How much harder does it get?

KathyF1

My DH is in stage 5. The hardest part of caring for him is keeping him happy. A lot of the time he’s fine, other times he feels the grass is greener and he wants to go to our other home in Florida with our dogs. Not possible. Our dogs are large, our home in Florida is near town, we’ve always used a house sitter for pups when we go. Now he argues incessantly about taking them. Plus they are dog aggressive, they are farm dogs and they simply can’t go. And he follows me everywhere. Talks incessantly, demands all my attention. Of course all that drives me crazy. But I know from reading posts that it will be harder in the future. I have our farm on the market, knowing I need family around to help. We bought a small farm near my mom and sister. The Florida house is so far away and I feel home base will be near mom and sister. There are good resources there too for in home help. Here on the big farm we are really isolated and the area is so rural that I fear I’d have a hard time finding good help. Plus I’m lonely!! And he is too. So far the farm has not sold. So we are in “ limbo”. I feel I need to be here for showings for now. The future move - I’m not sure when to plan for it. I often wonder how hard it really gets compared to now. So- on a scale of one to ten , if this is a 4, what will it be in a year or so? A “9”? He can still shower, dress himself, all of that. But even so some days I just feel completely depleted. If this is a cake walk compared to the future- wow. Scary. Just wanting to know what to expect from those who have been there.

Ed1937

Kathy, the answer is "You just don't know". My SIL passed from alz last spring. Up until the last few weeks before death, she was dancing with the staff at MC. She was pretty much happy all the way through.

Rick4407

Hello Kathy,  I've been on this road for 5-6 years.  My DW is late stage 6.  My feeling is that it that it has not gotten any harder with my DW.  I've made adjustments as she has lost more skills.   Dressing has shifted from much more traditional to very simple.  Unless we are going out she wears Depends and a tee shirt or warmer shirt depending on the weather.  If we're going to the grocery I put a elastic waist skirt on her.  She wears some LL Bean bedroom slippers that have rubber soles everywhere.   Toileting has gotten easier with Depends. I know I'm going to change them 2-3 times a day and usually another 3-4 at night.  

The continual "where is Mom? Dad? Grandpa? etc.  I always respond the same way, "they are on the farm in Mississippi and we want to go visit as soon as we can."  Five minutes later the same question and the same answer.   She has an alarm pad on the bed that wakes me up when she gets up in the middle of the night, it is very "crinkly" when she lays down.  Every time I tell her "it's an old mattress and we're getting a new one tomorrow."   

When she picks something up at the grocery we don't need, "we have one at home".  You can probably tell your DH that you want to go to Florida too, and we're planning on next week.  I am continually surprised at how much I could tell my DW again and again and she just accepts it.  

When new problems arise I look for creative solutions.  When she would get to the bathroom before me she would urinate sitting on a small bench in the dressing area.  I've removed one bench and replaces it with a plastic stool with a bed pad underneath.  Tomorrow a portable toilet is arriving from Amazon and that will replace all the sitting places in the dressing area.  

Hygiene continues to be a continual problem, but I've reduced normal cultural standards to considerably less often for her.  

The deal breaker for me has always been hostility or a complete lack of cooperation.  We have not reached that point and may never.   She is with me literally 24/7.   It is hard, but we had 7-8 really good years together before her dementia.  I reflect on those occasionally.  Once she is gone, I'll forget the hard years and remember the good ones!

One day at a time, just one day at a time.  I hope you can find some methods that work for your DH!  Rick 

KathyF1

Thank you Ed, and thank you Rick. You both seem like saints! I pray I can roll with the punches as well as the two of you.

toolbeltexpert

Kathy I agree with Ed, no one knows, but I pray for a merciful and peaceful end of my dw suffering. Is your dh on any meds for his behaviors, my dw is much more calm now, so much so like many I think I could take care of her and then the flood of what would happen at home hits me hard so I can clear that thought out. I certainly know what you mean about limbo, my farm hit the market yesterday and I have a disaster on the second floor of my house. 44 years of stuff.so do I pack it or leave it? I am doing the pile sort now. It really helps to get a grip on it. Next will be the 24 x 40 garage which is full. It was my shop and her wood working area. So it's not gonna get easy there. Need to sell as much as I can, not so much for the money, but to clear it out. 

We have 2 tractors, 4 running zero turn mowers, log splitter, piles of motors for parts and so on. Not counting the piles of steel I have outside.

Her care is personal pay which I can do for at least a year, I would rather be closer to her and if my farm can clear what I need it will bring us out a decade and a little home for me. I have lots of friends in the area my dw is in, so that is some comfort because our families are 1000 plus miles away in cold country, I am not gonna head that way. I lit my wood stove last night and it hit 80 last night even with a window open at 9 ft up. We have 10 ft ceilings. I like a cold bedroom but a warm house. Well sorry I rambled on, I am going to be praying for you kathy.

KathyF1

Aww thank you for praying!

Joydean

Kathy, I have read a lot on this forum current and some old ones. It is as so many have said, each person is different. My dh is late 5 and mid 6 stage. Compared to some he is manageable right now. Honestly some days I don’t think I can handle anything else. But the new day comes and we start over. Sometimes seeing and having to watch my dh changing, knowing I can’t do a darn* thing to help him is so hard. A man that was never afraid of anything, would give the shirt off his back to help anyone, a great father, the love of my life, to now see him nearly helpless is so dang hard. I’m lonely too, I enjoyed being with friends , laughing and having a good time. We just do the best we can, I can still find something to make my husband smile and that makes the day a good one. Giving him a manicure and pedicure and being silly will make him laugh. That’s a good day!  Each person is different. You know your dh best. You will find your way.

JJAz

Kathy,

In my opinion, it doesn't get harder; it just gets to be a different type of hard.  Some things you  get used to and they don't bother you as much, and then new things come along that you have to get used to.  It's amazing how adaptable we human beings are.

Blessings,

Jamie

Ernie123

Kathy: I would agree with Jamie that it is more a question of being able to adapt to the challenges that  arise. We all panic at times and doubt our ability to cope, are overwhelmed and guilty about how we feel and react to those challenges. 

I have some suggestions that you may already be pursuing but if not I believe are important. First you need a plan for the future. When each day can be a struggle it is hard to sit back and think ahead but doing so will help you feel more in control. If you have a local Alzheimer’s Society contact them for support. When my DW was progressing and her care was becoming more challenging I relied on their advice about how to manage her care and my own needs as a caregiver. Joining an Alzheimer’s support group can be very helpful for you. Talking informally about these challenges with a group of people who “ get it” can really help you especially when you are able to help others with the benefit of your experience. Just like this forum.

You need to plan for the eventuality that you may need respite help in your home so you can step away from care for a few hours on a regular basis so you don’t burn out. You need to plan for the eventuality of having to place your DH in care should his behavior become aggressive or his needs beyond your ability to meet. 

In the short term, if he is becoming more argumentative and agitated about things, like Florida and the dogs, your physician may prescribe an antidepressant to help calm his agitation. If you can have him assessed by a geriatric psychiatrist who will follow his disease progression it may help avoid future behavioral issues that would be very difficult for you. Plan for the worst and hope for the best.

My DW has been in care for three years. When it became necessary for her to be placed my brain was a snow globe of stress. I could not have made the decision without the support and advice  of our doctor and Alzheimer’s counselor. That was the most difficult point in our journey and I am glad with hindsight I had a plan in place that we could follow.