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Old 02-06-2010, 05:25 PM   #1
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nanahelper HB User
New to board..Need help

I recently moved home to help my mom and dad out with my grandma. She is 76, she had a pretty big stroke about 6 years ago and had a pacemaker put in. About 5 years ago she started having seizures and the dr. put her on several meds. The neurologist said that she has probably had several smaller strokes. 4 years ago dr. said she had early stage dementia brought on by the strokes. Her decline was slow in the beginning. She could still drive and take care of herself but, my mom and dad had to move so they had to move her into the new house with them. She fell down about 6 months later and the decline was drastic. She relied on my mom for EVERYTHING. My poor mom couldn't sleep in her own room for 8 months. She started forgetting family members only remembering my mom and dad, couldn't bathe herself, started being incontinent hiding it by flushing her underpants, and bringing up the past as if it happened yesterday.

9 months ago I moved it to help out. My mom and dad have been taking care of her all by themselves (even though there are 3 other siblings) taking care of her has taken a toll on them. I noticed that the past 6 months she has really declined. She has had sundowner's for about 3 years but, now it is really bad, she get angry at the drop of the hat and tries to throw guilt trips to my mom. She needs to know where my mom is 24/7 and if my mom goes out of the house she cries. They have her on a schedule for the past 4 years but, now she fights that schedule tooth and nail. Hasn't been able to tell time or what date it is for awhile. She cries all of the time and mubbles to herself and tells us that she is moving out. She doesn't want to eat anything that she has to chew and her incontinence has gotten worse.

We don't have the money to put her in a NH or have the money to get help for us. It is really taking a toll on my mom. What can I do to help her out? My grandma doesn't listen to me she is really rude to me. Actually rude to everyone. I make my mom and dad get out of the house every week but, my grandma will sit and cry for two days after to get my mom really upset.

Looking at the stages of dementia I think she is Stage 6 or early 7. Am I correct? She is on several medications for diabetes, thyroid and plavix. She has the pacemaker and the dr. said that she has a lot of damage to the back of her heart. What is going to happen next with her? What should I look for as she progresses in this horrible disease?

Thanks in advance.

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Old 02-06-2010, 06:26 PM   #2
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Re: New to board..Need help

Bless you Nana for taking this on and trying to help out your Mom. I am sure that caring for your grandmother has been difficult for her. I truly hate that you needed to find us but so very glad you did. This is a great group that has good ears, strong shoulders, lots of experience, and sometimes even good advice.

What you describe is classic. Your Grandmother is not doing any of this intentionally. It is the disease. Grandmother has become dependent on your Mom just like a child is dependent on their Mom. I would say you are probably at one of the very worst parts of this disease. It is when anger, confusion, and distress takes over and Grandmother doesn't know how to handle it. I would suggest that you let the doctor's involved in Grandmother's care know about her angst. There are medications that will help. She might do well on an antidepressant, antipsychotic, or antianxiety medication. There are meds that will calm her down and take the edge off of her anxiety without causing her to sleep all the time. It may take some trial and error to find the right med but it is worth the effort. My mom was the most angry, depressed, combative person around... until the meds. Today I had a delightful visit with her and she laughed and smiled most of the time. Now I can come and go without the tears.

Medication is not for you or your Mom though the benefits will be good for you both. The medication is for your Grandmother. She is in emotional pain not knowing what is going on in the world around her. Just as you give her meds for her heart and other issues, she needs meds for her emotional distress as well.

It is difficult to tell what lies ahead. Each is different. But it will not get better. It will only get worse. Eventually she will need soft finger foods because chewing and using a fork does become difficult. Her fine motor skills will do which prevents the use of utensils or even how to get food to her mouth. Then you may need to feed her puree foods. She will eventually lose the ability to walk by herself and her large muscle control leaves her. She may use a walker for a while and then need a wheel chair. Dad forgets he can't walk so he tends to get up and fall a lot. For a while she will try to hide the incontinence. She may even play with the excrement. But then she will just use the pull ups and have no knowledge of bathrooms and what they are for. As the brain is clouded she will become less and less aware. Eventually the ability to swallow will be affects and at that point you know the end is near.

Each happens in it's own time and is different from each person. Dad has had vascular dementia for 10 years. His decline was very slow until the last 4 months and he has gone rapidly downhill since then. Mom has been diagnosed with ALZ for 3 years and she is much as you describe your grandmother.

As for nursing homes... Depending on your grandmother's situation, if she has no personal property, money, or income then she would qualify for Medicaid and it would pay for her care in a facility. If she did have some assets then that would need to be spent on her care and then Medicare would take over. You need to talk to your Grandmother's physician about the possibilities. Also there is some coverage under Medicare for in home help, at least on a temporary basis, if the doctor prescribes it. So check with Grandmother's physician.

I also suggest you call your local Alzheimer's Association. They have counselors that can guide you thought the process of Medicaid, available facilities, and the help you will need. Our local chapter also has volunteers that will come over and help out occasionally.

So check with the doctor about medication to control Grandmother's emotional distress. Keep making sure Mom gets some time away and hopefully the medication will change what Mom comes back to. Check with the doctor and the Alzheimer's Association on Medicare help or Medicaid help and the possibility of placement in a facility

You are a wonderful daughter!! Keep asking questions and keep venting...

Love, deb

Old 02-07-2010, 03:55 AM   #3
Martha H
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Re: New to board..Need help

I am sorry your Grandmother has this terrible disease.

My Mom had it too. I moved n with her and lived there for over 5 years. I was in the same position as your Mother except there was no Dad or daughter there to help me.

I just want to tell you that she can go to a good nursing home without having any money. If your Grandma is not the owner of the house or any other real estate, and if she does not have more than a set amount in the bank, she is eligible for Medicaid. (your parents assetts do not count). If your parents consult an Elder Lawyer, they can find out more. She will be admitted to a good NH and get the best of care around the clock.

Money is not usually the barrier, more often it is guilt. Children of AD patients feel guilted into caring for them at home.

I highly recommend trying for Medicaid. Above that, your Grandmother is probably in Medicare (everyone over 65) and they too will pay for a short stay at a hospital or rehabilitation center, and the transtion from there to NH care is easier than from home to NH.

I wish you luck with it. Consult your doctor, consult a lwyer, get all the necessary paperwork in order, and your grandma will be in good hands 24/7 --- and your Mom will have her life back!



Old 02-07-2010, 07:06 AM   #4
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Re: New to board..Need help

Yes, Nana. There is lots of help out there. Your parents just have to start digging for it. When you get your grandmother in a nursing facility, It will be much better for everyone involved, including her.

First step would be to contact an Elder Attorney to find out about assets, etc. Then start looking a Nursing Homes where you want her to be and get your name on their waiting list. They can possibly help you get the Medicaid set up once they have done their evaluation.

Best of luck. K

Old 02-07-2010, 11:42 AM   #5
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Re: New to board..Need help

Everyone has to realize that there are alternatives out there than caring for someone in their home. They need to be dirt poor, only having about $2k to their name before federal assistance steps in.

Some people like my sister didn't want to go through mom's money for a nh care because it was the only money we had since she was not working being Mom's caregiver. And work wasn't plentiful. So if we used all the money putting Mom in NH and then sister was unable to find work that paid enough to cover the bills, we'd have been screwed.

So she did keep Mom home as long as possible. Had we known that in 2007 the small pitence sum of money we had left was 'ours' (my sister's and mine) to do with as we wanted, we would've put Mom in NH back in 2007. Not being aware of the law and what it was, thinking we had all the answers, etc. turned out not to be fact and Mom probably would've been better off there. I know it would've been better for my sister.

So folks don't always think it has to be the way it is for you. Ask social security, ask Medicare, ask Medicaid, ask an elder lawyer knowledgeable in these things and then make the informed decisions.

Many families --are suffering in silence -- and we know not what goes on behind closed doors -- and that is the shame.

don't we all feel "had we known then, what we know now -- how different things would be"


Old 02-07-2010, 01:55 PM   #6
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Re: New to board..Need help

can you try medicade? it sounds like you would qualify. its so much more stressful at home.

Old 02-07-2010, 03:48 PM   #7
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Re: New to board..Need help

I moved back into my parents home 5 years ago to help dad take care of my mom who had numerous medical conditions a long with the dementia. Her decline medically really began in 2007. She had one medical sitauation happen right after one another. Each situation caused more confusion and agitation to her. Finally the rehab facility she had been admitted to 6 times since 2006 told us last June after Mom had fallen and fx her hip it was time to do long term care for mom. It was for her own safety. Dad and I agreed it was what needed to be done for her own safety. We tried so hard for so long to keep her at home. Most of the caregiving was done by dad as I worked full time during the day. It was taking a toll on him... Mom's transition to Long term care was an easy transition as she already knew the facility after all she had been it 6 times since 2006. We knew the place like it was our second home. She was comfortable there and we were too. Plus it was 1/4 mile up the road from our house. We really did luck out with having a great facility. We were very fortunate. Once I knew she was never comng home I started the Medicaid process as Medicare only pays for 100 days. Then it is either private pay or medicaid. The only thing worth money in her name was the house which we were able to put in my name as her caregiver for five years. So that took care of that . So she qualified for Medicaid. The process is very involved and you do need either an elder lawyer or a medicaid consultant sometimes the facilties can recomend one to you. The easiest way to have your Grandmother be admitted to a NH is going from the hospital to a facility as opposed from home to facility. A lot of times doctors can have a patient be admitted for change in mental status then from there you would work with the hospital case manager on facility placement.

I wish you all the best on this road ahead its not an easy one. My journey on this road ended on October 22 2009 when my dear sweet mom passed away.

Love pauline

Old 02-07-2010, 03:58 PM   #8
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Re: New to board..Need help

Hi nanahelper, The recommendation about an elder attorney is good (but everybody is going into the "elder" business these days, so you need to be careful), but you mentioned money. Are there any "aging" resources in your local area? A town or county Commission for Aging? Or something along those lines? Or maybe the local hospital could point you in the right direction. You might be able to get at least a basic orientation of resources/possibilities for free. There may be support groups around for free . . . besides support, others with more experience can be great resources.

Personally, I would be looking at medication for your grandmother's behavior (there are things to try) because I thought about them for the caregivers.

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