Am I selfish?

[denmob]

I feel angry,confused and bitter. How do you all keep going? It just never stops. Friends,family etc all say I should get help but I can't have strangers washing, dressing medicating,chivvying him along,he would never forgive me. It's been 8 years and I feel tired. Has anyone any ideas?

[peterjones]

dear denmob i truly think you need a break because soon you will break down and that will be no good for your husband or yourself \\ looking at it sensibly im sure your husband would not mind if you had a few days off every now and again to charge your batteries im sure you must realise that you cannot be with him all the time its getting you down no matter how much you love him or do not want other people coming in sooner or later something will have to give\\ please do not make yourself ill over this i have psp and i understand that its important fpr the carer to have some time to themselves\\\\ i have had this since 2004 fortunately i think i have the slow progressive\\\\ talk it over with your husband im sure he will understand all the best take care peter jones queensland australia

[riosenior]

Dear denmob,

peterjones is absolutely right. Caring for somebody with PSP can be a very demanding role both physically and mentally. When my wife was in the early stages I was convinced I could care for her myself -- how wrong I was . As the illness progressed I was persuaded by family etc that I should get help and eventually arranged carers for 1/2 an hour each morning. It felt strange to start with but over the next 7 years eventually grew to 80 + hours per week.

We were extremely lucky to get excellent carers who almost became part of the family and I am convinced that without their help I would not have coped.I know of many other carers who have been through the same experience. The fact that you posted your message on this site tells me that you need help and soon.

An old friend of mine of mine used to say to me "remember you do not wear your pants on the outside of your trousers like superman". To care for your husband in "sickness and in health" doesnt mean you have to do it alone .

Good luck

[peterjones]

WHAT I WANTED TO SAY WAS THAT YOU ARE NOT BEING SELFISH JUST BEING HUMAN I HOPE YOUR HUSBAND WILL REALISE THE SITUATION THAT YOU ARE IN PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER

[jillannf6]

hi

u r certainly NOT beign selfish

i have PSP - The slow type i think like pete rjones but i have a carer coming in (from whne i got the diagnosis)an dyou certianly needtime off for yourself and hour husband

you will worry about him btu he will eb ok if u like rio senior says get some good carers comgin in who will be like friends and family

lol Jill

Hug and xxxx

[SuzieQ]

Please, please, please ask for some help. As the others have commented, you will be no good to your dear hubby if you get ill. I thought I could do it myself but was getting so tired and almost resentful and after listening to family and friends I had to concede that we needed help. Having Carers to shower him and get him ready for the day was the first step, but now his condition has progressed we have Carers to get him ready for bed too. I also get 4 hours twice a week when someone sits with him when I can have some "me" time. It didn't come easy in the beginning, but looking back, I now realise we could not have carried on as we were.

I hope this helps to persuade you and your precious hubby to ask for help. There is a limit to how much we can do and nobody could ver accuse you of being at all selfish.

Take care and God Bless ............ SuzieQ xxxxxxx

[kay1]

Many of this group "keep going" because we KNOW that we need help, certainly not an easy decision for any of us to make, but for the sake of our partners we owe it to them to provide the best care we can and if the best care means asking for help so be it. You own health is important to your husband and the rest of your family. Carers are people that can become another friendly face for you and your husband to see, and providing they are aware of the PSP problems, may allow you to have a few more quality hours with your husband.

[mummybear]

Dear Denmob, Would your Husband ever forgive himself if you dropped Dead? Get help now, contact your GP or Parkinson nurse and tell them you need help now, they will help arrange home help and respite for you, Easier said than done you think, well to be honest all us carers felt the same letting strangers in our home to help a little with the cleaning, having carers in to bath our partners and the hardest of all arranging respite, myself and a Parkinson nurse had to talk my hubby into taking respite, it was for 3 nights the first time and i worried myself sick, when i picked him up he said it was ok but to get him to agree it was (are you sick of me already ect ect) i told him if i got sick he would be there full time and i needed a brake, i called him on the phone once a day to check he was ok and he was, months later i had 5 days and we did the same thing. I'm now due another 5 days and he has changed his mind but i have put my foot down and said i wont be like his mum looking after his dad and end up having a heart attack and his dad ended up passing in emergency care. Take him to have a look at respite places if you want. and i myself have cared for sick people and believe me they don't care what you look like naked, and most are very competent and will handle your husband easily and make themselves part of the family. I know i need respite when i start to bite at the least thing or a depressive sense of why bother looking after myself I'll probably be dead before him lurks in my mind. As they say just do it!!! your the person in control now.

[hazelb]

Hi....please get help!!!!! I can tell from your post that you need it & need it now. I too thought I could do it alone but eventually we got a carer for 1hr in the morning to get Frank up showered & dressed. This gave me time to shower & dress without worry. After a few months I extended the carers to 11/2 hrs to include breakfast. It took a long time to adjust but I know Frank realised it was necessary. For the month before he passed away, the carers also came to get him into bed & settled for the night. You soon get into a different routine & wonder how you coped before. You are definitely not being selfish.

Take care & try to keep smiling. Love Hazel B xx

[Hidden]

Everyone is right you need to start getting someone iin for a short time every day and you will both adjust. Try Crossroads if you are able to. They can come in and just sit with your relative while you do something else. Mum found it a godsend with my dad and I had to get carers myself when Mums PSP progressed as I was exhausted and actually with hindsight was on the verge of a breakdown. You are not selfish!

[denmob]

Thank you everyone. I know in my head you are all absolutely right and I do need to get some time to myself. Thinking about your replies there is someone who would come in for a couple of hours twice a week. That might be an easy way into leaving my husband for a short time. I think I knew I couldn't keep this up indefinitely but it had become difficult to think rationally. Thank you all again. Your kind advice has really helped me.

[peterjones]

now your talking denmob its good to hear you say that take care chin up best foor forward good luck its all good from here on peter jones queensland australia

[denmob in reply to peterjones]

Thank you peterjones. Sometimes I can't see the wood for the trees!!!!

[judy1962]

Please sweetie get help. If you get help you can stop being the

caregiver for a moment and become a wife again. My husband

has gone but the help that we had allowed me to get rest and to

love and cuddle my husband like I wanted to do. Dave never minded

The wonderful women that we had to help us. He knew that I was tired

He also loved getting me back as his wife. Please take care of

Yourself and get some help today!

Love and hugs

Judy

[denmob]

Thank you Judy. I think you have made me realise that it's being a wife I miss so much. There never seemed to be a time when we could just be ourselves, even if it was just for 5 minutes. I have got a friend who will come in tues and weds mornings to sit with my husband for a few hours. Once we both get used to it I think I will be able to think more sensibly. Everyone who commented on the site has helped me see that things can't continue the way they have been doing. I will need to start thinking about the future and how we can make the best of it and not think about what might have been.

[ddspan]

Oh my goodness you are not being selfish - you are just being human. Caring for someone with this illness is physically and emotionally draining. I know that I often get very angry at what this disease has done to my Dad (who suffers from PSP) and the rest of the family, especially my 85 year old Mom who is his primary caretaker. You need a break. You need to take time to do something nice for yourself. Believe me no one wants to put their loved one in a nursing facility or have strangers doing things for them. However, my family has learned that those strangers become extended family.

Mom was so worn down and angry and Dad could no longer walk, talk or see so my brother, sister and I took it upon ourselves to look into nursing facilities and then when Mom was at her breaking point physically and emotionally we approached her with the idea. We found a wonderful facility close by and now Mom goes every day and Dad is happier because he knew taking care of him was killing my Mom. Mom now looks like a different person no more dark circles under her eyes, no more back and arm pain from moving Dad I do believe that she would have lost her mind had she not been able to put Dad in a facility.

Yes its the hardest thing that we as a family had to -- it broke our hearts. It's been 6 months now and we know Dad sometimes wishes he was home but he loves the nursing home and his caregiver. We always ask him to rate the Home and he says 10 -- his is one of the favorite patients because he has become so childlike and sweet.

I know I've rambled but I beg you -- get some help or you will lose you mind.

Hugs

DeeDee

[denmob in reply to ddspan]

Thank You Dee Dee. Your advice is good. This morning I went to the gym! A friend stayed with my husband. What a great morning. I came back feeling more relaxed and motivated. So yes, everyone was right. I did need to get out. I feel much better and able to cope. This site is a godsend.

[dllera]

I am sure that I am echoing all of the above comments but as a carer, you must take of you too. The worst shape you are in - the level of care that you can give will go down as well. You may want to consider getting help to come in. My dad had a hard time at first with having carers. One thing we required our carers to do -was to wear "scrubs" as a uniform to work in our home - no street clothes. It keeps a professional line and dad was more open to someone who was dressed that way helping him. He had great personal relationships with these people but again - there is was still a professional line.

Good luck to you!

Danielle

[jimandsharynp]

This disease takes its toll on us all. After a bad day I resolve to not let PSP get the better of me. I resolve to go on in spite of issues. This sometimes comes after a good cry. Do what you can but don't refuse help at risk to you health.

Jimbo

[denmob]

Thank you Danielle and Jimbo. Things have been much better today, I took some time off and had a good cry and a swim! I think the break did my husband good as well.

[erin]

As well as my husband, aged 52, having PSP, initially diagnosed 3 years ago as parkinsons, then this jan as psp, I am also a support worker, or carer, for people with learning disabiliities and physical disabilities.

Can I just reassure you that using professional care is not being selfish, far from it. We are compassionate and very well aware of 'person centred' care. We are very aware of respecting a persons dignity.

I know there is good and bad in every area but I work with some great people and won't hesitate to get help when the sad time comes that we need it.

One hint, do a little 'one page profile' with your husband's likes and dislikes eg radio on or off, lots of chat or quietly working away, etc. also make a little album of photos and notes of what he used to do and enjoy, just to remind everyone that he is still that person in there.

I hpe this reassures you a bit,

[denmob]

Thank you, your comments are reassuring. I guess I was tired and that's when you begin to panic. I know when the time comes the local care services will be there to help. Thank you again for your comments.

[jac001]

Direct payments are a blessing, You find the person and emply them but the gov pay. Push your SW to see what they can offer. It never seems to get an easier every day PSP throws something more at you. Just rem your not on your own.

[revmmh]

My mom is a born caregiver. Many of my memories are of her caring for someone else - family, friends, strangers. Now because of this horrible disease, she has to be on the receiving end. We have just had to get some home nursing for her because of a PSP related accident. To our great surprise, instead of a steady stream of strangers parading through the house like a shift change at the hospital, she has 2 wonderfully caring women assigned to her. They were "strangers" for about 15 minutes! Now they are a part of my parents' home and our family.

Disclaimer: I am a pastor. I am not trying to preach here but if you want to you can look up the verse Hebrews 13:2 That has been our experience and if you decide to get a little more help - settle for nothing less.

blessings!