Hi everyone, I am new to this blog and am here because my dh has dementia, not ad, but very similar. He is in a care center And althought he has been there for 2 yrs I will never accept it. He was taken from me when, after a hospital Stay, they admitted him to a rehab, then to a permanent care center. I cannot give him the 24/7 care he needs. The days I dread most, I call 'awareness days,' when he knows he is not home. Yesterday I went to visit him and when I entered his room, I could tell he was different. He knows me and is always very happy To see me. Yesterday he had tears in his eyes and I completely fell apart. I asked what was wrong, he looked Up at me and said "Look around". I knew it was the dreaded awareness where he knows what is happening to Him. How do I handle these days'? I stay with him, trying to reassure everything will be ok. Then I go home and Sob the rest of the day and night. I pray for a healing miracle daily. He was on hospice but they just took him off Because he showed no decline the last few weeks. Now, he will not receive the extra care they provided. Oh, life is not positive for me at this time. Thank you all for listening. Any advice would be appreciated. Thank you, Jeanne
I don't have any advice but I do very much like this phrase "awareness days." It could also be "awareness moments" and they might be the most wrenching of all that we deal with here. Others will be along with coping advice. I hope this thread can also weave "awareness days" into the fabric of our discussions. Thank you for that. May this website give you the knowledge and courage to reframe your life.
Welcome J_eanne...sorry you need to become a member of this website, but it is truly a wonderful place for information, comfort, support and understanding. There's no other place like it.
When you feel up to it please tell us more about yourself and your husband's condition.
Jeanne - Welcome....sorry you have to be part of this group. Noone wants to be here but we are all glad we have this place to come. My hubby isn't in care so can't help you but I know some of the members whose spouses are in care will be along soon with some really good insights.
Welcome J_eanne, So sorry you have to join us. My heart breaks every time someone new joins our group. But you can find no better group of people to comfort and help you. Please don't be so hard on yourself, you are doing a great job.
welcome J_eanne. new members are so welcome but we know the sadness at having to find this great group of folks who talk and walk the walk so to speak. we are many who are at different intervals of dementia diseases, FTD, vascular, alzheimers, or any variety or combo thereof. many of us like myself are in end stages now for sometime, others like yourself just joining. its heartbreaking to have them aware of their demise. mine I would say the only blessing of alzheimers is he had no awareness of his illness throught out the journey. there are many others here who like yours is quite aware and know what they are going thru. its got to be very difficult to witness. you seem to be doing all you can and the right things to help him thru. hospice will come and go when he declines again you can have them re evaluate him. glad to see you here for support and guidance, but know the grief and sadness that accompanies being here. divvi
Those "awareness day" will decrease as the disease progresses. In the meantime, you can only say, "Yes, I know. But I'm here with you. And I always will be." It hurts, but it's something you can get through.
I feel the pain you are going through. As you can see by the * after my name, My dear wife has passed and looking back on the dementia journey, it just seems like a bad dream. Almost like it never really happened.
She had vascular dementia which normally is a much shorter trip than alzheimers. Also we were older than most caregivers here which is another blessing because we had lived the good life, and outlived all of our best friends.
So, Jeanie, tell us a little about yourself. Click on accounts and fill us in. If your dear husband has Vascular dementia, I can tell you a lot about that. Probably more than you want to know.
I hope this site will do as much for you as it did for me. Continue to be brave and you will come out of it OK.........GeorgieBoy
Yes I'm sorry to say you are in the right place. We have EOAD which is Early Onset Alzheimer's Disease but they're all forms of dementia. Welcome J_eanne.
Thank you all for the comments... A little about myself: my dh has Lewy body dementia...all dementias are horrible, but LBD, it seems to me is the worst of the worst. It is more like PD in the fact my dh occasionally shakes and can't seem to stop, then it stops, Only to return whenever, maybe 1 day, maybe 5 days. I drive 40 miles about 4 times a week to visit him. He does Recognize me and is happy when I enter the room. These weekly trips are wearing me down. When I visit him I spend at least 3 hrs helping the nurse and aids care for him. He loves classical music, opera especially, so I Play the CDs I purchased of his favorite arias. The only problem, I cry listening to them...oh I wish I were stronger And could handle this. My dh has always been there for me, so I can only do the same for him. I miss him so much. It's been over 2yrs and it hasn't gotten any easier. I am consumed with his care and want only the very best. My DH was on hospice for 6 months and because he has not declined, they are dropping him. I was not aware Hospice could just drop a patient. The took away his hospital bed and replaced it with a standard care center Bed, no air mattress....or adequate railings. He is totally bed ridden due to a broken leg, caused by the hospice nurse. She tried to bathe him alone, it takes two....so he slipped and a broken leg resulted. My dream is to Have him home with the help I need to care for him. Yes, it's only a dream...but it keeps me going. Thanks for listening,
Jeanie, it is nice to meet you, despite why we are here. I too am somewhat new here. My eyes are being opened by all the info. You can feel the love and friendship. I'm sorry to here what you are going thru. I think on some level your dh, knows your doing all you can for him. Stay tuned, we need your help too. Bonnie
Jeanne--is your husband enrolled in Medicare? Under the Hospice benefit, certain medical equipment (such as a hospital bed) is covered under Part A. In other words, you own that bed, even if your husband isn't enrolled in Hospice anymore. Yes, they can disallow his Hospice care when the period is up if he hasn't declined sufficiently, but he can be re-enrolled later on if there's another decline. My husband was on Hospice at home over two years ago, came off in 6 mos. About a month ago he went back on it at the ALF where he lives.
I am sorry that you have to be a member here, but so glad you found this site. You will get many answers to your questions and mental and moral support when you need it. There are several members here whose spouses have LB and hopefully they will come along.
It doesn't matter what type of dementia symptoms your LO (loved one) has what's important is that we are all going though this. Everyone here has either completed their journey (* behind their name) or are at various stages of dementia.
Perhaps someone here may have some suggestions as to how you can accomplish your "dream" of caring for your DH (dear husband) at home.
Oh Jeanne how heartbreaking!! When I first placed my husband he did have moments of clarity and pleaded to go home with me and it nearly destroyed me! Once the trauma of placement was over he forgot he wasn't home and never mentioned it again. He is late stage and has been there for 4 and 1/2 years, often he thinks he built the facility and asks me what took me so long to get back home.
He still has moments of clarity, but not to that degree. He still knows me and responds to me but isn't aware of his condition or where he is. He has been blissfully unaware for years and for this I am eternally grateful.
I wish I had some wise words of wisdom for you, but the truth is nothing hurt me more than when he knew what was happening to him. I am sorry Jeanne, I know it hurts so deeply ((hugs))
There is a thread in the "sticky" section at the top of the page titled .. Caregiver life with spouse in residence (ALF, NH, LTC, etc) there you will find people who have placed their loved one. Though none of us have had the same experience we do understand the heartache of placement.
Hi Marilyn, Yes, my husband is enrolled in medicare, part A. I also thought the hospital bed was ours to keep, but found out equipment is rented these days. The air mattress was also removed. My dh is bedridden and i worry sores may develop. This is all due to the recent medicare cuts. It's no longer prevention care as it once was. I learn more each day, sorry to say. I will call Medicare and ask for clarification. It's seems cruel to snatch a bed literally right from under a terminal patient. Nikki, I will check out the "sticky" thread. Thank you, Lullie, yes, if anyone can give me any suggestions on how to make my dream come true, having my Dh home With 24/7 help, I would be eternally grateful. Jeanne
Welcome to this forum. There are many who will be of great service to you here. The veterans who have placed their LO will know and understand you in ways those of us who didn't have to do that can't. But we all understand the hollow empty feelings and the sense that we feel we should be able to do more but can't and feel badly about that do hear you. So feel free to ask anything you need to and don't be afraid to vent when you need an outlet. This is the best place for support and useful information.
Jeanne, I was basing my comment on the fact that my Dad was given a hospital bed and we were responsible for getting rid of it when he passed. However, that was in 2011, so you are probably right that Medicare cuts may have changed things by now. I'm wondering if a doctor does some sort of justification based on the fact that your husband is bedridden, terminal, etc., whether Medicare can allow another bed. You might want to ask about that--can't hurt to find out.
Just a thought here, but some families are trying to get rid of hospital beds that they no longer need. There must be a network for finding a bed that is wanting to be donated. You might start with the nursing home. They don't want to have their patients getting bed sores so ask the liaison or social worker or director how getting a bed denied by Medicare might be done. Nikki, bless her, could probably write out a compelling dialogue for you to follow when you have that conversation. Your concerns are valid and justified. Good luck.
Well I did learn, in my scenero anyway, that if a doctor prescribes medical equipment, ie hospital bed, Geri chair and its covered by your insurance, it is yours to keep after one year. If Hospice provides the Medical Equipment it is considered a rental and is removed when their service is terminated. So that explains a lot. The Care Center where my DH resides chooses to let Hospice order the equipment. He is being assessed By another Hospice as we speak so hopefully he will receive another hospital bed quickly. I am in fear he will Tumble out of the bed he has now...the side rails are inadequate. His awareness of where he is seems to Have vanished. Thank you God for that! I pray it does not return anytime soon.