What I miss the most
All the things this disease had taken from us, the dreams of our retirement, travel plans, vacations, ect... The thing I miss the most is the time with our granddaughters. The girls are 4 & 7. We use to get them once a week for sleepover with Memere & Pepere. We would go to the park and play for hours. Now DH would just wonder away or start talking to stranger's children thinking they are our girls. We would go to the mall to see the animals at the pet store, then grab a pretzel and walk around Claire's. Our last trip to the mall was a disaster with DH's bathroom runs. We would have backyard camp outs. We would cook hotdogs on the fire, then finish off with smores. No more. Before bed we would play board games. The little one checkers and the older one chess. DH's game now is where did I put.... No more sleepovers since DH is up ten times a night wandering around the house or shows bouts of anger. Our daughter doesn't feel safe leaving the girls overnight anymore. I love these girls way to much to expose them to that. Last weekend we took them for dinner & a show. We went to see The Nutcracker. I took our son to help me with him. I taught preschool for over 30 years and now I need help with two, well behaved, great little girls and my DH? This is killing me. I MISS MY GIRLS! Every year we would take the girls and their friends Christmas caroling around our neighborhood. We would bake cookies to give away. A group of friends would get together and go sing a few songs and pass out the cookies. Come home for hot chocolate and a watch A Charlie Brown's Christmas. I don't think he could do all the confusion nor the cold. DH loves these girls and their company. He always asks when are we going to get them, what are they doing, are they coming over? I miss them so much it hurts. This disease sucks!
Comments
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my words exactly “this disease sucks”
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I am so sorry, Judy. I got tears in my eyes reading your post. Our grandchildren are much older, but I still miss going to visit our children. Our daughter moved from Maryland to Massachusetts three years ago and I still haven’t seen her new home. This is a lonely journey and only those who have walked this path can fully understand. Sending you virtual hugs today.
Brenda
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My girls are 7 and 4 also. My kids were 8 and 6 when we bought this farm, it is wonderful to see the second generation enjoying it. But it's not the same without my partner here. I completely understand. Hold on to those memories, they are important.
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I suggest asking your son or your daughter to stay at the house with your DH while you take your granddaughters on one of those mall excursions or to a movie. There is nothing anyone can do about their relationship with your DH, but you and them need new experiences with each other. Even if it’s just you go to their place for hot chocolate and board games while your DH stays home with son or daughter.
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@Quilting brings calm I just love your suggestion.
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I’m there with you. We live 7 hours away from 2 grandchildren, 13 and 10. The third is across country who is 13. We used to travel to spend time with them. Now, between Covid and this disease, I can’t leave him. My daughter and her family who is closest to us came to spend thanksgiving with us. It was wonderful. My other daughter and grandson are flying to see us in March. It’s been almost two years since I had seen my children and grandchildren.
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I totally get it! All our kids are grown. What I miss the most is the memory sharer. The only one who used to understand the internal jokes, or sayings. Now it’s rapidly going away and instead I get a glassy eyed look of confusion. 55 years of relationship slipping away slowly.
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To each one of you missing your grandchildren my heart hurts for you. Was going to suggest what Quilting Brings Calm suggested.
Your time with the grandchildren and your grandchildren’s time with you is very important for all of you. So is your time with your own adult children. Children are very resilient, and as they get just a little bit older, they can take care of themselves and maybe even help take care of their Pepere. There are books out there teaching children about dementia. I know people on here have talked about that. I can’t remember the name of the books but maybe someone used them and can remember the name of the book and let you know. There’s been some very heartwarming stories on here about children’s insight into their grandparents with dementia. Was very good that they felt free to talk about what was going on and their understanding of it. If the parents are unable to come and stay with your husband maybe a friend or maybe you can hire someone through a caretaker group to sit with him for that, just a thought.
Things are even harder when they live many miles away. One thought is you can put someone in a nursing home for like a respite stay for yourself. I knew a lady who had to do this because she had health issues and there was going to be no one at home to take care of her husband, their children lived out of state. So she privately paid for him to stay there until she was able to bring him home and take care of him. So that is something else you could look into for taking a trip to see your children and grandchildren.
No, it’s not the same but it’s part of life dealing with change. So it can become a teaching moment for the children. But it still hurts. We still cry when we get off to ourselves.
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Judy,
I am so sorry to read your story as it so resonated with me. I had DH at home with me for 11 1/2 years while 7 of our 9 grandchildren grew up around us, within walking distance, with 2 others across the country. Little by little over the years, it became increasingly difficult to do anything meaningful for, or with the kids. COVID gave us a short reprieve, but by the time that was in the rear view mirror, sadly, DH had progressed to the point of no return. Sporting activities , school programs, beach vacations, traveling to visit, even family gatherings became too much for DH. It was easier to skip and stay home altogether. I admit I felt more and more resentful. A planned 30 day respite in a MCF turned into permanent placement when my kids took the reins, banned together, and pointed out that they were losing both parents to Alz., their mom as well as DH. DH resided in the MCF for 17 months before passing in April.
I understand that my situation is/was financially feasible and DH had progressed to where he no longer knew us, making placement less difficult. I understand it’s not that “easy” for most. I have slowly regained some semblance of normalcy and happiness as well. I miss DH every day, but I’m thankful for all I’m rediscovering: basketball games on the hard bleacher seats, baseball and softball games in the blistering heat, soccer matches, amateur theater productions, band concerts, choir concerts- - all the trappings of school age kids, over and done with in the blink of an eye. My heart truly aches for all the everyday, normal things that Alz steals. I hope you, all of you, are able to find some relief; life is too short to miss out on the things and people we love. This disease “sucks” indeed!
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Sayra, first our grand kids live out of state, but we are more than happy to travel every week to get them. Our children are always there when I need a break or DH needs them. They help in every way they can. Our daughter has read the books to them and they are fantastic! If I have an appointment our daughter & the girls will come hang with Pepere. They take help watching Pepere very seriously. They will come run and say "Pepere went out the front door!" When DH forgets their names they just roll with it. The 7yr old will read stories to him now. They know compassion and responsibility well beyond their years. Maybe that is why I miss them so much.
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What I miss the most? The other half of me.
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Judy sounds like you and DH have a good support system and your grandchildren are very precious and have adapted well. Very nice that you and DH have such a caring family.
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I miss empathy and consideration for my needs. Last night I got my DS to watch my DH so I could do a concert with my choral group. He never really asked about it, just said "Did you like it?" and then not much. I miss him being someone I could bounce ideas off of. I miss someone to share the load in the house.
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We are still fairly early in this journey. We have 4 grandchildren ranging in age from 1 month to 7 years old. We have 2 adult sons. 1 son lives with us and he has full custody of our 7 year old grandson. We also have our 4 year old grandson here a couple days per week. 2 are out of state. I have been trying to travel down to see them Every couple of months while we can still travel. None of the grandkids have realized something is different but I do have a book ready for when they do. I think it is called Grandpas balloons. Hugs to all the grandparents on this group.
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The fall before COVID our daughter and I went on a mother/daughter cruise. We decided we would make this a yearly thing. Then COVID hit and we had to cancel our plans. Then Alzheimer’s hit and I can’t leave my husband alone for more than a few hours. I worry by the time he is either in a home or no longer needs me I will be too old to travel. What I miss most is that I may never get to go on another mother/daughter trip.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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