Hi all, it has been a tough week. The atrophy/neuropathy that is attacking Jim has now moved into his upper body. He is having difficulty getting a good deep breath, he is slurring his words, and almost cannot assist in transfers. His short term memory is failing quickly. He is much more confused and it is difficult to explain to him what is going on. These are all late FTD/MNV symptoms. I am camping out here for the next couple days, in case things continue to change quickly. I just don't feel secure enough to go home. I am hoping Hospice can get here today, if not they will be here tomorrow for sure. His chest x-ray came back negative and he has been started on Tramadol for his increasing muscle/nerve pain. It is so tough being the only one who understands his symptoms. I'm hoping the Hospice staff will educate themselves. I'm cried out for the moment. I was able to lay next to him when he got onto the bed for a nap. It was so nice to spend a few minutes in his arms. He is sleeping a lot. I've learned from those who have gone before us in the war that it is better to call Hospice sooner rather than later. I welcome the support and care that they can provide to both Jim and I. Still hoping to make it to Massachusetts General Hospital's FTD Clinic on Monday. I'm reaching for the rope. Susan
Susan - throwing you a rope and sending hugs and prayers to. You have done the right thing by calling Hospice - hopefully someone on their crew will have the knowledge and experience you need to help you through this.
Intake with Hospice tomorrow and a NH Team Mtg. My Mom is stepping up and handling things at home without complaint. Glad my brother, nephew and son are coming up this weekend to begin repair on the mess that was my livingroom and master bedroom before the mold issue. This will keep my Mom busy as well. Found someone to take Dylan to the Ice Fishing Derby, his new passion :o) Praying for an uneventful night. Holding onto the rope. Funny, as soon as things turned bad, I grabbed my laptop, got here and jumped onto this site, my cyber home. Thank you for always being there. Arms around, S
Susan, your roller coaster never slows down or stops! Hospice is a wonderful help for us and our spouses (spice) and I hope that you will take full advantage of all that they offer. ((((((((((((((((((((((((HUGS)))))))))))))))))))))))
Oh Susan and DianeT, I hope that Hospice will provide the help and support for each of you right now that is so needed at this time. Adding hugs to those already flowing your way.
Had to delay the Hospice Intake till next week. It seems they will not provide services until all diagnostic tests are completed. We have some rain/snow heading our way Monday, so we have decided to leave Sunday morning to go to the hotel then Monday morning head to Boston. We will stay over Monday night to. Jim contines to decline. This will probably be the last time I will take him out. He is now having trouble urinating. They are going to do a bladder scan. He is being transferred by a standing hoist. He hates it. Sometime s he is quite lucid, other times quite childlike. This is such a change. He is getting a breathing treatment a day. The atrophy/neuropathy continues to spread. Oh well. One day, one step, one breath at a time. Thanks again for all the support.
Prayers and thoughts are with you as you go along. I hope you can find some peaceful moments during this horrible time. May God keep you strong for both you and your loved one....
Susan, hospice has been a blessing for us. My hubby in currently in the hospice center so I am having a respite period. My arms are around you and I pray you will get all you need to get the hospice underway soon. God bless and keep you strong. They have a chaplin that can visit with you as well.
Hospice was a life saver for me. Don't hesitate to ask them about anything. If you hear about something that you think would make it easier on you, ask. If you aren't happy with anyone they send, let them know and they can have that person replaced. Accept all the help they will give you and don't hesitate taking advantage of the respite they provide. I received five days respite every month. Those five days helped me face the next month.
I've really kind of thrown in the towel. Sounds creepy-mean, but that's my circumstance right now, finally. Did talk to the nursing home about Hospice (some of you had asked but I had neglected to get back to you as to my answer/decision). The nursing staff said that John was so unsociable and didn't want company or anyone touching him. Therefore, they suggested Hospice wouldn't be anything but an irritation for him. (?) Comments? (John is in a nursing home)
I've not had any experience with nh or hospice, but from what I've read, I'd call hospice and let them decide. Sounds like an anal, controlling nursing home, but I may be waaaay off base. Tell me, folks, if I am; so I don't get an attitude when our time comes.
I think Zibby is correct. The nursing home is thinking about themselves and not having anyone come in is one way they can stay in their controlling cocoon. I'd call Hospice and let them decide. They are trained in working with very severe people ..and they may be able to help out. AND, it's no cost to YOU...What's to lose?.. I've never heard of Hospice care hurting anyone.
Well we are in Haverhill, MA at the Best Western. They have a terrific handicapped suite. I keep noticing areas of decline. He couldn't understand how to turn on/off the shower, etc. I fear how he will react tomorrow when the give him the prognosis. I feel like he is hanging on just to find out - if that makes any sense. His breathing is very wheezy even though his lungs are clear. I have given him one nebulizer treatment, this afternoon, maybe one more before bed. Thank you for all the encouraging news about Hospice. Good nite. S
"You matter because of who you are. You matter to the last moment of your life, and we will do all we can , not only to help you die peacefully, but also to live until you die". --Dame Cicely Saunders (one of the founders of Hospice)
Todays appt was like nothing I have ever experienced! We were in a room full of doctors, each with a different FTD specialty. It was amazing. It was like a fact finding mission. They all will report in to Dr Dickerson who will put together a report based on the findings of the team and the MRI. There are only 3 MRI units as strong as this one in the COUNTRY!, Boston, Chicago and San Francisco. Jim is exhausted, and anxious to get the their report next week. There will also be a phone consult with Dr. Dickerson. Wow, what a day. They are in favor of us getting started with Hospice and will assist me in doing so. Gives me a mixed feeling, sad to have gotten to this point, but so grateful for such expert support.
Last night we went to dinner with our group of friends who reside in Mass. Jim did fairly well. When we were leaving one of our male friends offered to take Jim in his wheelchair down the ramp. When we got to our van, Jim thanked him and said goodbye to him and his wife. The way he said goodbye......it sounded like a final goodbye. We all got choked up. Jim deteriorated more today. His breathing has worsened, his pain is now full-body and he is more confused. Hospice should be doing an intake in the next day or so. I'm so scared. I'm really feeling that he was just holding on for this Drs appt. Now that is done, is he just letting go????? He made me promise, on the ride home, that after he was gone, I would take care of myself, be strong and not do anything stupid (ie: no more cars into the lake). I feel so lost, anxious, and so much more.
Susan, you are going to be so let down when Hospice does accept him, and this is normal too. However, Hospice does a lot of the things you used to do for him, and they take very good care of them. That will allow you time to rejuvenate and regain some strength. Understand that after Hospice has been with you for a couple of weeks, you will wonder what you did without them! They are for YOUR respite....and I don't think an AD patient can "let go" - I think that they hold it together for strangers, and then need to rest for a few days, then come back to where they were.....
Wow, your experience with hospice is so different than mine was Susan. The 'admitting nurse' met with me after spending some time following my husband around and observing. Filled in the missing information for her. She then spoke with the doctor for approval. Mark was admitted under a dibility diagnosis, not dementia, which I'm ok with. Dibility means that his rate of decline is exceptionally steep. Hospice goes into the ALF Monday, Wednesday's and Fridays to bathe him and clean him up. They are now paying for his depends and gloves, etc. They will also pay for some of his medications. Every little bit helps.
Thanks all for the encouraging words on Hospice. The intake should be tomorrow, I had to first reassure everyone that his testing is complete. Now we can go forward, wherever that is. He seemed a bit worse today and still has the feeling of impending doom that he has been right on with every time he has declined. I was told today that the Hospice Chaplin in an amazing lady. I can't wait to meet her. Arms around, Susan
Wow it is good to be back! My puppy ate my power cord which was thankfully not plugged in, or she would have curly hair! So I paid a ridiculous amount of shipping to get one here in two days. I felt soooooo disconnected from the world.
Well, Jim is home. I moved him back here on Monday. Tuesday the visiting nurse came out and did an intake. Right now he is HomeCare, in a day or so he should be hospice. Just waiting on the Neurologist to send in the order. So for now we have a home health aide 7 days a week, and an RN once a week and a Hospice RN once a week.
He really seems to be failing before my eyes. The decline is so rapid and noticable. His sister and brother-in-law from out west are arriving in a couple days, and his brother and sister-in-law will be here the third or fourth week of this month. My daughter will be home from rehab on Saturday! Oh how much I have missed her. She will be a tremendous help, she is a CNA, MA and Med Tech.
Jim spends most of his days sleeping. His breathing is wheezy and labored. We have a nebulizer, but it doesn't help much. He is enjoying the kittens and the puppy. Our 6 yr old grandson is providing lots of hugs and paintings :o)
I start my knitting class this afternoon. Can't wait! I hope to make Prayer Shawls for all my girlfriends.
Susan, it' great that your husband is at home. I hope it works out for both of you. My DIL made me a prayer shawl for Christmas and it is precious -- so warm and comfy on these wintry evenings. And I always think of her when I use it. Dh is often jealous, so we sit under it together.
I am so glad you have hospice in now. My prayers are truely with you. Its hard for us as spouses to see the declines because we are with our spouse all the time. My family could see how quickly Rob was failing before I could. Make sure you are also seeing the social worker on a regular basis for your needs. Mine is great. This all spiraled so quickly on us, even our hospice nurse was stunned. Let hospice know what you need at home too. They provide alot. (((((hugs)))))
So far so good. Each day is a little worse, but we are handling it. He is content to be home. It is so strange to see him sometimes slip into a "little boy" mode. My big strong husband has become so weak and needy. It is a labor of love, caring for him though and I'm working at finding bits of time for me each day. So far, it's working. Thank you for all the hugs and prayers. S
Susan, I am sending lots of hugs and strength in your direction. I know that when I decided to bring my husband home that people thought I was nuts. I had a hard time telling them how it was easier to do this at home than going to a NH to visit.....that it seemed right.....that somehow we were a couple again even if my husband was not able to move or communicate. I think he knew he was home.... Plus what a life lesson my young grandsons observed. They were able to play in PoPo's room....they helped me to feed him, they were amazed that I had to roll and change him....they learned that even though someone is ill and infirm they are still part of the family.
You are right, it is a labor of love and you will never regret your decision.......
Sandi, thanks for the supportive note. My little guys are learning a lot, most importantly unconditional love. It is a beautiful thing to see them sitting on the arm of his chair, sharing their stories, toys and such. I feel blessed to have this time for all of us to be together.
It has been 5 months since I had to place DW in a home. Her rapid decline has continued - she hasn't been out of bed now or 3 days. I won't get into all the details but I got called back to the N. home last night for the 3rd time that day. We decided it was time to bring in Hospice. Morphine and anti anxiety meds finally got her under control and sleeping around 1a.
I stayed the night with her in case she started struggling again. She talked more last night (though nothing made sense) than she has the last 6 months. We will do our best to keep her comfortable and pain free now.
While sitting I had lots to think about. One thought was spurred by the most recent blog. Trying to have compassion for DW's many friends and relatives who have chosen to be uninvolved. Doesn't work for me.
thenneck, Hospice will be a great support for both you and your wife. When we had them for my mom several years ago they were beyond valuable in every detail providing comfort, and loving support well after mom went to receive her crown.