I just want to pick Bob up from Day Care, come home from work and carry on a conversation, a true conversation. I want to tell Bob about my day and have interaction, not give direction. I want Bob to hug me and comfort me and let me know that everything will be alright. It is not that I think friends and family don't care... but at the end of the day I am still alone.
Hi Sherizee, I am so sorry you are feeling so alone and sad today. You are not alone. You have me and I know you have so many more. Everything will be alright and if Bob could tell you that he would. It will be okay. We will all be okay. Everyday try to find one thing that you are thankful for and know that so many of us feel the same loneliness especially at this time of year. If you have time, tell me a little about what your circumstances are. What stage is Bob in? My husband is 65, was diagnosed two years ago with MCI and is entering the 6th stage. I am 46 and we have two preteen boys. Please take care of yourself and know you are NOT ALONE.....Love, Christine
Sherizeee, I know it is not the same, but you do have all of us here on this forum. I read it every day, even if I don't post, and thoughts, prayers, and well-wishes…and hugs…are with everyone who is going through this horrible journey we're all on. (Even when it's over, it's not over. Sigh.) Most people don't "get it", but the people here do truly understand and are supportive of each other. We will get through this together.
Sherizee Feeling alone is so heartbreaking...so painful. Only those of us on this road can understand the longing we feel for the Relationship that is lost...even if our spouse is in our home.
Do you ever just want to shake him and have him suddenly return to "life". I do! I miss everything we once shared ..the conversation. Yes ..that is long gone. My husband has been in an ALF since August and now in ger-psych. There is no language left. Gibberish and a word here or there. I don't know what he may understand.
Feeling ALONE and yet I am still married. Searching everywhere for the husband I once had...long gone
Thank you for all of your support, we are 7 years to Frontal Lobe Dementia and Alzheimer's. My daughters were 15 and 17 at his diagnosis, he was 64 at official diagnosis but it was present may years prior. I was just shy of 50 at his diagnosis. Just seems like forever ago.
Hi Sherizeee and everyone else on this thread - I think that feeling of aloneness is exacerbated at this time of the year. Christine, like you, my husband is also 65 and was diagnosed 3 years ago with MCI but has gone downhill at a rate that seems off the charts to me. Last week at a review meeting at his facility, the psychiatrist said he is now classified as an 'advanced dementia' case, so I guess this means he is stage 7. He doesn't know us now, can't make eye contact and his speech is total gibberish - so heartbreaking. Yesterday I bought a big teddy bear to take him for Christmas as I just couldn't think of anything else.
Last month I spent a week down in Palm Springs with some family members and while it was lovely it seemed that everywhere we went we were surrounded by older couples walking, eating, talking, laughing and it made me so sad because I know those days are gone forever.
I hope everyone call still find some comfort and joy in this beautiful time of year.
Hi nbgirl. I am sorry that your husband is declining so quickly. Some days I feel like my husband is and other days it is painfully slow. I wondering if you would mind sharing what was going on when you placed him ?
Hi Christine - my husband went into care at the beginning of March last year (I had been looking at places since the previous September but nothing opened up right away). I was supported in the decision by my three adult children. I guess what really precipitated it was when he started having delusions at night and would be banging the furniture around and pulling clothing off the hangers in the closet, etc. When I would ask what was wrong he would say "I can't get out of here" and when I would say 'out of where?' he would just keep saying 'here'. It started to frighten me because I knew I could not control him if he ever was aggressive with me. It was also at the point where I could not leave him alone during the day, even to do a few errands, and I really did not want to start having in-home help as I felt it would be a constant stream of new people for him to make adjustments with. I think his family (his brother and sister) were initially displeased with my decision to place him as they thought it was too soon, but after visiting him a couple of times in care, they told me I had made the right move. It helped me tremendously that they understood. The year has been full of ups and downs as he had to leave the first facility after three months because of his agitated and aggressive behaviour. He spent three months in hospital while they attempted to regulate his medications and suffered his first seizure while in hospital. Finally, this past September he was placed in another facility and it was a rocky start but I'm thankful that at last he is calmer and happier and the staff tells me he is much easier to handle. How long this will last is anyone's guess.
I know it's such a personal decision on placement and no one else can really tell you when the time is right - I think you will know. You have a young family and I'm sure that will influence your decision. All the very best going forward.
Even though my husband is here, he is not. He sits and does word search all day or goes out walking. I go to the store almost every day just to get us out of the motorhome (we live in one). Some of the hard things are I read something and can't share with him. If I do it is really not a conversation, he just either agrees or if it is political he gets upset. So I keep it to myself. It has been 6 1/2 years and I fear how much longer this hell will keep up. Will he be like his sister and go in 9 years, like his dad 25 years or somewhere in between. Will I be still able to have any life when this is over? Unlike most I can't wait for him to be far enough along so he can be placed and I will have some freedom. How long before that time, only God knows.
I probably have the most in common with you Charlotte. I also cannot wait until he is either far enough along to place or does something illegal enough that law enforcement steps in. I am definitely not of "caretaker mentality". After a thirty year marriage filled with his infidelity, control, abuse and general psycho behavior -- I also feel no guilt about that.
Nbgirl, my DH is presently calm and blissfully unaware, but I am very afraid that what happened to you will happen to me. I don't have the money, however, to place him. I am so sorry for all you have been through. I wish you all the very best going forward too. Thank you. xo
Charlotte....you also are living in a terrible situation...6 and 1/2 years is a long time.
I feel like my DH has been showing signs for a long time, but again was just diagnosed with MCI less than two years ago and we are approaching stage 6. He is very confused most of the time, is frustrating to live with and can not speak clearly at all and we can't have any meaningful conversation with him. I pray every day this will all be over quickly and that some type of aspiration happens sooner rather than later as he is having some issues with swallowing now. I know it sounds uncaring, but as hard as it is now I want my two young boys to remember their father the way he is and not in a fetal position or having to be fed. I pray every day that God will take him. I do feel like it is happening fast most days, but as we know the reality of this disease is so unpredictable. I am thinking of all of us and everyone's unique situation.
Sherizeee, I feel the same aloneness that you described in your post. I had DH in daycare the other day and it became dark and cloudy outside and started to rain. I felt so alone. I couldn't wait to pick him up and bring him home. I only have his body here, though. No conversation, no hugs, laughs and sharing. I miss him so much it's almost unbearable some days. I think the short winter days make it worse....and maybe Christmas with the memories of all the good times. Charlotte and InJail, I don't see how you continue to take care of your husbands when you have no good memories to keep you going. My heart goes out to you.
I do what I have to do - have no choice. He is not bad enough for placement, I can't divorce him and there is no one else to take care of him but me. My computer is my escape and the lady in the 5th wheel across from us tries to keep me doing things. If we get a dog that will help I hope for both of us. Gives someone central for us both to focus on. Lately he has started thanking me for fixing his meals and doing his laundry and it is driving me crazy. I hate when they do nice things now when they couldn't do them when they were 'well'. Some might say 'enjoy it while you can' but not me.
Charlotte, Is the lady with the 5th wheel the neighbor who you thought might be offered a job somewhere else and decide to move there? I think you were afraid that you would lose your last close contact in the park. If this is the same person, does this mean that she decided to stay through the winter? For your sake, I hope so.
I admire you for deciding to get a dog. I hope the dog will bring some positive energy into your life. Now that my husband is in LTC, I have been thinking about getting a cat -- both my cats died last winter -- but I just can't commit to taking care of anyone else yet.
yes the same one. She is an outdoor person - needs fresh air. She will have her door open almost anything it is above 45. The lady in Nevada had an expensive home, in a gated community, security alarms on all doors and windows, doors must be kept closed and locked even when in the house, no opening even your window. She could never live that way. Funny and sad both cause she is trying to find out somewhere to do/go before we leave the park. She doesn't want to be left alone. I totally understand and am encouraging her in building a life she likes which starts with she is looking to buy a class C motorhome so she can travel and visit friends mostly in OR, WA, ID, NV and AZ. She loves the heat so would love the Arizona hot summers.
Well, I'm glad she is staying for the winter. Maybe by the spring, you will have found a good apartment and she will have a new motor home, so neither of you will be stuck in the park alone.