I feel Charlie slipping away

[Marg52]

Hello all I’m pretty sure I know the answer but I come to all of for advice, Charlie has had MSA now for 13 years now yesterday and again today all he wants to do is sleep the day away. Is this the begging of the end.

Marge52

[Hidden]

After 13 years it might well be. These diseases are so hard to predict.

[SewBears]

I suppose it could be? Have you tried to engage him in any outside activity or is Charlie too far along for that? Sometimes I wonder if my husband sleeps because of boredom. That’s when I ask him to admire the sunset with me or if he’ll go with me to take our dogs for a pull and a carry.

[Marg52 in reply to SewBears]

Yes he is in a wheelchair he no longer can stand or walk

[SewBears in reply to Marg52]

I’m sorry! I guess at this point all you can do is appreciate the time that you have left. Understand that when Charlie goes his suffering will be over. This is really difficult and I feel inadequate to be able to offer advice. I think there are others who have been through this stage who are better equipped than I am. One just never really knows with this disease. Maybe Charlie’s rollercoaster is winding down. Sometimes I think this would be a blessing in disguise and then I get weirded out by the thought.

❤️

[Marilyn_cbd12]

Marge, oh I can so relate to this. My husband is in his 13th year of CBD and I feel as though he slips away a little farther, each day. In the last 10 days he has lost about a half pound a day and he is so very weak. And yet I know from the experience of others on this site that sometimes patients can seem to plummet, but then do better. I am trying to touch and hold him a lot so that he feels warmth and love often and knows in a concrete way that I am close to him and he isn’t alone. God bless Charlie and the time he has left

Marilyn

[bgentges]

We have used the exact words about dad recently. He has lost a lot of weight, eats and drinks very little, and seems to sleep much more. He has pulled thru other illnesses where Hospice felt the end was near, this feels different. It is quiet, not the panic of the pneumonia he has had in the past where he wasn't expected to make it thru, not the declines we seen before, those where "loud" (for lack of a better word). This is quiet, almost peaceful, slipping away. I don't expect dad will be with us much longer. I would be surprised if he make it to Christmas.

As the end seems to be closing in on us, I don't feel the panic as I have before, I feel at peace, almost a relief thinking that the suffering is close to being over and dad will get to move on to his heavenly home. He will get to see my brother and play with my beautiful little niece both who left us way too young. He will get to play cards with my aunt and grandparents again. It almost makes me jealous.