How being a caregiver affects you and and your emotions

.........Family members may experience a host of emotions when having to deal with those they love with this Horrid Disease
Sad
Anger
Alone
Discouraged
Frustrated ...sometimes tired and depressed
In the face of the reality of a chronic illness .emotional distress IS appropriate and understandable ,sometimes family members find themselves overwhelmed by their feelings
As we all know Human feelings are complex and will no doubt vary from person to person

Sometimes many will be ridden with guilt thinking their feelings are wrong or unacceptable that they should have different feelings. Most feel alone with their fellings I know I do unless I am able to come here and share and thats what I do ........

The love they feel will or may turn into a " dislike " or a feeling of a heavy burden .........IT IS NATURAL to feel this way IMO

and also worried about how OTHERS may view them and there caregiving ........

Please keep in mind you are HUMAN you will have mixed emotions with some of this and it is " OKAY"

If you feel frustrated walk away for a few minutes and think of Happier times and remember they have only you now and that no doubt they would do same for you

WHY should we not be there for them

Same as spouses
**There are more aspects to this post but I would like to see what the response is first I am doing this as a retired Nurse and as a caretaker as well **
Please do not hesitate to add your input positive or negative
.......I mean NO disrespect I am trying to let you know it is okay to have these feelings,I know I have ............
MY opinion only
God Bless the Caregiver........
Luvs
LYN

Depression is the feelings of sadness and discouragement
Often very hard to distinguish between depression and anger ,depression and grief,depression and worry ......

Often most family members caring for the loved one may feel sad,depressed,discouraged or low day after day week after week ...........

Sometimes the depressed caretaker can become apathetic and or listless.......they also may feel anxious, nervous, and or irritable

The experience of being depressed is very painful in itself and that is something that IF it happening to you needs to be dealt with ........

Support groups or online support such as here does help IMO and sometimes couselling is needed but it wont help all of these feelings 'Just go away"

I find that it helps to share experiences and emotions with other families going thru the same things I may be going thru

Having a " buddy " system in place is great too for me

Alot of the times most family will not want to help out or deal with the loved one as they CANNOT accet what is happening NOT because they dont love them it is just to hard to see and understand .........

Having people to talk to eases some of the feelings we may have

I dont get angry but I do get depressed as I watch Dad go down the path to passing each day and I know it wont be long

I get sad as well as I know even though he doesnt really understand everything he does UNDERSTAND mom is gone and he wants to be with her........

There are many caregivers out there that wont feel most of these emotions due to their love and devotion to the one they care for but the sadness I am sure hits all and deression I would think gets many as well

**Grief for Mom is still quite raw for me I have only lost her almost a year now and I looked after her forr many till she went ......I dont think I have really and truly accepted she isnt just "down the street" and I will watch the house just to see hoping it was a a real bad dream and she will come down that driveway .......

These are only my personal opinions NOT ALL ppl feel this way:: as I did say but I do know if I gave self honesty check daily the sadness and depression would be ticked as well as anger

I sometimes get angry at My God as I see Him for whatever reason sometimes I have no idea why I am mad at Him I just am,other times it is because I see dad and I saw what this DD did to a vibrant beautiful woman.......I despise this Disease I honestly do

This is why I do love Healing Well and the ppl on this forum as I am able to bare it all and they know from where I come

As I said not all will have these feelings and I am not trying to portray the caregivers ( me as well ) as horrid angry frustrated ppl

** I am only opening up the topics for discussion IF someone needs to talk or to let them know it is OKAY to sometimes feel the way I (we) do or may do

It is a hard day to day job we do 24/7 and it will wear you down but keep a bit of me time to the side if only 10 minutes ya know

** keep self healthy and fit and know you are doing the best job ever in caring and loving that person ......feel free to add anything to this thats what this is about sharing our emotions and our days so......

You are all special people that take the task at hand and work thru it daily hourly .........

God Bless The Caregiver.........and Their Loved Ones........

Greiving....While Still With Us........Normal ........




I know that I have gone thru 2 " suddendeaths" in my life pple that were so close and I loved so deeply that was very difficult to deal with and still is



When you are the one seeing your loved one literally going in front of you eyes maybe on a weekly or shorter time frame it is Hades it really is

I saw mom go from being out in her gardens and going with me for "Just ride Lyn just ride" in the car no destination she just loved the car and being in the outdoors to a woman who hid the fact from dad and all siblings she was sick and wetting self and the as time came on the delusions and the feces soaked pants till I got there or Cait /she only trusted us and was ashamed I know

I got her depends and would take her up and have a wonderful tubby for her waiting where we talked about all

We had so many good /great talks up in the bathroom just her and i and those I cherish

I knew it wasnt gonna last and I also knew the other kids DID not want to ACCEPT the fact the MOm was not perfect now she had problems so they stayed away

Me I stayed with her and I grew as a woman by doing this and as a mother

I knew and found out more about here that I have in my heart and I know why she did the things she did in life why she always depended on me all of it

I made a new memory everyday wheth it was having to cut her pubic hair right close and shave there as well we constantly were laughing that day I had to do that she called me SHAKY,afraid I was gonna snip her ..you know lol.......we could not stop laughing about it for days

I said MOM this is not easy ya know lol but we had a memory a funny albeit out of the ordinary memory BUT one just the same

THen in the flash of a minute she would be staring off to a place I was not privy too I could not get in nor would I ask her about it it was her "Place"

WE started getting all the paper work and all done and she was owed alot of money from family (siblings) and it was all written down and in lucid times she had me take her to the notary and I have also a copy

Then dad started showing small signs and I thought my God WHY

Leaving stove on ligths on just the normal thigs I alwasy was taught to look for when assessing AD peeps

Agitation hit him and I believe he knew about mom completely

Anyways I had watched her go from about 105 lbs( small and small boned lady) to 65 at death this is not because she didnt eat or have the food avilable she wanted to go she having been a Geriatriv Nurse all her Career did not want to be all balled up and in fetal position losing any aspects of communication totally

She was tired of the dirtying self and not remembering putting ON a face not hers ya know

She also knew I would and never did take any renumeration for any of what I nor Cait did NOT RIGHT imho for me

She told me she was tired and for me to take some time that my sister was coming for this weekend I said MOm I still have to come down and do the baths ands stuff ....

I should have known Honest to God I should have known she said no it will be okay I will get Telle or her to do it so that your sores will clear up and you rest for the weekend and so I did but I find out she was sent home by my doc with A toch of pneumonia on the Friday ( no one told me this my doc did ) and was in hospital on Saturday night because my sister with her infinite wisdom DECIDED to pull 40 yr old wall paper and Paint the kitchen with Mom laying on couch

Yes they tell me they had fans and ya da ya da .............

Mom was never to come back home again

I saw her Sunday just before the alrams went off like crazy said I love you mom and God dont dont leave me yet please............She was intubated and the airlifted to a Hospital in London

London Health Science Centre....we were all there this is when I learnt AGAIN from my doc that the paper and painting had been done ....................they knew not to tell me

Later that night sister calls and says mom is okay and resting so for me to rest I told her I had some Major things to talk about with her she justs stayed quiet

I hung up a knawing feeling kept coming and going

I must have finally fell asleep for at 6:05 am on Monday March 20th mom was GONE...........

I was not with her and was not first they called I was last thinking i would flip out

I have more class than that

NOW I am still waiting for her ashes and YES this time I will flip it has been about a yr and there is NO reason they are not here

I have been wallowing in grieif being helped by my HW friends this past yr BUT I know the time is coming

I have dad in Hospital worried he is gonna go thats why I am constantly there I WILL not let him die alone he told me he wants to be with mom........

Broken Hearts are a big Death Cause in the world today

Sorry for ranting I had to get it out

Thanks to those that have read

LUVS

LYN........

PLEASE......Make memories cherish every second possible for there will be a time when memories is all you have,I am glad she is out of pain and with her Maker but darn I miss her more each day,Never take for granted what can be taken in a minute



Please share here if you would like

lYN

Am going to save this post on this topic as I have my plate right full with ANOTHER death a friend of Howies for 20 yrs found in his bed died from anuerism at 38 left behind new wife and 2 small babes
I am literally in a anxiety mode and emotions are way outta whack
Will try to do tomorrow .......sorry
LYN

Isolation...........Lonliness

Some ppl that are the sole caregivers of their loved one albeit wife, husband, mother, or father will at one point feel isolated and lonely.

The Isolation will or can stem from being the only one caring for loved one ..friends disappear at most times and so do alot of family members.

You are looking after your loved one 24/7 and are consumed with thier aspect of care in EVERY way ......it can be at times very lonely.

Try to involve your family members tell them that:

" Grandma or Grandpa or Mom / Dad have a disease they cannot help and they still need the love from ALL that loved them prior to this illness "

Most times in my opinion this stems from Ignorance of Alzheimers have them read up if they will and find out what their loved one is going thru

You as the sole Caregiver Have to have some down time and not just when they are sleeping you are kinda like a " soldier on watch" even when they seem to be sleeping peacefully most times you do not ,waiting for that lil noise or movement letting you know they are awake and need attention.

Do not feel guilty if you have a person from Homecare come in so you can go out and have a couple of hours to self you really need to Re group and get your self some time where you are able to talk to others and see what is going on in our world
Yes it is the greatest thing you can do Caring for those you LOVE but you do need a break once in awhile.

A bit of the time I feel the total isolation when no one comes about for Dad and I nor did they for Mom and us.

Tell your daughters /sons /grandchildren it is okay she / he is still in there and needs all the love and understanding ...SO DO YOU.

Seniors are the Backbone of our SOCIETY and should be treated as the great ppl they are and given plenty of credit for what they have given to the world.
If not for them where would we be.

I really use to get upset over no one coming round but now I see it like this I cannot force them and perhaps they dont have that " connection" I do or ability I was given by HIM to do what I do.

not everyone is cut out to do this.

DO NOT isolate yourself as it will be all the harder to get back into the swing of the outside world and whatnot when the time comes for them to be called home

If you are depressed lonely and NEED to cry for what could have been and the what ifs ......DO SO there is no shame in emotions and TEARS.

When Mom passed I went into a deep depression and it scared me I am coming out of this by having mentors like Grampa Padraig and others to help me thru
WE ALL NEED A BIT OF HELP.....no matter how strong we are or put forward we are we do need the help .....do not be ashamed to ask for it .nor let stubborness get in the way.

..This forum and the ppl are fantastic and Padraigs story shows what day to day caring is all about ....
Take the time to read it if you choose I am sure it will hit home with many things he has posted and gone thru

I wish all of you only love ,happiness and peace of mind that YES you are doing the right thing by being there for those that need us/you.

BUt I do implore all to get some " time out "
Do not be isolated and lonely ........thats not what your loved ones would want for you.
I think I am pretty safe in saying this.

" God Bless The Caregivers "
LYN

Decided since we have a few new members now that are dealing with their loved ones living with them I would post some of what may be feeling or going thru and what you may expect or what you can do to help or find another solution...........

If Your Parent Lives With You and has Alzheimers

Sometimes there is your parent living with you and if you are married you may go thru many hurdles because of it ...the sexual aspect of your marriage can be badly disrupted and this in turn will and can cause other problems in your relationship

You may be too tired to make love or you may have stopped going out together on " dates" in the evenings so you end up losing the Romance that may have kindled the " lovemaking" in the firstplace
Your confused parent may be a wanderer and be up and about banging or getting in to things ......could be irritable ....shouting and or aggressive and even knocking on your BD door constantly
Relationships are hard enough sometimes but with the added stressors it can be very difficult to keep your marriage intact
The relationship should be enriched by all the parts of a open and happy one

This includes talking ......facing troubles and financial difficulties together as well as having the intimacy that is so needed at times
Strong relationships can and will survive if you put aside some things for a bit but not for too long
It is imperative that you find the time and energy for one another ....get someone you trust to come in and go out even if its just to have a cup of coffee or catch a movie .......
Make yourself find different ways and avenues to create the romance and as well as the privacy you need so dearly to keep your mariage happy and healthy.........
I was extremely lucky with my hubby he was always there for me and for Mom and we did argue at times which is natural IMHO about losing alot of time together but he also knew just how close I was to Mom and now I am doing the same for DAD but unfortunately Howie and I have split and I and Cait now share the caregiving for Dad........
Take care of you and your spouse as well as your parent and remember that your spouses are dealing with most of what you deal with as well ........
God Bless the Caregiver

o me I find it very sad if you have a loved one at home and they are able to walk or have a wheelchair ........that they might not get outside and see other ppl and the beauty in the world
Yes they are almost non aware of many things BUT they do need fresh air they need to be around other ppl and they need to be accepted by others in Community ......



AD is NOT contagious as we all know so if you are able to take your loved one out even to shop I would really suggesst you try it even if its only once to see how it goes .........

They no doubt would sleep better and perhaps their appetite would be better as well



They are still able to see the wonders in the world the changes in the world and all of the different things going on

Never be embarrassed for doing all of these things for those you care for ....your loved ones

I take Dad to Market and I take him around town all the time he loves it especailly yard sales and seeing ppl he remebers a few ....pretends he knows others but I know different as do they BUT they enjoy seeing him as well ..........

Remember this is my opinion not something that I am trying to throw down anyones throat ..

I just think if possible get them out .........

Being the sole Caregiver IS a very hard task and with it comes many emotions as we have read ......
You do need to look after yourself just as well or you wont be able to do what is needed for them you love
In my opinion
Yes the rewards are great for sure
Please take care of you too

Taking care of your health physically and mentally is a must in order to help others properly imho
just my opinion
luvs lyn

HI and welcome
I too worked in the field actually owned my own retirement home and most of my family worked there as well as hubby at the time
Dad cooked in kitchen Mom was Office and assisstant Admin for me I was the owner and Admin
BUT I changed and did everything that I expected the staff to do as well
IN our staff room I had put up a huge piece of Bristol board that read
1...All residents to be treated with respect and dignity
2...Remember that EMPATHY is NEEDED and Given FREELY
3...Love each one differently just as each one is different
4..Family is what this HOME is all about
I was never so devasted when my health went right down and Mom got Alzheimers at the time too so I had to sell home
I can still remember ppls names ...birthdays ,likes and dislikes ect
I honestly wish I was still able to be doing this it really is hard to not do what you love best
THat is why I am on HW so much trying to reach out and give back some of all I have been given over the yrs ......
YOUR post is right on you are definitely one that is a true loving person with them at heart
I thank you for that
Please do stay with us
I am sure you have much input and info to help as well
Glad to have you aboard ........and in "our lil family".
LYN

On the other hand, it's rerwarding to be a caregiver too. It gives you fulfillment and happiness. It gives you inner joy if you share your feelings with them, make life worthwile, and maintain their independence in their small ways. This feeling of joy is priceless. And the reward that God is giving me, I'm still able and independent for 16 years that I'm sick of Parkinson"s Disease.

Thanks for the opportunity of sharing.

Many outsiders think that because "our loved ones" have that BLANK look that they are not there and do not need any kind of COMMUNICATION..........
IMHO.....that is totallly NOT so ..........
They need touch they need to be talked too and they also need to feel the person's love

AS well never think that THEY do not feel the vibes coming from you as they really do and they take it all in causing more confusion and anxiety.....IMHO
Give them the love caring and unending devotion they REALLY need and soooo deserve
You will be the Richer for it .................Just my half penny worth today
Luvs
God Bless
LYN

HI there and WELCOME
I too have worked in NH's and I owned a Retirement home that I ran with almost all my family members.....
Mom was an RN.....My brother a RN specializing in Psychiatry .......Me in Geriatrics .....
My dad cooked in the Kitchen for the Residents and we all had a GREAT family atmosphere there AT ALL times
The residents were top prioity their well being,dignity and being treated as an adult not a child was inner most of importance to me
I also had a ZERO tolerance for any abuse verbal or physical .........
I actually had to FIRE my ex for drinking on nights while supposed to be looking after the residents
I did everything that I expected the Health Care Aides to do including changing and cleaning up after an accident soiling ........
I had to finally sell the place due to many health issues on my part and Moms......who passed away almost 2 yrs ago now ........
I looked after her all the time she was ill and declining friom this DD and I now look after my dad .......he is going fast ........BUT I am making many memories with him
I am sorry for the vent lol
Glad you have fouind us here and I DO hope that you will become an active part of this " Family"
I am positive you will fit right in and you will be an asset
** I did okay you on my Messenger**.......
Again STAY with us and get to know all the others as well
Add input and info where you feel it will benifit .......
God Bless............Glad to have you
LYN