Looking after a dying parent and feeling the guilt

[clive421]

I look after my dying father my mother who also has cancer and my brother who is in their care.

I have been doing all the running around hospital visits,shopping,getting meds,every chemo treatment every radio therapy treatment, my brother is blind and mentaly handicapped,they all live in the one house and are all house bound.

I have 2 other brothers who dont help.

I am 46 married for 26 years with 2 kids 17 and 23,I have now become mum and dads and my brothers carer,the thing is my mum is constantly on the phone sometimes for trivial things just after I arrive home today after being the grocers store for them ,it was to get back and put the lotto on, or get me an evening paper,after I have done a big shop for them and got them morning papers,take me here, or there, constantly shouting at me,I have allways been the caring one I have allways been the one to visit the sick and housebound but this as made me feel bitter and lost.

Mum wont listen and is constantly in denial about dad which is understandable she has now substituted me for my dad whith regards to runing arround for her.

I feel awful for moaning I have been there for them as there other sons havent done anything for help,I just feel lost,angry,and guilty for feeling this way.

We even all took my Dad on his last holiday to spain my 2 brothers just got drunk all the time I ended up looking after not only my parents but my 2 brothers and one of my brothers family.

I feel like I am ready to crack and I am now moaning all the time to my wife and kids ,even if someone reads this at least I got it all off my chest can anyone relate, I feel guilty and alone.

 

[pentecostbaby]

This is such a heavy burden to carry! I can’t imagine it. Even if you don’t feel it, you are an amazing person to do it.
This reminded me of the Gospel a few weeks ago: the one where a man asks his two sons to go work in his vineyard. One says yes, but doesn’t go. The other says no, and goes anyway. The second did his father’s will. Even if you’re feeling guilty, you’re doing what God asked you to - and this is an awesome (in the sense of enormous), important task.
I will keep you and your family in my prayers. I hope your burden is eased.

 

[KathyA]

My heart goes out to you. I understand how difficult this is. My mom passed away a year and a half ago. When she was first diagnosed with cancer, she had been taking care of my dad after he’d had a stroke. They were both extremely independent people and it was a tremendous strain on a not-so-great marriage to have Dad not being able to do the things he used to do and to have Mom trying to be a caregiver when she really wasn’t a very nurturing person to begin with. Anyway, when Mom started agressive cancer treatment, Dad voluntarily moved into a Veteran’s Home about 70 miles away. For several months, I didn’t know if I was coming or going. I have two older kids, 18 & 16 and a 3 1/2 year old. The older two were very helpful and understanding, but I felt a lot of guilt about the little guy missing his mommy. My only brother lives 200 miles away and, God bless him, he came home to help just about every weekend.

My relationship with my parents was rather strained over the years due to their alcoholism. I always struggled with the commandment “Honor your parents”. What I discovered through my mom’s illness and death was that God was giving me an opportunity to live that one out. It was difficult. I often didn’t want to give any more, but I did just because I knew that was what God was calling me to. In the end, after many hours of sitting with my mom being totally out of it, I stepped out of the room for a minute. When I came back in, she was totally awake and aware that I was there. I talked to her…told her that I loved her and tried to reassure her that everything would be okay. (She was unchurched, but recently baptised.) She looked terrified. Not a real peaceful memory for me to carry around, but one I treasure anyway. It was a great gift for me to be able to communicate with her that way just before she passed away.

My only advice is to try to put a smile on even when things are really wearing on you and be thankful that God loves you so much he is giving you a chance to serve in a very profound way.

Peace,
Kathy

 

[OutinChgoburbs]

Is there ANY organization that can help you ? Here in the US and Canada, there are hospice centers, Visting Nurses Association, county extension and health agencies. You might have to search the web…oh wait, I can do that. That’ll at least give you a start.

terminalillness.co.uk/arranging-for-help.html

http://www.cancerbackup.org.uk/Home

http://www.mariecurie.org.uk/

http://www.cancerindex.org/clink44k.htm

mencap.org.uk/

http://www.rescare.org.uk/

http://www.rnib.org.uk/xpedio/groups/public/documents/code/InternetHome.hcsp

http://www.tameside.gov.uk/mealsonwheels

That should give you a start. I Googled the words
UK, handicapped, hospice, assistance, registered charity, cancer, teminal illness, NHS. Don’t forget to also ask at your parish, your parents’ parish, the diocese, etc. Leave no stone unturned in your quest to line up assistance you can manage for your parents and brother.

You will probably need to screw up your courage and loudly ask your brothers for assistance, perhaps in front of the parish priest or other local professional. If they flat-out refuse, then maybe for now you are better off without them around you, period. Give the relationship a breather. I would not bring them on holiday ever again. You could also ask your 17 year old and your 23 year old for some assistance, esp. if they are still at home. It’s their grandfather, their grandmother, and their uncle.

You might want to start the process to see if you can find your disabled brother a good group home, or see what assistance you can get him during this transition. One of these agencies should be able to help you out with that.

A schedule is mandatory. Mum should know what day of the week you will do shopping, what day of the week you are avilable for doctor’s appointments (and you will make them so she can’t make them without consulting you), and what day cleaning will happen. That way, if she calls, you can say, “Mum, you know shopping day is ___________. I’ll be happy to do it then.”

If it was me- it has been in the past, and it very well might be again someday- I’d find a way to get it across to Mum without brow-beating her that I am in charge, and while I would be considerate, I would also make it clear a lack of cooperation would mean they seek outside assistance without me. I would then follow through. You are a human being and child of God, not a catch-all and workhorse that people can abuse, particularly family members.

And when you get some help lined up, you need to take a break. Plan on at least one day off a week, where you have time to do what makes you happy. Go to the library, do your nails, take a bubble bath, take a long walk, SLEEP LATE, munch snacks watching the Tube, etc. The kids and your DH are old enough to help with the cooking and the cleaning. They will not starve (trust me on this) if you don’t cook one day a week.

 

[Salonika]

clive421:

I feel like I am ready to crack and I am now moaning all the time to my wife and kids, even if someone reads this at least I got it all off my chest can anyone relate, I feel guilty and alone.

With all you have going on at the moment no wonder you feel the way you do, especially with some people not pulling their weight, putting unnecessary burdens on you and showing little realisation that you have needs and other responsbilities.

If you can’t get some of these people to pull their weight do what you can to get others involved. And make sure they know that you are finding what you have to do overwhelming - otherwise they may say things like “you seemed to be coping so well, we didn’t know you needed help”. If you do this calmly, on a day when you are coping, they won’t be able to dismiss your request as you having a bad day.

If this doesn’t work someone like your parish priest giving the same message may have more effect.

I hope for the sake of all involved, especially you and your wife, that your load is lightened. You are well beyond going the second mile!!!

 

[clive421]

Thank you so much for all of your kind words I went to bed last night in tears but today is a new day,Dad isnt fairing well and I have to take him to the hospital tomorrow,I have a feeling that he may be admitted,this may give me an opportunity to sit my mum down and discuss some sort of structure to the day.And getting them some professional help.

Mum is a cancer survivor but cant walk because of of her hips,my brother was in a car accident 22 years ago when he was in a car driven by my Brother who was drunk resulting in a catastrophic turn of events resulting him being blind and mentaly disabled,I had to pick up the pieces then 22 years ago.

I allways knew this day would come thanks for helping me,I even missed mass for a bit but I am going back to mass sunday to put all of this our lord,I know we all have our different crossed to bare but it makes the cross that little bit lighter just to talk about it.

 

[Lizziebel]

Praying for you and your family in this incredibly difficult time.

 

[SMHW]

My mother just started hospice care. We’re fortunate enough that Dad is healthy, my sister is a nurse who can handle some care at home, and that my parents can afford to have an aid in the home for several hours each week day. But even this is time consuming. I can barely imagine how it must be for you.

My prayers for you and your family.

You’ve gotten lots of good suggestions. My only remaining one would be to screen calls. (Do you have or can you get caller ID?) I wouldn’t answer the phone when your mother calls. Let her leave a message. If it’s truly an emergency you can call right back or alert the proper authorities.

Your mothers wants and your extended family’s needs are not unreasonable. But it is unreasonable that you should be the one to fulfill all these needs and wants. Your feelings are are all very normal. I don’t expect you can avoid the “guilty” feelings. But I will suggest that what you feel isn’t really guilt but rather sorrow and emotional exhaustion from being handed a responsibility that is bigger than you are designed to bear.

If your brothers are irresponsible then you will probably have to be the one to meet their needs by doing things yourself or delegating to a responsible organization. But perhaps in the case of newspapers, lotto, and such trivial matters you could delegate those tasks to your brothers. If they don’t perform them then you tell your mother to direct her complaints to them and just turn off your ears if she tries to complain to you.

 

[LSK]

Can you have a serious talk with your other siblings and tell them you need help?

I did, and was turned down…however, once I had specifically asked for help my brother could never EVER claim to have done anything other than say, “No”.

After our Dad died, my brother felt awful about the way he had behaved. His apology to me changed our relationship for the better and it has been getting better, bit by bit, ever since.

I guess St Augustine was right - from all evil comes great good!

 

[BamaRider]

I cared for my 80 something old mother the last year of her life. I did have help from my brother and sister, so my situation was different, though it was not easy. She was bedridden the last few months, and didn’t know much.

She suffered from dementia the last few years of her life. She was subject to do most anything, wonder off, call strangers etc. It wasn’t easy, but we took good care of her, we never thought about putting her in a home. She died peacefully in her own bed in the house she had lived in for 40 years.

At the time it was hard, but now I feel so good about myself. The bible says those that care for aged get special blessings, I believe that, because I now have a special peace. I was able to give back to her, what she had given me all those years ago.

No matter what your siblings do, keep doing what you are doing. Believe me it is not going unnoticed.