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spouse with dementia intimacyPart I of this series covered the emotions you might experience when putting a spouse into memory care. When your spouse moves out of the home you’ve shared and into memory care, you’ll need to work on building a new relationship, one that may not be the same as the one you’ve grown used to, but can still give you a connection to your life partner. You may find that your spouse no longer knows who you are. As heartbreaking as that is, they likely can still recognize you as an important person in their life. Don’t worry too much about convincing them of who you are, as this will likely only lead to frustration. Regardless of whether they know you as you, you’re still important. You’re probably the one they see most often, and they know that you care about them a great deal. It may be hard to accept, but know that that might be the highest honor your spouse can give you in their current state. Your visits, even if your spouse isn’t aware of them or doesn’t register their significance, are now the most important way of honoring your marriage. It’s possible to find new ways of enjoying intimacy with each other. A good care facility should give you ways of having uninterrupted time alone. Furthermore, now that you no longer have the burden of being your spouse’s primary caregiver, you can focus on the relationship the two of you have. You can be there for them in other ways beyond taking care of basic functions. You may even find that this new focus on love itself, without day to day hassles, brings you even closer than you were before, and eliminates feelings of guilt and resentment. Though it’s important to nurture your marriage, it is also crucial during this time that you care for yourself. While your spouse was still at home, you likely put off your own needs and desires, and now is the time to remedy that. Make sure that you address any of your own neglected health needs, both physical and mental. As you probably know, you can only help someone else if you help yourself first. There is no cure for dementia, but despite this a move to memory care can result in healing for both of you. You may not only be caring for your loved one’s condition, but also for the health of your relationship.
Spouse with dementiaWe all agree that marriages that have lasted decades are precious. These couples have come to know each other in ways so intimate that their other relationships pale in comparison. When one half is diagnosed with dementia and moving to a memory care facility becomes necessary, the separation is of course heartbreaking. Though there may in part be some relief on the part of the spouse who was serving as a caregiver, such a drastic life change requires much strength and bravery from both. This change often comes quite suddenly, and can be overwhelming. Possibly it was precipitated by an emergency hospital visit or a frightening incident at home. Indeed, this may be the most difficult challenge a couple’s relationship has ever faced. The most crucial time is the first few months, as they enter into new and unknown territory. The following are common emotions and experiences you may have during this time:
  • A sense of loss of control as you are no longer responsible for your spouse’s day to day care
  • Struggles with how to handle a sudden increase in free time and an empty home
  • Guilt at being unable to continue to care for your spouse at home
  • Anger and despair that the life you shared, and your closest friend, is gone
  • Fear about what the future may hold
  • Second guessing the decision you’ve made
It is important to acknowledge these experiences and emotions if you are to cope with this change successfully. You may wonder if negative feelings or feelings of relief are “wrong.” Or your feelings of sadness and grief may overwhelm you. However, it’s important that you come to view the situation in a new way that will not be destructive. This is a difficult decision to make, especially if your spouse doesn’t want to leave home. But remember that the decision to enter a memory care facility is in your spouse’s best interest, and demonstrates the utmost care for their well-being on your part. There they will be cared for safely and with professional skill. In addition to working on changing your perspective, you may also want to seek out counseling, support groups, or spiritual guidance. Time with family may also help. Finally, being open with your grief can also help you heal. The next post will cover how to foster intimacy in this situation and how to continue with your relationship despite the separation.
Losing a loved one to Alzheimer's isn't easy.If you feel that you’ve already lost your loved one, even though he or she is still alive, you may be experiencing some of the classic and normal signs of grief that usually aren’t felt until your loved one has died. Reading articles, websites, and books about coping can be helpful, and you can also consider some of these ideas. Know That They’re Still There Remember that at one time, your parent knew a different “you.” You as a baby, a toddler, and a child were a different version of you, but it was you nonetheless. If you can see your parent as being at a different phase of his or her life, it can be less painful than allowing yourself to think that he or she is gone. Cherish the Memories Make the assumption that your loved ones can see and hear some of what you’re saying and doing. Talk to them, read to them, and continue the same as you would if they were sitting up smiling at you. It will absolutely give you much comfort in knowing that you have truly done your best. Be Kind to Yourself Were you patient enough? Did you love them enough? Did you respond quickly enough to feed them, change them, and answer the phone when they called? Were you…good enough? Yes. You were. The loving care that your parent is receiving now is a result of you being “good enough.” Your parent cared for you, and you were able to come full circle and care for him or her and ensure that he or she is receiving the best possible care. Explore Others’ Experiences When he was diagnosed at the age of 57, Tomas DeBaggio wrote Losing My Mind: An Intimate Look at Life with Alzheimer’s. His book, the first of its kind, chronicled the extraordinary account of his journey through the disease. He said that it “silently hollows the brain” and slowly “gobbles memory and destroys life.” He wrote the book for himself in an effort to remember his life before he lost it forever, but it serves as a landmark piece of literature that helps the aging and their families understand the mind of the Alzheimer’s victim. The first step in this challenging time is for families to understand that their loved ones are not gone. They may appear to be gone, and their doctors may say that their minds are gone, but they are still there. All research indicates that though they may not respond to much and they cannot express themselves, they do feel. Above all, be good to yourself. This time is probably at least as difficult for you as it is for them.
Entering assisted living is a life-changing decision that can cause a lot of stress and emotion that rivals other big events. Here are some tips to make the process a little easier. 1. Plan Ahead Gather the family together and decide who will handle what. Make a list of the necessary things that need to be done, decide who will do them, and when. If possible, include the senior in these discussions as much as possible. This will help ease the anxiety they will be feeling. Planning can also involve encouraging them to maintain a productive frame of mind and remain flexible. 2. Stay Positive What you’re doing is difficult, but remember that it’s the right thing. It’s natural to feel some guilt, but try to let it go. Take care of yourself, ask for help if you need it, and manage your own stress. Keep in mind that this process takes a toll on caregivers too, sometimes even when it goes well. You may be surprised to find that you are the one feeling forgotten if your loved one makes new friends quickly and doesn’t want to spend a lot of time with you. 3. Communicate Clearly About Tough Decisions Make sure everyone knows who will be doing what and who will be making decisions about financial and medical matters. Is it necessary for a family member to have Power of Attorney? Is a Living Will in place? It’s a good idea to have a conversation with your loved one’s lawyer and doctor about your options. These discussions may or may not seem necessary when entering assisted living, but having the conversation in advance can cut down on confusion during a future medical crisis. 4. Make Assisted Living Feel Like Home Personalizing the space can go a long way towards making it feel comfortable. Hang curtains, put decorations on the walls, and use a familiar quilt or bedspread. Beyond decorating, encourage your senior to become active and make friends in their new community. It’s the people who make a home. 5. Listen to Your Loved One Don’t forget what a difficult time this is. It can be extremely hard for seniors to give up some of the control they’ve had for all their adult lives. Honor their desires as much as you can and take their concerns seriously. Reassure them that you will be there if they need help and that they’re not being abandoned. It would be a good idea to set aside some of your time to be in their lives a little more during this period. At the same time, give them the space they need to adjust on their own – they can’t become fully comfortable with their new lives if you’re always there. Also understand that at this time, emotions over seemingly small issues can really be driven by something much larger. Sadness over a pair of socks that were lost in the wash could really be sadness about giving up a home and independence. Expect the adjustment to take a few months, and don’t try to rush the process. New homes take time to get used to.