LEAVE ME ALONE!!!!!!

I never thought much about respite care.  I could handle taking care of Calvin, after all, I'm only with him say 7 hours an evening (if I get to bed at 10:00 pm like I should) so it wouldn't be that bad.  Well, gentle reader, I say to myself "Think again, fat girl!"

At one point in time, quite gradually, my husband became my child.  No, he isn't really childish but he acts more childlike now.  Any parent who has had small children in the house will recognize these scenarios. Here are some examples:  If I am watching TV, I get a running commentary (usually of nouns and verbs strung together in an incomprehensible fashion) about what is going on.  If I am on the telephone, my husband has to offer commentary on my conversation, usually in the form of jokes that were once delivered with a great deal of cleverness and now lack the wit they once had.  I feel like:

I find myself sitting up until 2:00 - 3:00 am just to get some private time and that assumes that Calvin has gone to bed before me.  There are many nights when he refuses to take his bedtime medication and I have to trust that he won't wander the neighborhood, "protecting" me from what terrors in the night he imagines. You might ask how I can just to go bed when he is like this.  I have to.  I have to work the next day. I am the sole support of Calvin and I.

Paranoia is another aspect to C.T.E. and the delusions usually take on a violent overtone, such as Calvin being convinced that the neighbors across the alley have brought some big guy over and they are going to raid our garage for all the leftover holiday decorations and unused plastic silverware we have in there.  He might also imagine people breaking into the house when the streets are quiet and our 125 pound pit bull terrier slumbers in the living room.

So, I crave, I hunger for some quiet time.  I haven't even been able to write to all of you because I can't concentrate when my husband is awake.  I don't even get to read anymore and I have three books that I have started with no hopes of finishing anytime soon.  Tonight, I have enjoyed 3 hours of peace, blessed quietness, so far because my husband is napping deeply in his chair.  This can shatter at any moment but I will be as quiet as possible, watch my TV show and crochet in peace.  I thank the good Lord for bringing me this respite.  I now know that somehow I have to schedule respite care, I'm just not sure how that is going to happen or what that is going to look like yet.

Here's an old Gospel song that has been running through my head the last 3 hours.  Enjoy!

Gathering Tools for the Toolbox, Part 2

Hello, gentle reader!  I'm sorry for the silence but I have been checking out websites that were referred to me.  I will start with the websites that I found helpful so you can build your own Internet toolbox without having to spend your time wading through websites that are not applicable for C.T.E.

The most helpful website I have found is the Alzheimer's Association at www.alz.org.  There are many resources for dealing with dementia from educational materials, to planning helps, to on-line forums, to connections with the local Alzheimer's Association chapter which can give you information on local resources and support groups.  All of this is available free of charge.

The Caregivers Action Network (formerly known as the National Family Caregiver Alliance) and be found at www.thefamilycaregiver.org. This website offers education, peer support and resources to family caregivers across the county.  For all caregivers, those with children, those caring for senior, really anyone that is a caregiver for someone with a chronic or terminal illness.  There are many resources and a forum.  All of this is available free of charge.

The Well Spouse Association is for spousal caregivers and is a lifeline and a safe place for spousal caregivers of person with chronic illness and/or disability.  There is a newsletter, magazine, forums, blogs and events.  The annual cost for access to this website is $30.00 per year.

Lotsa Helping Hands www.lotsahelpinghands.com is a website you can use to coordinate meals and help for friends in need.  I have signed onto it for assistance with meals.  So far, I haven't had any hits, it seems to be dependent on people that are members of site.  The jury is still out on how helpful this website will be.

The ARCH National Respite Resource Center (www.archrespite.org) and the Family Caregiver Alliance (www.caregiver.org) are resource centers for finding in-home care and respite care when caregivers need a break.

The Eldercare Locator (www.eldercare.gov) website is run by the Administration on Aging which is under the Health and Human Services Administration (HHS).  This website is mostly for seniors 60 and over and addresses basic needs and offers a benefits check.  The website is a federal website clearinghouse and may be helpful if the one you care for is over 60.  If they have a low income, check out the Supplemental Nutrition Assistance Program (SNAP) to see if they are eligible for food assistance ("food stamps").  The website address is www.snapforseniors.com.

The Foundation for Health in Aging (www.healthinaging.org) is for people age 60 and over.  It was created by the American Geriatrics Society and is a clearing house for geriatrics, caregiving, medication information, advanced directives information and care options such as nursing homes, assisted living facilities, etc.

Need prescription help?  Try Needy Meds at www.needymeds.org.  They offer a discount card for prescriptions not covered by your insurance plan, over the counter (OTC) medicines and medical supplies with a prescription, vitamins and supplements with a prescription and it even covers pet medications,

You can also reach out to your local United Way, Council on Aging, religious charities such as Catholic Charities or Lutheran Social Services as well as your local poor relief through your local townships (if you are at 135% of poverty and below).

Websites that were not helpful at all but were recommended to me are:
Healthwell Foundation (www.healthwellfoundation.org) Financial assistance to pay prescriptions, deductables and health insurance premiums for those with certain diseases.  C.T.E. and Alzheimer's are not on their list to cover.

National Organizations for Rare Disorders (NORD) is a professional level organization and not for the average individual.  Also, C.T.E. is not a rare disorder.

I know this is a long post but I hope that I have given you some tools for your toolbox labeled "Caring for my loved one with C.T.E.).

May you have many good days with your loved one.

Heart of Love, Skin of Flint

Yesterday, my husband was mean.  Maybe he got a bad host at Mass because after Mass he started in.  "You need to check the tires"  me: "I don't have a tire gauge." him: "Why not, that's pretty stupid not to have one." and it went downhill from there.

We were on our way to dinner at some dear friends' home.  Thankfully, my friends ignored my husband's offbeat and snide comments.  After dinner, the ladies adjourned to the craft room upstairs (even though it is chock full of stuff, the space has got some great energy) and the gentlemen retired to the outdoors for smoking.  That was my only respite the whole day.

My husband is just going to say mean things.  It is the disease talking, not him.  Learning to develop a skin of flint is not an easy task for me.  I can be very tenderhearted.  Combine that with the fact that words were deadly weapons in my childhood home and you have a recipe for feeling inferior and tears.

Gentle readers, if you have a loved one with C.T.E., know that there is nothing easy about this process.  We will have to develop skills we never anticipated, like a skin of flint.  We cannot jeopardize our self image over comments said by a maimed brain.  They just don't know what they are doing.  When I confronted my husband on the way home, he was upset with himself and said: "I try not be an asshole but sometimes there is no stopping it.  I don't want to say those things but they just come out."

This is a difficult time to work on one's self confidence but we simply must.  We must be sure of ourselves as we care for the one we love.  We cannot become mired in the disease of C.T.E.  We need to do whatever it takes to keep our spirits up, our hearts full of love and our skins as flint.

Gathering the Tools for the Tool Box

Hello, gentle readers!  Today I'd like to address the tool box.  The tool box is an accumulation of resources that you can tap in to when you have a loved one with C.T.E.  In the beginning, no one told me a darn thing about how to handle this, where you can find information, where you can find help and where you can find respite.  This will be a multi-part post.  It might be dull for those of you who don't have a loved with C.T.E. but part of the reason for this blog is to help those who have to navigate these waters.

1.  Calling it C.T.E.  Most people will look at you blankly.  You can also call it T.B.I., traumatic brain injury.  People seem to be able to wrap their brain around that term.  So, my husband as T.B.I. with dementia.  I say that, people get it.

2.  Applying for Social Security.  There is Social Security Disability, which is based off of how much one has paid into the system by working.  If your loved one doesn't have a long work history, you pretty much don't have a prayer getting this.  I know, I know "but Terry, drug addicts get Social Security, all kinds of deadbeats get it." Yup, that's why my husband, who doesn't have a long work history, can't get it today.  Apply yourself the first time.  You will get turned down, Social Security Admin (SSA) always does that.  After you are turned down, get an attorney who specializes in SSD, they are worth it (or at least so I am told).  SSI is Supplemental Security Income is the elderly, blind or disabled that have little or no income; same procedure as applying for SSD.  Go to www.ssa.gov for more information.  BTW, after 3 attorneys and over 25 years, I am still trying to get SSD for my husband.  Yeah, I'm stubborn.

3.  Check out the Alzheimer's Association at www.alz.org.  They even discuss C.T.E. under their "What is dementia?" page.  Also, the Alzheimer's Association has forums you can participate in, which are very helpful.  There is a 24/7 number to call and talk to a live person.  The Alzheimer's Association has partners with Medic Alert (the bracelet people) and offer the Safe Return program.  If your loved one has dementia and wanders, this program is well worth the money.  Be sure to check it out.  There might be support groups in your area for caregivers.  I am checking out the ones in my city in August.

4.  If you are a person who worships regularly, be sure to talk with your clergy person about how your house of worship can help. This is not a resource we often think about but it is well worth exploring.

5.  Consider the Family and Medical Leave Act if you need a lot of time off work to care for your loved one.  This is unpaid leave but at least your job is kept open for you.  A Google search of Family and Medical Leave Act (FMLA) is helpful.

6.  Start checking out the in home care services that are available in your city.  If you have insurance, take the time to call your insurance carrier to find out what they cover for in home care services and residential care (nursing homes).  For in home care, there is skilled nursing care and companion care (this might go by other names).  Companion care is a non-nursing person who comes into the home and helps with personal hygiene, meal preparation, companionship, light housework and perhaps even transportation to appointments.  Find out about what is available before you need it.

6.  The Home Environment.  I found that keeping the house quiet in the evening helps with sundowning.  I also try to keep my husband on a regular schedule so he has some stability, which is calming for him.  Also, even if you can't go out as much because you need to be with your loved one, keep contact with family and friends through phone, e-mail and social media.  Be sure to do things for yourself.  I find it VERY difficult to take care of myself.  I frequently run myself ragged taking care of my husband, working my full time job, working my part time job and researching his C.T.E.  I have my crochet and my genealogy work, which relaxes me.

7.  Do things to make your life easier.  Don't have time to write checks for bills?  Use your bank's bill pay system.  Are there things that need done around the house (small repairs, etc.) get them taken care of now if your loved one isn't too far along.  By anticipating your future needs, you can hopefully eliminate stress further down the road.

8.  Check out Teepa Snow.  Teepa Snow has been working with dementia patients for over 30 years.  I went to an all day seminar with Teepa and found the experience eye-opening on dementia and how I can care for my husband better.  Teepa's website is www.teepasnow.com and she also has a number of You-Tube videos out there if there isn't a seminar near you.

Wow!  I've listed quite a bit here!!  If you have questions, please post a comment.  I do read each comment and I will respond as best as I can.

Blessings to you all!

I Want ..

. . . my husband to be how he used to be.  He used to be funny, clever, have a wonderful wit, giving, creative, inquisitive, well-read (even though being a dyslexic made that a real challenge).  He would spend hours in the garden and his gardens had well thought out plans.

With C.T.E., the person afflicted leaves you in bits and pieces.  Some days, that is just so hard to take.

Before I start crying, I leave you with an adorable video with a wonderful message.

Blessings to all of you, my gentle readers.

Take Up Your Cross

As we Roman Catholics see it, taking up one's cross is not a bad thing.  Let's be brutally honest, life sucks.  It does.  There are many bad things that happen to good people while the bad people seem to prosper.  This has been a thorn in the side of Christians and Jews since Biblical times, when the psalmist bitterly complained about the same thing to God.

We are going to suffer.  That is life.  But, when we take our suffering, take up our cross as it were, we are uniting with Jesus Christ, the Son of God, as He makes His way to Calvary.  Here is God, marching along a dusty road in great pain, carrying a heavy wooden beam on His way to execution.  God suffered.  Think about that, the Creator of the Universe, the Almighty God, knows what it is like to suffer since He, in the act of carrying His cross, united with us, the beings He created.

The thought of God intimately understanding my suffering gives me great strength and great hope.  Although I must walk this lonesome valley by myself, God is above me, sheltering me in His wings, His Holy Spirit giving me resolve.

Well, That Didn't Last Long

He's been home for 6 hours and I am already going nuts.  Where's the great caregiver? Flew right out the window.  Just regular old Terry is left.  Oh, I was good and didn't yell at him for taking 2 1/2 hours to prepare to walk our dog on our 0.25 acre of land.  Nope, I sure didn't.  I didn't even yell at him when he packed more gear in his black bag for a 15 minute walk around the yard than some people pack for a month on the Appalachian Trail.

You have NO idea how badly I wanted to shout "Get the hell out of the house for pity's sake!  Just walk the dog so we can go back to watching our movie!"  Yup, rented a movie on Xfinity for $3.99.  Got to see about 7 minutes of it.

The "Great Caregiver" has left the building.  Grumpy Cat Terry is going to bed.