Hi, my name is Norm I live in Punta Gorda Fl. I believe my wife is also in her final stages. I just gave her fourth Xanax to get her to fall asleep. Extreme anxiety. Lost 15 lbs in last 4 months. Living off ensure for food intake. Hospice is here once a week. Elaine is seventy years old. She was diagnosed in 2011. Has not aspirated yet but when she does hospice is going to put her on morphine per her wishes she has suffered enough her choice. Her regular doctor and her neurologist agreed also her priest Father Jerry. She is almost blind depends on me for everything. I get 20 hrs of help a week from Medicaid. I only got on Medicaid a year ago we went through our life savings. I also had to file chapter seven to pay off credit cards. Very sad how a long-term disease can ruin two lives no children and we just had our 50th wedding anniversary. Elaine's doctor said I should get some help or I may go before. It is very nasty disease. I did not want to scare anyone it is ugly.
God will help: Hi, my name is Norm I live in... - PSP Association
Welcome Norm! Am so pleased you have found this site!
Now you are not alone as there are many others here who understand your pain and loss.
Stay in touch. There are some who live nearby.
None of us who have been reading this site are unaware of what can potentially happen. I’m sorry to hear her end is near. Glad her wishes will be observed.
I wonder what the financial situation will be if I outlive Larry. I don’t come from a long lived family. Medical bankruptcy is not uncommon in the USA. There are about a million every year.
So sorry you had to join this site but welcome. I’ve gone through what you are going through but have come out the other side, my husband has now been at peace for 2 years. I stay on this site to see how my old friends here are getting on but thought I’d respond to you just to say you and your wife will be in my prayers. My prayer is that your wife doesn’t get aspirational pneumonia but leaves you peacefully as my husband left me. All nourishment was stopped at his request by communicating with hand signals and grunts for me to stop PEG feeding him and he refused to swallow Ensure or anything else. He drifted off after spending his last 11 days without pain or medication and able to squeeze the hands of the many friends and family who came to say goodbye. Morphine was here but he didn’t need it. I believe it was our faith and prayers from many that gave him such a peaceful end. During the 6 years since diagnosis he was never hospitalised, only had 1 UTI at the very beginning and no other infections. He had plenty of falls but no fractures. When someone said to him, “Why is this happening to such a lovely man as you”. His response was, “Why not me?”. He had a very strong faith.
So my prayer is that God will help you, as you titled your post, and as I know he helped my darling husband and is continuing to help me.
Sending you a big hug.
Welcome to the site. The thing to do now is keep your wife safe and comfortable as possible. I would ask Hospice if they can come in more then once per week. Try contacting you local Agency on Aging to see if they can find any type of solutions for help. I understand the financial burden and devastation you've gone through, if you haven't already I'd suggest contacting a lawyer who specializes in Elder Care.
Stay in contact. All of us have either been there as carers or are carers now. There are some amazing people who have this condition battling away and still members of the site.
It is indeed a cruel disease. You must take care of yourself you know? If anything happened to you what would happen to your wife? So rest. Indeed take time off. You need more help from the Hospice. Cry all over them if need be but make sure they know you are worn out? If you carry on people will let you do that with minimal help.
We will help you get through this. Some amazing people on here. We understand how you feel. We have people from all over the World but mainly the UK and USA I think.
I am so very sorry about your finances too. It is so cruel to do that when someone is near death? As if you don't have enough to cope with? We can't make that better but we can be the best friends you have ever had. We know how it is Norm.
Hugs to you.
I am so sorry.
Margarita, Los Angeles, CA, USA
Welcome this is a great site for comfort and support - lots of useful information from people who really understand the challenges of PSP either as carers, former carers or people with PSP.
It sounds as though you have had a really tough time - good that you finally have some care and support in place - take every bit of support on offer.
Hope to see you on this site again
Love Tippy. ( UK)
My heart goes out to you and your wife. We also live in Punta Gorda, Fl. My husband was diagnosed with PSP in 2011. This is a good site for support and answers. As her carer, you do need to also take care of yourself. I know from experience, that it is easier said than done. My thoughts and prayers are with you and your wife.
Welcome to the site Norm, you will be glad of the support offered on here. You are certainly going through a tough time and it seems very unfair that your finances have suffered so dramatically. I do hope that some care is put in place for Elaine so that you can switch off, not that you ever completely switch off, but it does help to have someone to take over for awhile and you are able to recharge your batteries. As you say, PSP is a very cruel disease for sufferer and carer, I hope that the end of her life is peaceful and painfree as it was for my husband, he welcomed death when the disease really tightened its grip.
Prayers for you, and for your wife, Norm. Has hospice given you the option of respite care? This would allow your wife to temporarily stay at a hospice center (I think they allow a week) while you rest and recharge. Ask them how this could be arranged so that you can get some much-needed rest.
So sad. It's a wicked illness. I know what you're going through x
I'm so sorry your wife, Elaine, has this awful illness as does my husband, Ed. They sound like they are in the same stage of PSP. We are in California. My husband has been in a care home for the past year because I could no longer care for him at home. We are fortunate to have long term care insurance which pays for most of it. We wouldn't have had LTC insurance if we hadn't watched a family member go through their life savings due to illness and were determined that wouldn't happen to us. It is sad that it happens so often in our country.
I hope that you can get more help than you currently have. Caregiving is exhausting and your health is important too. This site is a great place to get help as questions come up. I'm glad you found it and will use it as you need it. I'll hold you in my thoughts as we travel this road.
Hello and welcome Norm
It is a very hard journey and you're in a very painful time. Stay in touch and let us help keep you afloat. Every bit of love and care you give your dear wife now will live on to support you to, during the inevitable time of loss.
Hugs to you XXX
My thoughts and prayers for you and your wife.
Keep the faith,
God bless you Norm. My prayers are with you and those around you who can help. Love AliBee
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