Caregiving...

[srussell]

Since I'm a strong independent male who never likes to ask for help, I reluctently find myself asking for your input now...

My elderly in-laws have moved in with us because they can no longer care for themselves. My wife is a nurse who is doing my mother-in-law's wound care, etc. My father-in-law is borderline Alhemizer's who keeps asking me if we have a toaster and drinks too much coffee (we're bait-n-switching him to decaf today).

My wife has been an excellent patient advocate though all of this and is pulling all her resources from her ties in the medical community

I'm looking for blogs, forums, shotgun vendors and other resources (i.e "I-village" type of communities) and other "baby boomers" that are in similar situations.

MY SCRAPBOOKING FREINDS! ANY HELP IS GREATLY APPRECIATED!!!! I find myself at wit's end only after a week and the tequila bottle is looking tempting.

[Marion]

Hang in there Steve! I had my inlaws live with us for 7 months while recovering from heart surgery. We still had 3 teenagers in the house at the time, so we had some clashes and it was very difficult. I can't say I am still sane, (but then again I never was) but the point is, we made it through it and you will too!!!

If I find anything related to this I will let you know.

[Marion]

Here are some websites I found. They have some links to some forums.

http://www.suite101.com/welcome.cfm/elderly_caregiving

http://www.suite101.com/welcome.cfm/elderly_caregiving

[Granny]

Things to remember....

This too shall pass.

Take care of yourself, so you can take care of others.

Preserve your sense of humor at all costs.

Someday, you will be in their shoes.

Our prayers are with you, cause we're in the same shoes!

;)

[GrannyScraps]

Perhaps I should have read this before I responded to another thread elsewhere.... Granny has given you the best advice that I have ever heard..... becoming the parent to parents is one of the most difficult things you will ever have to do.... <been there>..... You and your wife will be in my thoughts and prayers!!!

[MaggieMae]

You are in such a difficult position, Steve. I had an aunt who called situations like this "having a mouthful of hot coffee" - no matter what choice you make it's going to be difficult.

My parents lived with us for awhile and I thought my husband was going to go absolutely nuts. It's really hard and I can honestly say it's something you will get through but you'll need to get out of there quite a bit. I hope you can find some websites with good advice. I think there's a book out, too, called the 48-hour day or something like that about caring for Alzheimer's patients.

Take care and keep strong!

[OnieRN]

Steve, as you know, I lived in PHX area a few years ago. My EX Boss with Banner Health was involved with a support group for family with Alzieheimers. I will check and see what information I can get for the group.

I believe that the others are giving you the best advise. You are in a difficult situation but so is your wife. I'm sure she will experience periods of feeling guilting because it is her parents. The both of you will need your down time away from the situation. I know your wife is also a nurse, as I am. Sometimes nurse's make the worst patients when it comes to advise. We tend to try to handle it all. Not a good situation. I'm postive that you will be able to get respid care or help. Do look for it and use it. Take advantage of all the available services to your family.

Our love and prayers are will you both during these times.

[mh51]

Steve... thinking about you & yours.

I agree whole-heartedly with Granny & Onie & you're in my prayers.

[*eng*]

Akzeimers and dementia are such cruel illnesses that can last for years. I have worked with people with these illnesses for the past 25 years and it is heartbreaking to see. I currently have 4 residents with various stages of the illness. One 98 year old lady was highly intelligent, she played bridge 4 times a week until 5 years ago and came 3rd in the county in a competition, no mean achievement. Since then her memory has deteriorated, we have had to disconnect her cooker for safety amongst other things. She forgets conversations and asks me the same thing several times a day. Her son died last year, he was 80 and naturally this affected her. Sometimes she thinks he's alive. The worst part is the wandering. I have another lady who can disappear and we are then searching . Usually she arrives back in a taxi oblivious of the panic she's caused. This is not a home but sheltered housing and an independent living environment where support services are provided. Another gets lost going from his flat to another part of the building and leaves his bags of rubbish outside other people's flats! Of course there is much more that I could write and I'm sure you could too. It is very demanding on those who care and the strain is unbelievable. It is harder than bringing up children. Temperaments vary too, being placid or very aggressive. I do hope you can cope Steve, I think it will depend on the fact as to whether they become aggressive or are manageable and whether they remain safe in the environment. I had one man who threw furniture and his wife was heartbroken as he had to be put into a home for everybody's safety. He had run his own business.
I don't know what support you can get where you are. I don't think enough is done anywhere but I expect varies everywhere. I hope they find someway soon of finding something to help if not cure this progressive illness, it's becoming more and more common. As much as I admire people who care for parents I also feel that people who find alternative arrangements are doing the right thing as I have seen marriages break up through the strain of doing so. I think those affected would have been mortified to know they had been the cause of this. I think in someways it is best they are oblivious to the difficulties they have created. Of course it reaches a stage often where they no longer know who you are which is heartbreaking. Elderly parents are role reversal, where we become the parents, but harder work because their brains are not growing like children's and are in decline. Children are developing skills and the elderly are losing them.
I do hope you are able to cope Steve, it is very hard. Remember that there are very extreme variations of the illness, some are manageable and others not so don't beat yourself up if you can't cope.
Good luck :)

[eye]

Now Steeve I have worn your shoes.My mother had this darn Alhemizer's for almost 20 years.Yep and we kept her at home.Though we had a family of 11 only 2 of us were there for each other.Less support sucks.I had just has a new born and had mum with us.Also had confused patients to deal with at work. I never got away from it.My husband and I went for seperate walks for the stress.People used to ask me how is your mother.I would reply my mother died along time ago for the person we were looking after was not her. The only way I had to deal with this.Sad to say the best time was when she was bed ridden and could not roam.Things were much safer not to have to worry if she would sneak out.These people can be so quiet.It is hard on a marriage as well as your children.Towards the last stage when she would forget to swallow and we would be lucky to get one can of ensure into her a day. I seen her hold a mouthful of ensure for 6 hours as she did not know what to do with it.Thank God for a missin tooth as I used a syringe to sneak it in and she would not open her mouth but that little secret door(no tooth) was a Gods send.I know just how you are feeling and how frustrasting it is. You are now their parent and the rolls have switched.You have all kinds of mixed feelings and that is so normal. So never feel guitly.This diease is very downgrading.It is hard on the families. One blessing is they are not aware and they are in their own little world---one without us.This diease is a horrible one.You see what was a strong healthy person grow backwards to a child.
The harest descion was to keep the promise that she will not suffer in the end to the rest of the family.Their is always one who has that load on them and one that all turn to.You got it ---me.I am the one who said enough is enough and it is time to let go.It was me who got in touch with the Doctor and it was me they let give all her medictions so that she would slip away in her sleep and that she did with in a few hours. Within three days she was gone but had a very peaceful death. I had a hard time to deal with it after as I thought perhaps she would have lived longer but in the end I gave her respect back.I always have a mamma cry once in awhile.She was a beautiful women.So Steeve if yah want to vent I am here for yah xo.

This is a long note eh but you helped me out by letting me vent.

Now for my next topic:WHAT I SEEN AFTER

When she passed over I was granted to see something.It shimmered like mercury and fluttered passed her window and landed on her pillow. The pillow dented in . At that moment mum left and so did the imprint.
Now I am gifted but this was special.It confussed me for2 years why me ,why was I granted to see this. I was confused but one day after 2 long yeras it popped into my head that I was granted to see this to pass on that yes their is a Heaven. I used what I seen in Pallative care and made my patients feel better. We are all human and we all wonder is their or isn`t their and I can now say yes their is a Heaven.I do not preach but just tell my story and after the patient dies I tell the family as they need to hear.So now I am passing it on to anyone who listens.Yep their certainly is a Heaven.Perhaps i was choosen as a link to tell as many that has their hearts open.Amen. :)

[srussell]

First, I just want to thank everyone so far for their kind words and recommendations. It's all been very helpful so far.

For those of you that may not know, my wife is a LPN nurse that has been involved with Hospice for over 15 years now, so she sees patients all the time that are in the "twilight" years stuggling. She loves her work and I really don't know how she does it. They've already got a slot saved for her in Heaven. (me, on the other hand, get the express elevator to the place where you toast marshmallows on a permanent basis :eek:)

We are taking everything day by day... We got my father-in-law an easel, canvas, paints & brushes (he loves to paint). We took the knobs off the stove because he almost burnt the house down on Thursday... we've now got him on decaf.

We're trying to get them involved in other activities, get them up and moving... They've been isolated for so long in another state, they are having problems socializing with other people.

My wife and I sat in the back yard on Saturday night, sipping wines coolers (lots) after we put them to bed and are coming up with a general game plan. It's tough, but we're working it out.

Thanks everyone and keep sending your suggestions!

Steve

[eye]

Oh I forgot shifting them around or taking something that they are used to gets them a little worse. Mum always put a grocery order in and when I tried to stop it she got worse so I let her continue to make her list. Though some of my family did not see that side and thought we were sponging.My main advise yah need some down time.You cannot continue without some escapes.I never put my mother in a nursing home but if I had to do it all over again I may have changed my mind and placed her in one. It was a long 20 years for me.But somehow we feel we must look after them and must is a long road with many holes and curves.My heart goes out to you.

[Smile]

Dear Caregiver:
This situation has nothing to do with being a nurse,doctor or any other profession. It is all about family and heartache. You can work in a nursing home, hospital etc. and deal with these kind of patients all your life, but when it comes down to your own flesh and blood common sence goes out the window and guilt takes over. I wish you and your family all the luck in the world but take it from me, how ever it turns out, you gave it your best try from the heart and that if your parants or hers, were able to really understand. they would love you for trying. Usually in the end it comes down to safty, which is 24 hour care, which is a nursing home type of program.Within the last three years we have been through it with both my mom and mother-in-law and I still cry over it but in the end we did the safe thing. The most important thing if it comes down to a nursing home,be there. Go at least every second day or at least once a week. Make you and your family part of this new home for them and it will be a smooth transication in the end.........good luck.....xoxo....Lois

[wolvsie35]

Steve buddy 'ol pal <wink> I have been so wrapped up in my situation that I must have missed this thread...My heart goes out to you...I know it isn't easy...I had to take care of my dad for almost a year...He was so sick with cancer...I know your situation isn't the same since you are not watching them die like I had too, but it is all the same when it comes to taking care of your parents, whether they are in laws or not..and it is never easy...Game plan is good, roasting marshmellows....isn't..lol..You are never going to be in the 'warm' place....You are WAY too nice and don't give yourself enough credit...<wink> For all of you that don't know, he has helped me through so much...and I can't thank him enough, so don't listen to him...
You keep the faith, and go with the flow...Watch over them and 'child proof' the house...I know you have no kids...But think of them as 3 year olds, and what they would get into if they were one...<wink> Always, find 'alone time' for the both of you whenever it is safe to do...Be patient, and if you need to scream, don't do it in front of them...take a walk...or call me I guess...lol...You have my number, call me if you need a friend to talk too..

[makeyesup]

Steve, all I can offer is my prayers for you and the entire family. You are fortunate that you and your wife have each other as the road is going to be very rocky and I'm sure you can hang on to each other. Have seen some good advise here and I'm sure much of it will come in handy. The best advise is to go one day at a time and let God lead the way.

[mswizard]

hmmmm..I guess I am the odd man out here. When my ex-Father-in-law started losing his mind (About 2 years before he passed) I would "Babysit" him while Oma went to the store or hair dresser, ran errands, whatever. As time went on, Opa started getting worse and worse, he started having violent nightmares again and even started becoming violent while awake. Once he tried to stab Oma with a fire poker all the while calling her some German name I can't remember today. Anyway after about a year he slipped into his own world (which I finally figured out was a nightmare he was reliving over and over again) I was the only person he remembered (I still don't know why) His world brought him back to Germany during his war years. I know this may seem wrong to some but I loved this man like he was my own dad, I joined him there in his little world and became his comrade. Each and everyday and alot of 3 am phone calls, I walked where he walked. I saw what he saw. He wasn't with us anymore, he was THERE in Germany fighting for freedom, for his very life. He stopped trying to kill Oma in her sleep (Because he truly believed she was someone in the SS) Oh the missions that man had us on....The day Opa died, he called me up and the only thing he said to me was " Do you remember our mission? Put the plan into action. Today is the day we get the bastard" 4 hours later he was gone. He died with a smile on his face. I truly believe that in the end, in his own little world, he succeeded in his mission where he had failed in life.
Books and even other people can't tell you how to take care of your parents now Steve, only YOU and your Wife will know, in your hearts, what is best.

[eye]

hmmmm..I guess I am the odd man out here. When my ex-Father-in-law started losing his mind (About 2 years before he passed) I would "Babysit" him while Oma went to the store or hair dresser, ran errands, whatever. As time went on, Opa started getting worse and worse, he started having violent nightmares again and even started becoming violent while awake. Once he tried to stab Oma with a fire poker all the while calling her some German name I can't remember today. Anyway after about a year he slipped into his own world (which I finally figured out was a nightmare he was reliving over and over again) I was the only person he remembered (I still don't know why) His world brought him back to Germany during his war years. I know this may seem wrong to some but I loved this man like he was my own dad, I joined him there in his little world and became his comrade. Each and everyday and alot of 3 am phone calls, I walked where he walked. I saw what he saw. He wasn't with us anymore, he was THERE in Germany fighting for freedom, for his very life. He stopped trying to kill Oma in her sleep (Because he truly believed she was someone in the SS) Oh the missions that man had us on....The day Opa died, he called me up and the only thing he said to me was " Do you remember our mission? Put the plan into action. Today is the day we get the bastard" 4 hours later he was gone. He died with a smile on his face. I truly believe that in the end, in his own little world, he succeeded in his mission where he had failed in life.
Books and even other people can't tell you how to take care of your parents now Steve, only YOU and your Wife will know, in your hearts, what is best.



You are a very interesting person and that is what makes you shine from others. xo

[jazzieal]

I dont have any advice to offer..I've never had to deal with anything this major....just know my thoughts and prayers will be with you and your wife..

[pkdoll]

Steve- I have never had to deal with anything of this magnitude, and I feel for you. This is never easy on anyone. Just know that you are in my thoughts and prayers.