Yesterday, Wolf wrote a wonderful post on the Widows and Widowers Thread. In it he speaks of the ultimate goal of us as spouses-- our surviving. I wanted to bring this to the attention of all the spouses and especially those just starting the journey. There are things you can do to facilitate that goal even in these early years and during the time of the most intense caregiving.
I have posted many times before about the importance of getting help in early. The sooner a dementia spouse gets used to having helpers in the house the better for you, the caregiver. This is one way to prepare your spouse for the time when the help will be there specifically for his/her care. Having help in the house will facilitate your being able to maintain, maybe even start activities for yourself. That's one kind of respite, that can really help you keep going. It doesn't matter if the help initially is just providing basic household chores. That also reduces some of your stress. The caregiver needs to focus on doing those things that only they can do. The way to do that is to delegate the chores that anyone can do to helpers. As the spouse declines helpers can provide some of the care, another way to provide you some breathing room.
I think every caregiver I've come across on this board has said their goal was to get their spouse through with dignity and in love. Additionally their goal is to survive. But many of them immerse themselves in the caregiving, in doing it all themselves, and when finally their spouse passes, they are lost. They been so busy during the caregiving they've lost connection with things they were interested in, connections with friends. They're suddenly faced with hours and days empty and no clue how to fill them. Their spouse is gone; they're immersed in grief; and don't have much clue on how they're going to achieve the goal they claimed----to survive.
Keep in mind that when you were both well you both had mutual interests and individual interests. You did things together and you did things separately. That's important. Maintaining the time for yourself, even if reduced, while you're caregiving is one way to maintain a foothold toward your survival. Experienced caregivers find that the dementia spouse may not want help, may only want your help, but when presented with a basic factor that a certain helper will help him because you will be doing something else the dementia spouse will adjust and will accept. Insisting on this is not selfish, it's survival.
To survive the caregiver needs to grasp this idea early. Maintaining a small portion of self identity from the beginning will greatly help the caregiver when facing the end time. They will be stronger, more able to handle their grief and establish their new life--AFTER. Wolf has it right. We have to approach our recovery after with genuine intent. I think we need to start immediately in the small ways with..... genuine intent.
First and foremost I want to keep DH happy. And take care of that first. He is on Hospice, by the way. This is what I do for myself I have several single and married girlfriends who I have kept in contact with and that has helped. I also have DD still at home so my story is not the same as most others. Still have one more year with her. The other thing I have been doing is going through DH stuff. The things that are stored away. Selling or giving away what we don't need. I am not moving the items he sees every day. He now no longer goes into his den. I have left it as it was for now. I don't want to upset him. The other thing I am doing is planning on redoing our/my bedroom after. I have picked out what I want to do. I feel like I am a bad person sometimes for doing this. I am a planner and like to have a handle on what is going on in my life, silly me. All the kids are ok with this. And my friends understand too. If I think ahead about it, I find it helps fight the depression. It helps me feel like I have a future. Just some of the things I am doing to keep sane and connected with the real world. I do my shopping and looking online.
Thanks, Carosi2*, for saying this so well. I hope that everyone new to this site will print your comments and thumbtack the page to their bulletin board. And thanks to Wolf for his thoughtful post. His words have been running around my mind, even at night. I've wanted to comment but was lost for something to say. I guess that's the key. He said it all. You are asking all caregivers to read his posting.
I just finished reading Wolf's post. I am always in awe at how well Wolf can express his feelings, and how accurately he can portray what I and others are feeling.
I guess genuine intent (and at the urging of my daughter) is the reason I recently went for a check up; I am guilty of not having been to a doctor in years. No surprise I have high blood pressure that is not caused by any medical condition, just stress and lack of a sound sleep. So I am now on meds for the first time in my life, and learning to take care of myself, in addition to looking after DH and worrying about my adult kids. My doctor would like me to think of myself first. Well, I've never been able to do that and I wouldn't know where or how to start - I've always put myself last - in Wolf's terms I am an abused animal, but the abuse is self inflicted.
Carosi2*, I did have a helper coming in every other week for a few hours to give me some respite. It was lovely to be able to leave the house and know that T was in good hands, and I realized that the time away was good for me. Unfortunately, the helper retired. The agency that supplies the helpers has not been able to find a replacement, and the irony is I was just approved for more hours. So now I am left to caregiving 24/7 with a break for church and choir practice (part of our routine that hubby can deal with) and no idea when I might get a few hours to myself again. T tried daycare and hated it, so that is not an option. So now, when I am finally trying to look after "me too" I feel like the rug has been pulled from under my feet, and as I am writing this I am sitting her bawling my eyes out and feeling terribly sorry for myself.
Maybe I will go have a nap and after that I will be able to put my big girl panties back on and deal with the rest of the day.
A dear friend who walked the walked of care giving for many years and then faced some other personal disaster, reminded me the other day to get my shingles vaccine. She came down with a nasty case of shingles at the worst of times, and said that with the stress we are under it makes us more vulnerable to contracting a case. Although the vaccine is not 100% effective, even decreasing the severity of a case is worth it. So I got my shot at the local pharmacy and asked the pharmacist about my DH, his condition, and the meds he was on. The next morning (before the pharmacy got busy) I brought DH in for his shot and the pharmacist, who was now on board, was kind and efficient. Some insurances cover the whole cost (it is pricey), but if yours does not check with the Board of Health or a senior center or even the pharmacy to see if they will cut a deal.
bqd: Have a nap and while you are resting the problem solving part of your brain will be working. It is surprising that an agency doesn't have any helpers for you! Did you ask them to refer you to one that did? That is like a car rental place not having cars. Best wishes and hope a fair wind is blowing when you get up.
I agree that having some help come in early is important. I started last fall having a woman come on Fridays. I told DH that she was here to help me with the cleaning. The first week she helped me clean the windows in the sunroom. The second week I left for an hour to do some errands, and by the third week he was used to her being here and now takes it for granted. In February I started another caretaker through an agency. By then DH didn't even question me about it. Occasionally he'll ask if someone is coming that day but that's all.
Now that he really can't be left alone, even for an hour I'm glad I started when I did. It has saved my sanity to be able to get out even for 3 hours twice a week (sometimes more if DD who lives here has a day off mid-week).
PS: yes getting the shingles vaccine is important. My doctor insisted on it 2 years ago when no one would pay for it. DH had his last year and it was partially covered. I have also heard that you can still get a mild case but without the residual nerve pain that can last for months.
Marche, thank you for your best wishes. I did have my nap, and I am feeling better now.
For us, its not as easy as asking for a referral to another agency to fulfill our need for a helper. I think I have mentioned on a different thread that we live in the middle of nowhere, which has its advantages of peace and quiet, but its disadvantages in the choice of services available. The agency that was supplying our help is the only agency in the area. The demand for their services is far greater than the number of people they employ. They can't seem to find enough qualified people. The other thing is that if I use the agency services, they are 100% government paid, and since we are retired on a limited income, this is important as well. The last thing I want to do is to start adding stress about money to the already long list of things I can get upset about.
But the problem solving part of my brain did do some work while I was napping. So what I have decided to do is tomorrow (not a holiday here) I will call the agency and see if I can put some pressure on them to find someone. If that fails, I will call our social worker and explain the situation. Perhaps she knows someone who is willing to work outside the agency. I do have some private health insurance that will cover a limited amount of home care support, at least enough to give me a bit of a break from time to time.
And I have also decided that each day I will try to do something nice JUST FOR ME, even if its as simple as going to the corner store and buying my favorite chocolate bar, or picking a bouquet of wildflowers to put on the table for ME to enjoy. You can probably tell I've pulled up my panties and I am ready to wage battle again!
I have help 3 times a week for 12 hours for which I pay 18 bucks an hour. The girls are wonderful cooks and that alone is a huge deal for me. And they help with light housekeeping. There is a lot that needs done...so much has to have decisions made and that they can't do for me.
I too find myself thinking about making changes in the house someday...some I would like to make while DH is here. Others will have to wait. I get sentimental about things so I suppose the first thing I would consider is sorting out the things of DH so that the kids have meaningful things especially things they have given him over the years that they might treasure....favorite shirt or cowboy hat, etc...not his military gear, not yet...
I was going to go through his clothes now and then decided to wait..he is dropping wt now but that could change with changes in meds and an appetite improvement. So we shall see...but some things can go...I just need to get my rear in gear to do it. Right now I am working on the yard...once the house and garden look nice again ( we had some bad gardeners that I fired a month ago and new ones that are doing a super job) well getting those little jobs and not so little jobs make on feel empowered at least for a little bit.