After resisting the offer of outside help I've finally admitted it would make things easier and from tomorrow someone will come in the mornings to get my husband out of bed, shower him and dress him. Once I agreed and the arrangements were made I felt so relieved. I can do it but sometimes I get impatient and a bit stressed. No way to start the day for either of us. Eddie is quite happy about it (he loves female attention anyway!) and so now we can both have a relaxed start to our day. Friends and family have been telling me for ages to get help but I felt a mixture of guilt because I can do it, a reluctance to have people in the house and a feeling that by asking for help I was tempting fate that he is getting worse, if that makes sense. I suppose by being realistic I can only be helping him. So if you're struggling like I did, just ask for help. You'll feel much better.
Accepting help.: After resisting the offer... - PSP Association
You are very wise to accept help Sheila. After all if you go down with exhaustion there will be two people needing help. Our advice is always to have a support team around you. People who you trust and who you can rely on who can help out when you need a break or to share the load. It not only benefits you as the carer in getting some rest but it also benefits the person who is being carer for because the carer has renewed patience and can spend the time normally spent in caring duties as a partner,wife and husband again. It is also good practice to have a contingency care plan which means there can be continuity of care should the carer themselves become ill.
well done for accepting some help with eddie you need to
take care of your self as well, just because you have got
outside help dosent mean you dont love him any more it
means you love him even more and you wont the best
possible care for him that you can possibly have, It just
means you can take a few minutes to your self and your
husband can enjoy all the femail attention i hope everything
turns out ok you take care,
My parents were reluctant to have someone in to help too for similar reasons to yours, I think. Certainly Mum was very adamant at one stage that she didn't want strangers looking after her. Carers started visiting after Mum broke her leg last year initially as part of a rehab package and it soon became evident how much of a boon it was. Dad uses the time the carers are there to take the dog for a walk and go and buy his paper so he gets a little time to himself at the beginning of the day.
Hi Sheila ,
you have done a very good things. We did the same for my father and you know it was better for both the people. As a father he didn't always want to be so dependent on me and this way he felt more relaxed, didn't feel he was a burden and was also more in control and felt a sense of freedom too.
And it also helped me to save on all the emotional energy to support him at an emotional level . Because the physical chores can drain you out and then you cant spend quality time with the person.
It will really improve the overall situation.
Hi Sheila...thanks so much for what you have said about feeling relieved. I've been struggling with my husband Frank for ages. We moved our bedroom downstairs a few days ago & foolishly I thought it would make things ok. It has to a certain extent but I'm still struggling. By the time I've got him up, showered ( only every other day for a shower cos I couldn't cope every day ), dressed & breakfasted, I'm a wreck. Today was especially bad & we were having a visit from the O T today. When I opened the door to her I just burst into tears. Fortunately Louise knows I'm not normally like that so she calmed me down then we all had a chat. The upshot of it all is that Frank has agreed to have a hospital bed & we are getting rid of toilet frame, perching stool & shower chair to try a Shower chair/ commode on wheels as the shower room is not very big. He has also agreed to have someone in to get him up, showered & dressed so she will refer us to Social Services for this as an urgent referral.
Like you I now feel a bit better that I have admitted I can't cope. I told Frank this morning that PSP has turned me into a horrible person who shouts & screams a lot. I was always the one in the family who helped everyone else but now I feel I can't even help myself.
So thanks again Sheila you made me realise what I had to do.
Take care & try to keep smiling ( I've always been good at giving advice not taking it !!!!!!)
Love Hazel B xx
Hi Hazel, I found your words echoing so many of my feelings. I have always been rubbish at asking for help and favours even from close friends and family. I like people to think I'm really tough(in everything) but this is so big I finally took everyone's advice. The biggest problem I find with Eddie as I said earlier is his inability to follow simple instructions. But worse was my reaction to that. Never the most patient of people I found myself shouting and swearing at him, not something that we have ever done in our 21 years together.. And when I apologised he was always so loving.Joining this forum has been invaluable and strangely has stopped me shouting at him. I still feel frustrated when he doesn't understand but I have found a new patience from reading everyone's comments.
We have the loo frame etc and a bed lever is helpful. All these aids and gadgets are reducing our chances of getting into '25 Beautiful Homes' by the day but hey if they make life easier who cares!!
By the way the very fact that you have shared your worries and guilt means you are anything but a horrible person. You are obviously a loving woman who is being sorely tried by this cruel condition.
One or two people have suggested that I shouldn't read everyone's comments because they will be upsetting. On the contrary, while I find some from sufferers further down the line than us a bit scary, I am finding huge moral support and comfort from sharing .
Your comments above could have been written by me. So glad you felt able to write them down. Your words have helped me to feel a little less guilty about the way I feel when things get tough.
i love your comment about the beautiful homes!
you have a great sense of humour and it will he so much easier with a carer to help
i too have a carer for an horu a day at present and she is great!
keep bloggig and get whatever halp you can practical or financial-,
peope do want to help i have found that
Thank you all for your comments, even though I don't blog that often I do read what is being written and take comfort from it. At times I am still in denial and think my husband will snap out of his current predicament. I know this will not happen and then try and treasure the moments when he is having a good hour/day.
On Monday he has his first physio appointment. Whilst we think we know what we would like help with, has anyone got any advice or guidance about what to expect from the physiotherapist?
i have psp and the physio recommmended exercises to keep me mobile]
Plus a couple of extra items 2 help with the shower which is a step in one ( a step so tha ti do not trip out of the shower)
a 3 wheel rollator frame for insiie and help towards purchasing a 4 wheel frame 4 outside as my balance is v poor
get whatever hlep you can financial or ;practical
Good for you Sheila! Now you can let someone else do the more stressful mundane tasks and you will feel much more refreshed to do the happy fun things with Eddie. I have had similar feelings as you have had regarding bringing someone into the house. I too felt that it was resigning myself to the fact that my husband is getting so much sicker, but the truth of the matter is that they are getting sicker as this is a progressive disease. Never the less a hard lump to swallow when you come to the realization and it really sinks in. I am in bed and I am watching my husband as he lies in his hospital bed as he moans continuously and chokes. I still try to convince myself that things will be okay and he is not that sick, but that is not realistic.
I have someone coming in twice a week now to help me for 2 hours. It has helped to let me reduce my stress. I would have someone more often and for more hours but the cost of care in the US is very expensive. Get good and rested and enjoy your time with Eddie.
Hi Judy. I read Lionel Shriver's So Much For That recently so understand the frightening limitations of US healthcare. Was your husband ever in the military or any organisation that might be able to offer help now? Are there any voluntary groups or church groups in your area who could give you some help in the house or the garden, shopping or just sitting with you to have a coffee and a chat?
I really hope things improve for you very soon.
Fortunately this disease is a slow one. I didn't know where to start. We live in a rural area and there isn't much assistance. (Just me) I have talked to a social worker and she was a wealth of information. It was still a big chore calling so many organizations. My first thoughts were to Keep Mike safe in his home. Think I have done that for now.
I always thought you had to be a 'baddie' to have a social worker until we were assigned ours who is great. And you're right, they are a mine of useful information and contacts. Hope you can get some more help.
Do not feel bad about asking for help. I am here in the US and the cost of home help is prohibitive! I just hope and pray that the state does not cut off our insurance (which does not even cover all that we need).
I really feel for you. Did you read my reply to judy1962? Are there no voluntary groups who could give you a hand? We are very lucky to have the National Health Service here. And by chance the county we live in here in Scotland has a very good reputation for healthcare services. Probably the only things I will be asked to pay for will be respite care and daycare food and drinks. Home carers are free because Eddie is over 65). Home aids/ physio/ medication are free. I could probably have help with housework but I already have a cleaner once every two weeks.
Take care, Brian. SheilaN
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