to nursing home to visit and would forget to label the items so I kept a permanent marker in her room.
3. Buying items for nursing home (we bought a TV, small fridge and chair for my mom) should be an acceptable expenditure. SAVE RECEIPTS
4. Know their protocol for:
1) When they hit another resident or a resident hits them. My mom got sent out two rehab at another location twice for hitting residents (I will go into detail on a blog about this)
2) When medicine changes
3) When they fall or have an accident
4) Will they allow hospice to take over when that time comes (I think most nursing homes do)
Here is a list of things that will help for easy transition of several things, including the mail!!! Yes, the mail!! This will be a list and you will read in my other blog stories why these are important.
I know more will come to mind after I publish this. I will add to it as I think of things.
Mail and other findings
1. Stop all unnecessary mail as soon as you can: charities, catalogs, magazine subscriptions. If this mail is not stopped before your address is the forwarding address, guess who is going to get all of this mail. BTW the mailman does not like for you to put (return to sender) on the mail. LOL--he was not happy with me. Sometimes on the charity solicitations there is a return postage paid envelope, if there is write a message on the donation card asking them to stop sending.
I still get mail like Dish network, credit cards etc for my mom and not sure why. Their mail will magically start coming to you with their name and sometimes your name. Mail you never would've otherwise received. I even get mail for my sister who used my moms address.
2. When it comes time to move them and before you have garage sale, call all of your friends, family to see if they want to buy anything. It's nice to get as much furniture (big items) out of the way so you don't have to deal with it at estate sale. Kids going to college always needs stuff....cheap!
3. Don't feel you need to buy your loved one a ton of new clothes for nursing home. If anything, buy them things now so they can get used to it. If they have dementia and you try to introduce new clothes to them they will think it's not theirs. True story!!
4. If you your parent/grandparent saves things that are not necessary, like old mail, magazines, paper in general, start cleaning out and throwing away as much as you can, or as much as they will allow you to. No when their sanitation engineer comes.
5. When you have the estate sale, have a company or someone on stand by to pick up all that is left because when the house sells the realtor will want all of it out. City codes may or may not allow you to leave junk for pick up. It's not pretty to look at anyway so it's better to have it picked up the day of estate sale or next day.
6. Pets--be sure you know what to do with their pet(s) if you are not willing to take them.
7. Pictures and other personal items-my sister mailed a lot of pictures to my mom. If you have siblings who gave you parent (loved one) pictures or personal items like jewelry then have them come get them. In my case I had to mail them. I didn't want all the pictures at my house and it certainly wasn't my place to keep any other personal items that I didn't give my mom.
Medicare/Medicaid, other medical, legal, bank accts, real estate, funeral
(please note that I am not a doctor or a lawyer and I do not play one on TV so please seek professional advice if you need it for your state as laws are different by state and change constantly)
1. Medicare/Medicaid...no the difference between the two
2. Find out if they have supplemental insurance
3. Hire a lawyer that is familiar with current Medicaid laws.
4. My mom was allowed to keep her car, even though she was not driving and living in a nursing home. (that law may have changed)
5. Find out as soon as possible the laws in your state regarding the house being "willed" to someone. If they are going on Medicaid chances are no one will get to keep the house. (my mom had a reverse mortgage so that settled that issue).
6. Have someone who is trustworthy and has the time to handle finances become a co-signer on checking acct. I pay the nursing home from my moms acct.
7. Pay for funeral in advance. Pre-need burial is an allowed expenditure after applying for Medicaid.
Before Nursing Home
1. In home care was something I tried for a little while. I really liked the company I used. If I remember correctly we had 3 people came on different days, a nurse, someone to clean my mom (we stopped that one because she didn't need it), a speech therapist. They noted everything and that was helpful. When they started asking me how long I was going to keep her home I knew it was time to move her out.
2. Police-mom called the police during the night on more than one occasion because she thought someone was in her house. Of course the police would then call me.
Nursing Homes
( I do not know anything about assisted living, private homes and/or options for those with long term care that will not depend on Medicaid)
1. Visit nursing homes, volunteer at potential nursing homes you will use
2. Always have a permanent marker!!! You will have to label things. Sometimes I would buy things on the way to nursing home to visit and would forget to label the items so I kept a permanent marker in her room.
3. Buying items for nursing home (we bought a TV, small fridge and chair for my mom) should be an acceptable expenditure. SAVE RECEIPTS
4. Know their protocol for:
1) When they hit another resident or a resident hits them. My mom got sent out two rehab at another location twice for hitting residents (I will go into detail on a blog about this)
2) When medicine changes
3) When they fall or have an accident
4) Will they allow hospice to take over when that time comes (I think most nursing homes do)
The most important thing I can tell you is to spend time with your loved one while they are healthy physically and especially mentally because time goes by so fast and once dementia sets in and takes hold there is no turning back.
Thursday, September 4, 2014
What this blog will be about
This blog will be about my journey with my mom and her diagnosis of dementia. I hope to help others and bring more awareness to this disease. I want to help on every level, as far as getting them ready to move into a nursing home, getting yourself ready to move them.
So many things go through my head that I want to tell others that will hopefully make things easier. Some thing may seem silly and some may seem well "duh", but since I made almost all decisions on my own I didn't always know what to do.
I will post videos and pictures of my mom that show the horrible decline of this disease. Some of these I didn't want to share on FB because it was just too much.
Please ask me any questions, as it is my goal to help anyway I can.
I will not post legal or medical advice as I am not a lawyer or doctor. I will only tell you what I did. What I chose to do for my mom may not be the best for your situation.
I hope you will take the time to read what I have to share.
So many things go through my head that I want to tell others that will hopefully make things easier. Some thing may seem silly and some may seem well "duh", but since I made almost all decisions on my own I didn't always know what to do.
I will post videos and pictures of my mom that show the horrible decline of this disease. Some of these I didn't want to share on FB because it was just too much.
Please ask me any questions, as it is my goal to help anyway I can.
I will not post legal or medical advice as I am not a lawyer or doctor. I will only tell you what I did. What I chose to do for my mom may not be the best for your situation.
I hope you will take the time to read what I have to share.
Subscribe to:
Posts (Atom)