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Old 12-26-2009, 10:04 AM   #1
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Dementia and life

I'm really not for sure where to begin. I've been the main caregiver for my MIL for almost 7 years. This may sound silly but I'm not for sure what kind of dementia she has and honestly don't think it would make a difference to know at this point.

She turned 90 in Oct. We're blessed she has always been very sweet and even tempered. I believe she is in the last of stage 7 but my wonderful hubby doesn't. She doesn't sleep at night and that seems to be the norm . She may sleep and hour or two here and there through the day. One of my biggest blessings is I have a son that lives with us and helps me out so I manage to get a few hours sleep here and there.

She got a bladder infection that turned into a bacteria infection of the blood. We wound up at the hospital the day before thanksgiving for a 24 hour period. Anyways as we all know that caused her to go down hill very fast. Over the last year or so she has done the eating not eating thing but since her bladder infection it's gotten really bad. I read alot of post last night and it helped me understand better but scared the heck out of me too. She's lost 10 lbs the last month. In the last two days she hasn't eaten more than a mouth full total. She still walks a tiny bit with someone helping but spends most of her time in the wheel chair or laying on her couch. She does live with us so we're blessed to know the kind of care she's getting.

It gotten to the point I can't leave her to even go buy groceries. We have had my step daughter come twice to take care of her while we went to lunch and buy a few groceries. But I'm a nervous wreck and so is my step daughter the whole time I'm gone. I spend all day and night unless she's asleep sitting with her, changing the depends, helping her pick her feet back up onto the couch or just sitting her up. Believe me there's no complaining here I love every minute of it because this is the end and she will have a loving quality to it. I had a double spinal fusion a few years back that never got to heal right because of all the lifting/pulling it takes to make her life good. There is no one to talk to it about here because the little tiny lady was/is the main support for her family. My husband loves her more than anything/one in his life. It's going to be all put on my back when she passes to support him and his kids through this. Mostly I'm very tired, scared, frustrated, upset that it's got to happen this way. No one can or will help us in his family they all think she should be in a NH.

I'm sorry for rambling on and maybe this won't make much since but I'm so happy to finally at least be able to write it to someone that will listen, answer and understand.

She is never still not for more than a couple of seconds when she's awake. either moving her hands, feet, sitting up, or something. She hallucinates alot to. We have her on Aricept and a med that starts with a h for hallucinating. I'm having a lot of trouble getting her meds in her because of her not wanting to eat and her drinking has slowed a lot.

 
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Old 12-26-2009, 11:14 AM   #2
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Re: Dementia and life

TexasLily,
Bless your heart for taking such good care of your MIL and your family ... Does your MIL have a physician/geriatric specialist to address her recent weight loss and to help you through caring for her during the last stages of this disease? The aricept is probably not helping her at this point and could be discontinued, and stopping it might actually ease some of the other issues she's having, but her doctor can better address that.

Others on this board have kept their loved ones at home til the end and some have transitioned to NH care ... you have to do what's best for your family as a whole and be at peace with your decision. Hospice can serve your MIL and family at home or in a nursing home/hospital. Do you have any other help in the home? The hospital or her doctor should be able to refer you to a visiting nurse service that will have referrals of professionals who can help with her care at home, or sitters they recommend who could stay with her while you get some time away, even if it's just a worry-free trip to the grocery store or to get your hair done or take a walk.

I'm sure the other ladies on this board will respond to your post and their advice will be invaluable to you, as it has been to me when I was caring for my dear MIL and FIL at home. Please don't compromise your own health/well being ... I know your family and MIL depend on you now for her care, but they will also need you once she passes on to a better place, so please take care of yourself for your own sake and theirs!

Blessings to you,
Shelle

 
Old 12-26-2009, 11:43 AM   #3
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Re: Dementia and life

A visiting nurse, even if only a few days a week to help with bathing would be a good idea. But you may want her evaluated for hospice care. Hospice care can be done in your home, you don't have to send her to a facility. They will provide you with the proper information, palative drugs and hospital beds to make her transition as easy as possible. They will explain the body shutting down process and what your options are. And what those options might entail, such as feeding tube or intrevenous fluids. A friends mother had hospice and it was amazing to learn that some things we think are good, like a feeding tube, really are not. And the signs of the body shutting down were so spot on. I think that is really your next step. And if your husband is really close to his mom it might be easier for him to hear what will happen from a professional than from you. It will also hopefully prepare him for the inevitable.

People like you are Angels on earth.

God Bless.

 
Old 12-26-2009, 12:07 PM   #4
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Re: Dementia and life

Texas, you are one strong and giving lady. But I think you need to give to yourself more. The hospice advice was great. Your MIL sounds like her body is starting to shut down, and the wonderful hospice folks can do so much to help you. Please give them a call and they will come out and do an evaluation and explain options that you've never even thought of.

At this point, it really doesn't matter what anyone else thinks you should to. You have gone above and beyond. And if you want to continue to the end, then that's what you should do. But, please take care of yourself. If needed hire a qualified sitter to come in and give you a well-deserved break. Not trying to be too nosy, but what does your husband, her son, do to help take care of her? Yes. Men can do caregiving, too!

Make a point to start calling hospice or whoever on MONDAY. You need help.

Take care. K

 
Old 12-26-2009, 12:59 PM   #5
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Re: Dementia and life

shelle yea her regular Dr has been taking care of her for so many years he's more like an adopted son. He insist on us calling him even at home if I need anything we are so lucky with him. It's a very new thing for me to talk about her to anyone. Most people don't understand and think I'm either crazy or special for taking care of her, I'm neither just lucky. It upsets me for them to tell me your doing such a good job and then turn away to go back to their everyday life without offering to help or even spend a few hours with her. My hubby helps me too but as crazy as this sounds she Cry's and gets really frustrated if anyone but me takes care of her. But I do agree for my sanity I have to get away some and just sit in the sun or even take the time to go get my nails done. lol the lady that does them comes to my house.

From all my reading on here there is so many different opinions on most subject and none of them are right or wrong just whats best for the person living it. We do have a couple of nurses coming in twice a week it's new to us so we will see in time but they both seem very nice and deal with MIL very kindly. I will talk to them about helping me with her by giving sponge baths. I shower her once a week and sponge bath her daily.

wasfatnomore your probably right hubby needs to hear it from someone who knows how to explain it. He is so amazing with her. They have been together every day for his 58 years except twice a year for our 10 day trips. But he's like that with me too he loves with every ounce of his being. He has a physical on Wednesday so maybe I'll get our Dr to explain it to him. He doesn't get to help much he works 12 hour shifts and drives 45 minutes each way.

Ken boy howdy do I agree my guys are wonderful caregivers. My son sits up every night from 9 to 2 so I can sleep and doesn't wake me up unless she fills her depends or gets to crying/yelling and he can't get her to calm down. My hubby is to funny he feeds her or at least tries. It's so funny this tiny little lady gets so mad at him for babying her she won't eat and if he pushes her she cusses at him lol. The only thing I can't get through their heads is to not ask " do you want a drink or are you hungry lol" I just say take a drink or open for a bite.

There is some really good things that comes out of this too. Don't get me wrong having her here is also a funny, beautiful life. She will wave her arms in the air which tells me to come to her. Then sometimes when I lean down she will wrap her arms around me and pat me. But there are things that I miss we use to dance in the living room , sew together and of course our fav was cooking together. The one thing I'll say about all we do is we are the ones that will have such wonderful memories of them. Once my hubby came in from a very very cold outside and hugged her. As soon as his ice cold body touched her she yelled with her mouth wide opened and her teeth fell out onto the floor. I thought we all was going to laugh until we cried. So you see we are the blessed ones.

I have been thinking about hospice but haven't done it yet maybe it's like some of you said that would be accepting we are at the end and maybe my heart is winning over what my head is saying but not for much longer. I have to be realistic about it right.

Haliperidol is the meds he added

Last edited by texaslily; 12-27-2009 at 08:18 AM. Reason: added meds dr gave her

 
Old 12-26-2009, 02:45 PM   #6
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Re: Dementia and life

Well, Deb. I think we have a new candidate for "Sainthood"...

Do we call her St. Tex? St. Lilly? St. T.L.?

St. Lilly of Texas...you are one in a million. You get a special star. And I'm so proud of your son in the role that he's playing in this. Your whole family sounds like a group of really great folks. And your MIL must be a really special lady to have gained so much love from you all.

I hope that as the end draws near, you can all let it be a very peaceful, beautiful experience. When our Hospice called me to let me know that Betsy was nearing the end, I drove there with such great dread, and It was such a lovely experience. I know that sounds strange - that watching a 53 year old woman that I'd known for over 30 years, to draw her last breath as lovely. But it was very peaceful. And I'm so glad I was there for our last moment together.

But, please. Let people help you when they can. Don't worry about the ones who chose to look the other way. Being aware and prepared for the end is the best thing you can do for yourself and your family. Celebrate her life, don't mourn it.

My best. K

 
Old 12-26-2009, 03:50 PM   #7
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Re: Dementia and life

St Lily of Texas it is!!! Your attitude is amazing and your tender heart comes through. The fact that you can laugh and enjoy your time with your MIL is special. You are one that will make it to the end.... but you do need a break now and then and more than a few hours of sleep. Help is essential!!

As for the meds. Aricept is probably not doing your MIL any good at all. It is designed to delay the progression in the early stages. It is one pill Mom could probably do with out and you should check with your doctor. It can also cause some of the agitation that you see. I wonder if the other med is Haldol. If so, I do believe that Hadol comes in a patch!! Please call your doctor and ask about it.... or your pharmacist may be able to tell you for sure. It could be the answer to your problem

Hospice is amazing. My FIL was under the care of Hospice after suffering a massive stroke. Hubby, who does not deal well with such, was handled with kid gloves and made to feel comfortable while he was there. They were so patience in explaining what was going on and giving kind words of encouragement without giving false hope. It was a good experience for the entire family.

Your MIL is used to you being there and yep she will probably balk if you are too far away. But for your own good you really do need some time for you. You are already exhausted and you have a difficult road ahead of you. So you need to get yourself back in top shape. It is great that your son, DIL, and hubby help but you do need a little more. And when you get away you need to know that MIL will be ok until you get back. Take advantage of the visiting nurses if it is just for a walk around the block or a quick nap. Be creative in finding a different way so that you get the rest that you need

Know we are all here for the long haul with you. Here's your towel and know we have the other end Lastly, Welcome to our little corner of Planet Alz!

Love, deb

 
Old 12-27-2009, 04:26 AM   #8
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Smile Re: Dementia and life

You two are way to funny. I almost blew coffee all over my laptop laughing so hard when I read about my st hood lol. My name is Teresa so next your going to call me Sister Teresa . Frances makes it easy to take care of her. She is the calmest sweetest person ever.

I slept all night last night only had to wake up 5 times. Michael my hubby and yea your right my sweet son took care of her. She somehow fell last night. She still sits up and stands even turns around to sit in her rocker.. Well last night she missed hitting the floor. She may have a bruise this morning and sore.

Y'all won't believe this but that son of mine is boarder line retarded, bi polar and his natural mom was a dope head and a alcoholic. He is mentally 9 and had severe behavior problems until he reached 20 but he loves his grandma more than life itself. Isn't it funny what makes him love and helps him stay calm, it's a little tiny 100lb 5' 2" lady.

I think my hubby is starting to believe we are near and it's best for her. He will fight to keep her alive to the end still. He was watching her in one of her dementia babbles and tears rolled. I just petted his leg.

 
Old 12-27-2009, 04:46 AM   #9
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Re: Dementia and life

Teresa, your son is a perfect example of the fact that what the world calls "intelligence'' is only one small aspect of how to get along in this world. Caring, being able to love and protect someone, taking care of someone's basic needs, all of that is a kind of intelligence not measured on tests. I thank God for your son.

In my opinion , as expressed bfore, anyone who takes full time care of a Dementia patient for months and years on end is a saint. It does not mean they are perfect. It just means they have a giving spirit rather than a taking spirit. They don't think ''what's in it for me" but ''what does this other person need, and how can I help?"

I am happy to have you on this Board. I am a 'graduate' who keeps coming back. This disease took my Mom 2 years and 2 days ago.

Love,

Martha

 
Old 12-27-2009, 06:36 AM   #10
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Re: Dementia and life

ST. Teresa (now, we REALLY have an official name)

That made my day. Glad you could have a good laugh.

I, too, am an alum. I, fortunately, had to accelerated version of caregiving for my wife. But, believe me, I learned a WHOLE lot in a year and a half! And I feel that the best way I can serve is to pass it along to other folks who are struggling now. And my somewhat strange sense of humor is an added bonus!

Isn't it just amazing how someone like your son, who the world would probably dismiss as being unuseful, can take on such an important and giving role that most "normal" people would run from.

You just hang in there, you are fighting the good fight. And have become quite an inspiration to me, and probably a lot of others.

I hope your husband and the rest of your family can let his mom go with grace and dignity and in peace.

Love K

 
Old 12-27-2009, 11:10 AM   #11
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Re: Dementia and life

I totally agree there there are many types of intelligence and there is value in everybody. I am not surprised at all that your Son and his grandmother have found a connection. It is a relationship based on unconditional love without the expectations that cloud so many relationships. What a blessing it must be to watch the two of them.

If you don't have one you might want to get a bed/chair alarm to warn you when your MIL is moving out of place. It's a simple unit that clips to the bed or chair with a cord clipped to her. When she moves out of range the cord pulls a sensor that sets off the alarm. It's not restrictive at all but gives you a heads up. It might even allow you to go get a cup of coffee You will hear the alarm in the next room and can get back if she's slow.

As for the falling... she may have a bruise or be a little sore but it's better than not letting her move. I have had Dad to the ER three times for falls including a nice knock on the head. But we let him walk when he can. It makes him happy, the exercise is good for him, it pleases Mom to walk with him, and what happens will happen. We did have a alarm on his bed for a while so the staff would know when he was trying to get up and could go help him because it was when he first woke up that he was the most unstable. So no worries about the falls... they happen.

The last time Dad fell and was transported to the ER I was there before the medic assessment was done. I walked up, looked up at Dad, and just ask "How did you get down there". He smiled up at me and said... "I was tired!" I suggested perhaps the bed would be more comfortable and rode off into the noon day sun with him in the ambulance. He ended up with a scrapped elbow, got the nap he wanted in the ER, was scanned out (CT) with nothing broken, and returned to his bed by bedtime none the worse for wear. I was the one that was worn out! Yep, they do happen you can just do the best you can to prevent them while giving them the freedom they can manage, and hope for the best but no guilt!

Love, deb

PS... I guess I am a working pro! My grandmother lived with us on the weekends when she suffered from ALZ. Because of her I spent many years working in Long Term Care. My Dad has been diagnosed over 10 years with Vascular dementia and was home for 8 of those years. Mom has been diagnosed for 3 years with ALZ but I know she was showing symptoms for years before that official diagnosis. They are now in a locked ALZ unit. And I am recognizing symptoms in my MIL as well.... which is a whole other story

Last edited by Gabriel; 12-27-2009 at 11:10 AM.

 
Old 12-27-2009, 03:56 PM   #12
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Re: Dementia and life

One of the other great devices to come our way is the baby monitor -- they even have one with the camera built into it but its one way -- you can hear them but you can make all the noise you want and they can't hear you.

We used one with my mother when she was upstairs and my sister needed to go downstairs for any reason.

CaringSister54

 
Old 12-28-2009, 05:47 AM   #13
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Re: Dementia and life

Martha thanks and as you'd probably agree we also get a lot out of taking care of them. She has been such a huge happy part of our lives. As silly as this may sound what do I do when we don't have her. I've given up everything to spend her last days as happy ones? That is scarier than loosing her because I know she will be in heaven with her husband.

Ken my son and my hubby have always been kind of tolerant of each other but since this has happened they not only like each other but respect is there too. To be 100% honest with you I never would of thought Tim had it in him to do all he has done for her. Not for any other reason than he is mentally nine. Goes to show you what your kids can teach you. You and I are going to have a lot of fun terrorizing these people if you have a quirky personality. I love to make peoples jaw drop lol. Not in a bad way just to shock them and give them a good laugh, sure makes life interesting. I have a sneaking suspicion I'll loose my saint hood fast . Maybe this is what I'm suppose to do after she is gone, help others through it. I'm also thinking about going to college time will tell.

Deb that is a good idea. We are calling for a hospital bed today and that would kind of be the icing on the cake. One of us is always in the eye sight area but if you look away for two seconds she is off and running lol. Well off and moving. Deb that is a cute story. Sounds like he's a lucky dad. Sounds like you should have he saint in front of your name instead of me lol.

I got to get out yesterday and take 4 of the granddaughters shopping man was I pooped when they was through with me. It sure was fun and for once I didn't worry about home. She hasn't ate hardly a bite but for the first time in years she dozed all night. I put her on her couch in the living room and napped on the other one. Tim was in the recliner playing his x box so she was well covered. This morning my main chores is to start the process of getting a hospital bed in the living room for her and that magic alert button. Oh and talk to the Doc about no Arecipt.

 
Old 12-28-2009, 06:21 AM   #14
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Re: Dementia and life

You are right, Tex. I have found that I help myself the most when I'm helping someone else. It's just when I focus on ME and all of MY problems that I get down and out.

I think I was probably an angry, resentful caregiver for quite a while. But, especially after she went to the nursing home, I was able to be much more caring and tender with her. ANd I"m glad for that.

I was ALWAYS completely stressed out when she was home, and I was trying to raise my 15-year old daughter, and find a job. And resented the hell out of being trapped at home so much of the time. But that's all behind me, and I'm ready to move on.

Have a great day, and we'll talk more later. K

 
Old 12-28-2009, 01:02 PM   #15
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Re: Dementia and life

Ken. Please keep posting as you are totally down to earth. Mum died after 9 years of progressive dementia...8 months later my BIL was diagnosed and, as there was only my husband and myself, I became POA again and responsible for house/car etc sales. Was I resentful...you bet...particularly as I am a cancer survivor and was just at the full strength back stage. Guilt about that feeling too so it is good to hear that others were in that place for a while. I have nil guilt re secure units and specialized care. Your parent/relative now becomes your child, a complete role reversal, and you do whatever is necessary to keep them safe. I hope that your daughter came through this positively. Ce

 
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